Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Grace hails from California and is a proud mother to her 3 children. She was diagnosed with acute myeloid leukemia (AML) in 2022. Her cancer was revealed by a blood test requested by her doctor after she suffered a headache that persisted for a week.
Grace’s diagnosis blindsided her and filled her with anger and confusion, as she has lived an active lifestyle and has stayed away from tobacco, alcohol, and recreational drugs. She admits, though, that her diet may have contained too many processed foods, and suspects that this may have contributed to her cancer.
Grace was completely unfamiliar with leukemia and had to learn all about it from her doctors. She also had to steel herself for all her tests and treatments, including her first bone marrow biopsy of a total of 6, which she describes as being more painful even than childbirth.
Grace ended up taking 6 chemotherapy treatments for her AML. She also had to undergo a stem cell transplant—and was lucky enough to find a compatible donor who could help.
Grace’s cancer is now in remission. To try and make sure she stays healthy from now on, she has resolved to buy and consume only organic products. Moreover, her brush with cancer has made her realize that she needs to stop taking things in her life for granted, from her family to “little things” such as hummingbirds and flowers.
Grace shares her story with us today to help others realize the importance of living a healthy lifestyle as well as having the right attitude and taking time to truly appreciate life.
Name: Grace A.
Diagnosis:
Acute myeloid leukemia (AML)
Initial Symptoms:
Headache that lasted 1 week
Treatment:
Chemotherapy
Stem cell transplant
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Brad’s Smoldering High Risk Multiple Myeloma Story
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
After having been diagnosed with smoldering myeloma in December 2019 and smoldering multiple myeloma at a second-opinion consultation just a few months afterwards, Brad was diagnosed with smoldering high risk multiple myeloma in October 2022–with a 50% chance of it becoming active within 2 years. Constant bone pain and worsening lab results as of April 2024 make it likely that he will need to start treatment soon.
Although the last few years of Brad’s life have been challenging, to say the least, he has taken refuge in his faith, derives strength and comfort from his relationship with his wife–a breast cancer survivor–and also possesses a can-do attitude that stands him in good stead. By sharing his story with us, he helps inspire and offers advice to others facing the same situation.
Name: Brad H.
Diagnosis:
Smoldering high risk multiple myeloma
Initial Symptoms:
Abnormal kidney function (stage 2 kidney disease)
Mild anemia
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
… the most important thing that you can do as a cancer patient is to live through your cancer.
Introduction
Hi, I’m Brad. I grew up in the Twin Cities area of Minneapolis.
I wear many hats. I work in the IT telecom space. I’m a professional musician. I’ve taught all my life. And I’m also a woodworker and love to golf, but I don’t do that much anymore because of my back.
I started my myeloma journey as an actual monoclonal gammopathy of undetermined significance (MGUS) person. And my current diagnosis is that of a smoldering high risk multiple myeloma.
Looking to start treatment sometime this year, according to the health professionals.
Discovery
My smoldering high-risk multiple myeloma story starts in July 2016. My primary care physician noticed that my kidney function was starting to change and that also we were starting to see my hemoglobin going down.
Now, as a type two diabetic, I’m fully aware of hemoglobin A1C, but I hadn’t really thought much about the rest. Red blood cell and hemoglobin and all of those.
So he noticed that it was getting dangerously low. So he started to say, well, why is that? And from that standpoint, we started to go through the process of a colonoscopy, let’s do an endoscopy, let’s find out if you’re bleeding somewhere. And he went through this and did the watchful waiting.
And essentially I had no abnormal feelings. I wasn’t feeling any nauseousness or dizziness. I was, you know, just kind of surprised that that was the case.
And he finally says, well, I’ve done everything I can think of. I guess we’ll send you to check with a rheumatologist. And I thought, okay, you know, having a compromised immune system, I guess that could be a possibility.
So I remember going in after the bloodwork to the rheumatologist, and the rheumatologist looked at me and said, why are you here? You have no reason to be here. You have no rheumatological issues. Okay. Thank you very much. It was one of the shorter appointments I’ve ever had in my life.
And so I reported that back to my primary care. And he says, well, you only have one more option. And so I was off to the hematologist. And in the process of the hematologist, you know, you have to go through normal blood work. Then you have to do your imaging because they wanted to do a full skeletal survey. Do all the blood work, do all those things, and then you show up for your follow up.
And so the doc says, so you have some abnormal proteins in your urine. And also we’re finding this thing called MGUS.
Diagnoses and progression
MGUS
I’m thinking, okay, what does that truly mean?
After I left, I find out that this is a non-cancerous precursor. But there’s a really bad one down the line called multiple myeloma. And your survival rate, according to those years, 2016, 2017, was not particularly good because the treatments were not strong enough to really knock it out. So that was my initial diagnosis.
Then the bone surveys show some minor lesions, lytic lesions, osteolytic lesions. And the top of my head, I remember that it was tender to the touch. But hey, you work out in the shop doing woodworking. Who knows if you hit your head doing whatever, or if you were bonked on your head by your wife while you’re asleep.
My doctor, he gets this diagnosis and he’s a little concerned because that is a step forward in your prognosis and in your diagnosis. So he goes to his buddy, another radiologist who looks at it, and they go, it really doesn’t look like anything. And I’m thinking, okay, well, this is good.
But I’ll tell you what, because your numbers keep on increasing. Maybe we should go ahead and do a bone marrow biopsy. And your kidney function is also getting a little bad because I’d been to a nephrologist, a kidney specialist, and he diagnosed me with stage two of kidney disease. Okay, let’s go have a kidney biopsy and we’ll do the bone marrow biopsy as well.
I chose to take sedation because it’s really, really painful. And you have to be sedated when you’re doing a kidney biopsy.
So December comes of 2019, and I remember taking my wife with me because I was concerned about this particular diagnosis. And we went in there and the doctor tells me that I have progressed. Now the progression percentages from MGUS to anything else is 1% a year. It’s barely been a year for me–and I’m already progressing, so I’m already over performing the wrong way.
Smoldering myeloma
And so here I was with a smoldering myeloma, which is again asymptomatic. Non-active myeloma.
Don’t worry about it. You know your chance of progression is 10% a year over five years. Okay, that sounds good. But the one important thing that everyone that has this particular stage diagnosis. I know you like your oncologist locally. But you need to get to a myeloma specialist. And being that I live about 250 miles away from Houston, I had two choices.
My wife is a breast cancer survivor, and she did her work at Cancer Treatment Centers of America up in Tulsa. So I wanted a second opinion. I wanted to make sure that we were all aligned on what my next steps are supposed to be.
Smoldering multiple myeloma Kappa
So I checked out Cancer Treatment Centers of America. I talked to MD Anderson in Houston, and I chose to go to MD Anderson because they’re a research hospital.
I happened to be scheduled with the head of the myeloma and lymphoma clinic at MD Anderson, and that was a great comfort to me. I remember making that appointment and everyone knows where this is going.
I’m now having this conversation with Anderson, and they want all my labs and they want all these other things.
So my appointment was in April of 2020, which again should remind everybody of something. So here I am waiting for all of this material to get to MD Anderson so we can go down and have a conversation. And there could be a consult. And so the date arrives and it’s toward the middle of the month. And I’d already made my reservations in Houston, and I’m driving down to Houston.
We’d already had closures, people threatening closures, and things were still relatively open so I could stop at gas stations and I could get gas if I needed to. But I came fully prepared to kind of be socked in and not have much opportunity. So I’m about 70 miles from Houston. My hotel calls–“We’re closing down.”
So I’m trying to find out where I might be able to stay. It’s a ghost town. There wasn’t anybody around. And so I put my stuff away. So the next morning I go in and meet my myeloma specialist,
You have to go through the entire intake process and they weigh you and they do all of those things. And I remember that the person, not the cancer doctor, but it was her assistant who’s also a doctor, came in and she explained what I have. And so the doctor came in, we talked about it, and she says, okay, here are your jugs. We need for you to do a 24 hour urine, and it needs you to schedule a PET scan tomorrow.
So I went through that process, did the PET scan. And so it was confirmed. She sent me a note. And so now it was watchful waiting.
Watchful waiting
So watchful waiting means that essentially, just like the words state, you are sitting here and you’re having blood work done at a regular time, and they’re looking for markers. They’re looking for changes.
Now, the thing is, nobody will tell you what those changes are. They won’t tell you what your light chains or what your ratio is or anything like that.
But watchful waiting means that you go to doctors offices 4 to 6 months, and I would choose to go every 6 months with my local doctor and every 6 months with MD Anderson. And I was able to schedule those. So every 3 months I was having some kind of bloodwork because I was not going to be the guy like on a lot of these stories. I didn’t have any idea. And all of a sudden I found myself on the floor with back problems.
It was really tough. And even going to get labs done, we decided that we would go every 6 months. So I spaced it out every 3 months. So it was 6 months local, 6 months down at MD Anderson.
So every 3 months I was having labs done. Plus I’d have my diabetic labs done. So I was doing a lot of blood work. But I decided that MD Anderson was going to be the decision maker on my care plan.
I did all of my major bloodwork and 24 hour urine collection with Anderson, because I felt that you have a nephrologist on staff. You have everybody that you need on staff.
And so MD Anderson stated that my treatment plan was going to be–come down, visit us. And during Covid we can go ahead and do virtual visits if you would like.
And so that worked out well. I would go down for my labs. And my drive for labs was to get up early in the morning, drive down to The Woodlands, which is a northern suburb of Houston. Do my labs turn around and come back. That allowed me to continue to work.
And so I could have calls while I was driving to work or driving down there and back. Managed projects, do whatever I needed to do. And then I would have a follow up with the care team and I would visit my local oncologist live.
Complications due to COVID
Covid provided unique opportunities for the United States. And it became obvious that people were supposed to be testing for Covid. They wanted you to take a shot.
I’m thinking to myself, I’m not going to take this. I’m going to take my chance. I don’t believe that this has been tested well enough with people like me. I know a lot of myeloma patients were required to take it because they had compromised immune systems. I understand that I have friends with cancer. They had to do the same thing, but they also say it was the worst decision that they ever made.
This is not a discussion about the efficacy or not of the vaccine. I’m stating that I made a personal decision and I almost paid for it with my job. Fortunately, I was able to provide a Christian reason that I don’t believe in. this particular shot and none of my doctors would give me a medical reason not to take it.
So I chose not to do it, and I was able to get dispensation.
So watchful waiting is like having an IED strapped to your body with a maniacal doctor. Standing feet from you. With a trigger ready to push the button.
I’m being hyperbolic about this, but think about what you’re looking at in those days. The potential that you will live five years was very strong. And if your genetics came back bad and they weren’t able to treat you because of those things, then you’re talking about some serious concerns.
I had two children that weren’t married. They were out of college, but I wanted to see them get married. I wanted my daughter to have grandchildren. I was hoping that my son would marry someone that wanted to have grandchildren as well.
So we come into 2022. And ’22 was pretty significant for me because I was starting to experience pain. And, you know, you tell people that you’re experiencing pain and they will always find a way to dismiss it. Gee, you’re almost 60, Brad.
Of course you’re going to have pain. And so you’re feeling really, you know, inadequate about this because you know, you don’t want to be the nervous Nelly and you don’t want to do all these things, especially someone who’s been through cancer with my wife. You know, she’s looking at you because the doctors don’t say anything.
So I found myself getting more and more concerned. I left the company that tried to fire me because of Covid, and I went to another company. The stress was immense.
I started the first portion of June, and by July I had Covid and it was difficult. But even though I have high morbidity concerns, I just took the stuff that he told me to take. It wasn’t fun, but I made it through and I was really, really tired.
And then I went for labs, and MD Anderson says if you’ve had Covid in the past three weeks, I’m not letting you in. I came down already with my 24 hour in hand, and I’m trying to find my way. I don’t want to lie to somebody when they ask me. Going through that? Yeah, it was on the 10th of July or whatever it was. Well, that hasn’t been three weeks. I’m not going home. I’m not I’m not going to do it.
So they let me in and I got my blood work done. And the numbers were a lot higher than a spike up. And so there was great concern associated with that.
Smoldering high risk multiple myeloma
Had more testing, had another bone marrow biopsy. This time I did a bone marrow biopsy without any sedation. And the doctor says, oh, you have a high pain tolerance.
And then it was time to learn about cytogenetics.
So I did my research looking at all of those things and those markers. And that’s when my doctor in November of 22 told me that I have high risk smoldering multiple myeloma. And that I have a 50% chance of being in treatment in the next two years.
I’m thinking, bring it on. Let’s just get this thing done, because I am so tired of watchfully waiting and having stress because of it.
Now in 2024, my labs continue to worsen, and the pain is now consistent–hip, pelvis, lumbar pain. You sit and you’re driving along and you feel pain in your lower back and you can feel the pressure.
Today, since my pain is now consistent, I’m sure that my smoldering high risk multiple myeloma will be there when I see my doctor next.
I am a person who prepares because that’s what I do.
I’m a risk mitigator, that’s how we handle projects.
So to mitigate my risk, I’m going to make sure that I understand what’s in front of me.
Reaction to the diagnosis
Getting cavalier
So you’re sitting there with all of these things weighing on you. Then you get cavalier.
You know, the stages of grief are that, first of all, you start to bargain and you’re saying, well, God, you know, the percentages are low, so you’re just going to keep me going here and I’m going to make it pass by 5 years and everything’s going to be great. And then, you know, the reality starts to hit as your numbers increase each time.
Each time they want to tell you again what they’re looking for. They just say that you’re stable. But when you see your numbers increase, that’s not stable to a human being, to a doctor, there is no statistical abnormality in the percentage increase because they’re looking at a number that they won’t tell you and is higher than what you have.
So emotionally it starts to drain on you. And every time, every 3 months you are going to the doctor, you get your labs done. And then you sit and you watch the labs come in and you see, oh, you have a low blood count or this is low or this is high. And so, you know, you’re doing all the things that you’re not supposed to do.
But I am a person who prepares because that’s what I do. I’m a risk mitigator, that’s how we handle projects. So to mitigate my risk, I’m going to make sure that I understand what’s in front of me.
So I had the cavalier attitude to this smoldering high risk multiple myeloma. Bring it on. I’ll do my chemo and I’ll just do this stem cell transplant. It’s going to be nothing. I am going to be cool. We’re going to have this happen.
Depression
Over time, the progression started to weigh on me more and more. Not only did I have the pressures of work, but I had this pressure and I started to go into a pretty deep depression.
I didn’t even realize I was depressed, but the depression came with such quickness and force that I found myself having trouble being able to do my job.
I almost got fired because of that.
Finding solace in prayer
So at my church, we have small groups, and I went to 1. It was the first time we were having the small group and I met some people that I didn’t know.
So I was explaining that I was getting ready to go down for some more testing and things, and I was describing that I had a smoldering high risk multiple myeloma.
And the minute I said those words, I lost it and I burst out in tears and I was inconsolable for a good five minutes as everything let out.
So those of you that have been through some type of traumatic experience, whether it’s the loss of a spouse or a child or whatever, this is the time when the acceptance happened.
And that’s the time I still get emotional. That was the time that I said, yeah, I can do this, but you know, God, you got this. And whatever your timing is for me. If this is what is to be, then I’m ready to walk this with you.
So we went around and prayed and my wife prayed for me and that was a healing thing for me.
Has God been faithful? He has been entirely faithful. Once I had that episode with my church group, it wasn’t a cavalier attitude that I had anymore. It was a peace about me. And God has nurtured that peace, despite the fact that I’ve had a lot of pain that comes.
But the problem with pain when you’re smoldering myeloma and you’re watchful waiting is your pain comes and it usually goes away about the time that it’s time to go see the doctor. Well, tell me, have you had pain? Well, yeah, about a month and a half ago. And they go, well, blah blah blah. They’re not really thinking about that because it’s not now.
… living through this diagnosis and the treatment that follows is how you get out the other side, and how you can also be part of the patient story.
Lessons Brad wants to share
So the most important thing that you can do as a cancer patient is to live through your cancer.
I like to write. In 2023, I started a blog called Living through Cancer and through that in 2021 I published a fiction or historical fiction book. And so I felt that writing and talking about my smoldering high risk multiple myeloma journey would be a helpful thing to others.
So you need to find a way for an outlet. You need to find people who are going to support you. And when it seems like your mind is controlling your body, telling you that you have pain that people don’t see, you need to not allow people to influence how you’re feeling. Your mind can do a perfectly fine job of making you feel a certain way when you’re really not. So you need to check yourself. You need to be aware of your body.
There are a lot of resources, good resources that are out there, on smoldering high risk multiple myeloma and other related concerns. Knowledge is power. You must have proper knowledge.
Anybody can research this information and maybe you want to do it with your spouse, one of your siblings. It’s a lot of people who need to be involved in your care. Not only your care team at your oncologist or your specialist office.
And finally, you have to make sure that if you’re in a watchful waiting or some type of a precancerous period, you need to make sure if you’re at all concerned that you don’t have the right diagnosis, get to a specialist. Your local oncologist is a great resource, but sometimes, especially with something that is as rare as blood cancer is, you need to have somebody that researches it.
And find your place and make peace with the fact that this is something that is treatable. Most cancers today are treatable. They’re not a death sentence. There are only a few that we won’t mention, but they’re treatable, and you can have a quality of life.
But living through this diagnosis and the treatment that follows is how you get out the other side, and how you can also be part of the patient story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Steve, a 51-year-old resident of Ontario, Canada, was diagnosed with Stage 4 colorectal cancer 3 years ago.
Steve’s diagnosis frightened and angered him. He had been suffering the symptoms of colorectal cancer for years before diagnosis, but they were shrugged off as food sensitivities. When the tumor in his colon was finally discovered, it was so large that his doctors could not get the scope past it to perform the colonoscopy. Moreover, the doctors also found 23 metastatic tumors on his liver. He was told that based on stage 4 colon cancer survival rates, he would likely live for just 3 more years.
Instead of succumbing to his initial anger and bitterness, Steve chose to fight. He decided that he didn’t want to be remembered as “the angry guy”—and the realization that if he didn’t fight, his cancer would take him away from his family, was all the motivation he needed to do so. He was also determined to model resiliency for his family, especially his sons.
Steve immediately underwent surgery to deal with his blocked bowel, and ended up having a foot of his colon removed along with the primary tumor. He then had to recover for a few weeks before he could start with chemotherapy. He also took antibody therapy medicine along with the chemotherapy. Steve ended up taking 27 rounds of chemotherapy, with some breaks, over the succeeding 3 years.
Steve’s cancer journey was far from easy. For one, he had to endure significant side effects, including unsightly bleeding rashes that covered almost his entire body. Moreover, he also discovered that he could “fight cancer in the streets” and help other cancer patients, too, and so he got involved with fundraising campaigns for his local hospital foundation and regional cancer center. He also started serving as a volunteer cancer coach at CCRAN, the Colorectal Cancer Resource and Action Network.
After 3 years of chemotherapy and a liver transplant, at his last checkup, Steve’s doctors were unable to find any evidence of his cancer.
Steve shares his story with us to grow awareness of the risks of cancer, especially colorectal cancer, and to encourage other cancer patients to remain positive and continue fighting, no matter how severe or hopeless their situations may seem.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Holly was only 25 when she was diagnosed with primary myelofibrosis.
Holly’s diagnosis was only one of a series of sad and traumatic occurrences at that particular time in her life. She had earlier lost her unborn daughter at 32 weeks due to a blood clot that passed through her placenta, and had to be placed in intensive care afterwards due to the discovery of more blood clots elsewhere in her body. Two weeks afterwards, she experienced a seizure and thrombosis stroke.
Over the succeeding year, Holly increasingly experienced symptoms that led to her undergoing a bone marrow biopsy, which revealed her cancer. What’s more, she discovered that her cancer might have had something to do with her daughter’s passing.
Holly continues to grieve her loss, but her life has taken a turn for the better. Her treatments have been effective — and she is now expecting another little girl.
Holly’s story is a testament to her resilience, the inner strength she gained, and her ability to glimpse the blessings in her life behind all her negative experiences. She shares her story with us today to help others who may find themselves in similar situations.
In addition to Holly’s narrative, The Patient Story offers a diverse collection of stories about myelofibrosis. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Holly S.
Diagnosis:
Primary myelofibrosis
Initial Symptoms:
Severe fatigue
Throbbing pain in left calf
Significant weight loss
Itching and rashes
Bruising
Shortness of breath
Treatment:
Oral chemotherapy: hydroxyurea
Immunotherapy injections: peginterferon
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I feel like I can overcome anything as long as I just remain positive.
Introduction
My name is Holly. I’m from Invercargill. It’s a small city at the bottom of New Zealand.
I am a single mum to a boy called Ambrose, who is five, turning six in October.
I was recently diagnosed with primary myelofibrosis in September of 2023.
And, yeah, just been navigating life as a single mum and just dedicating my time to him. Whilst dealing with this.
Pre-diagnosis
Initial symptoms
My first real symptoms of primary myelofibrosis basically start back in 2021 and April.
I was 32 weeks with my daughter and I started getting pain in my calf, just throbbing pain.
So I was getting constant massages to try get rid of it. Initially thought it was pre-eclampsia. I was also experiencing extreme fatigue a lot throughout the pregnancy.
And then one day I was in the supermarket and I started getting a lot of pressure in my abdomen. I didn’t really think much of it and went home.
And then I started having contractions around 9 p.m. and they lasted until 3 a.m. I started experiencing fevers and sweats and because I had had such a horrible experience with my previous midwife, with my son, I left it and I didn’t want to bother my current midwife.
And so then I’d contacted her in the morning about it, and we went down to the hospital.
She did an ultrasound and found that there was no heartbeat.
Loss of her daughter
So then I had to give birth to my daughter. And it was just a horrific, horrific delivery.
Yeah, it lasted for a few days, and I was put on these inducing pills. They gave me too many of them. And her head basically went through my uterus; I suffered a uterine rupture during labor.
So then I was rushed into theatre, and I lost 1.5 to 1.7l of blood. After that, I was in an ICU for about a week due to complications, including pneumonia.
I had a really high heart rate. I had heart failure. And they didn’t really understand what was going wrong.
And then they found that I had had a blood clot in my heart, in my lungs, and a DVT (deep vein thrombosis) in that right calf. So I’m guessing all the massaging had possibly broken the blood clot off into different parts of my organs.
So they think they also think that it caused my daughter’s death. A blood clot had passed through my placenta, causing a placental abruption.
Seizure and stroke
So I left hospital, and then two weeks later, I had a seizure and a stroke, and I was rushed back into hospital. They had found that I had had a thrombosis stroke in my brain.
So I was put on warfarin for well over six months max. And then, originally the hematologist thought that I had blood clotting disorder.
So she put me on warfarin, then took me off it for about a year just to see how my blood platelets were going to be. And they weren’t coming down, they were rising.
Discovery and diagnosis
That’s when I started having my other symptoms. And they came on quite, quite quickly because I wasn’t on any sort of medication at that time.
I started just being extremely, extremely fatigued. My arms were really, really weak. I lost 20kg without even trying, within 3 months.
I started bruising, like all over my body and the weirdest places. Itching. Crashing randomly. Constant shortness of breath.
It was it was horrible and I just I couldn’t function at all. Throughout the day.
So then the doctor sent me to have a bone marrow biopsy. I was officially diagnosed with primary myelofibrosis in September 2023.
Reaction to the diagnosis
I guess that unknown feeling I felt within those two years of not knowing. It’s sort of hard to really know. I guess I was just going through day by day.
I initially thought because I had two blood transfusions, I thought that it was all the blood transfusions that were actually causing all these symptoms, and I just thought that was normal. And I also thought because of all the physical complications I went through, my body was taking a longer time to try and heal from all of that.
And then, straight after all of that, I was thrown straight back into being a parent, single parent. Yeah, it was pretty crazy.
So when I went in for the bone marrow biopsy, I felt really numb to it all, I think because so much had happened previously, I was just on autopilot, like, okay. Yep. We’ll do this.
After I got the diagnosis, I was absolutely distraught because I didn’t know much about the disease at the time.
And I didn’t know anything. If I was going to lose all my hair, or if I was going to have to take more time being away from my son. So many thoughts running through my head.
But there’s more. As it turns out, my cancer might have had something to do with my daughter’s passing.
When my cancer was diagnosed, they didn’t really say that they thought that I had it when my daughter had passed. It wasn’t until a few months ago that they had sort of written it in doctor’s notes, speculating that it had caused my daughter’s passing and that I’d had it while I was pregnant with her.
But yeah, the feelings around it. I was more so angry at the hospital and my midwife for not monitoring me closely enough, but I guess they couldn’t really do anything about it.
But yeah, it was a terrible, terrible time. I really lost myself and my relationship fell apart; I just wasn’t coping.
I had turned to drinking a lot, so that was like my medication while trying to be a single mum and trying to just push, push forward.
And yeah, so when they had told me that they thought that I might have had it when I was pregnant with my daughter, I’d already had a huge feeling that it had caused it before they even said anything.
Treatment
Oral chemotherapy: hydroxyurea
My treatment plan was to go on an oral chemotherapy called hydroxyurea.
So I started on 500mg. My platelets weren’t really doing anything. So they were going to double the dosage.
Discovery of pregnancy, and shift to immunotherapy injections: peginterferon
And then a week later I found out I was pregnant. And I was a mess because I thought, I’m gonna have to terminate this baby.
Then they congratulated me, and put me on peginterferon. It’s immunotherapy that’s administered through an injection. I do this myself, once a week, on Sunday nights.
So I’ve been on peginterferon and aspirin, um, throughout this pregnancy and it’s brought my platelets right down.
I’m also on clexane as well, just to prevent blood clotting.
I’ve been in normal range for the last few months, and I’ve felt the best that I’ve felt in the last few years, and everything’s just looking amazing with this pregnancy.
So I’ve been really privileged, even, I guess, divinely orchestrated.
Side effects
That being said, I’ve been experiencing some side effects for the immunotherapy.
I’ve had a lot of hair thinning, acne, a lot of fatigue. And loss of appetite. I don’t really have much of an appetite. I’ve started bruising again, too.
But I actually had more symptoms with the hydroxyurea than I did with the peginterferon.
So at this point I don’t have any bone marrow scarring. I just have a lot of fibrosis.
Looking forward
New treatment plans haven’t been discussed with me at all because I’m pre fibrotic with the primary myelofibrosis.
So they for now they haven’t discussed anything with me. And I am open to other treatments if need be.
A stem cell transplant has been brought up. But I’m sort of on the fence about it, because I’ve heard such horrific stories of people that have gone through it.
I don’t know if I want to put myself through that.
… over time, this cancer, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.
Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.
Takeaways and lessons
In the beginning, my mental health was really, really bad. I was thinking the worst of everything.
But then over time, this myelofibrosis, it’s really taught me how resilient I am. And how much I’ve just trusted that whatever’s meant for me is meant for me.
Even if the cancer does get worse over time, it really has taught me to live in the moment and live in stillness and just be grateful for even the smallest things.
Yeah, it’s been a huge challenge, but it’s been one of the best things to happen to me as regards my mindset.
I feel like I can overcome anything as long as I just remain positive.
I guess I also really started to find myself. After I got diagnosed with myelofibrosis, I had an answer as to why my daughter passed away. And then I knew that it wasn’t my fault, because for a long time I blamed myself. And I felt that I could finally move forward. I had that closure.
Then that’s when the healing really started. So when, when they got the diagnosis, the healing really started. So I guess it was a little blessing in disguise, even though it was what caused it all.
Now, I’m pregnant with another little girl. I have obstetricians monitoring me every four weeks, and also multiple scans.
I am 33 weeks at the moment, and they’ve planned all these scans to make sure that everything’s fine. I’ve got phone consults with my hematologist, monthly blood tests.
And my midwife, she’s amazing. She was like, don’t worry. If you know you have an issue, just ring me and I’ll come down in the middle of the night. We can check. She’s very, very onto it.
And she’s always happy to do extra tests and scans and things to make sure that everything’s good. So they’ve really looked after me now, this time round.
I’m due on the 2nd of July, but they’re going to get me an early C-section at 37 weeks due to the uterine rupture that I previously had.
In closing, I guess my message is, you know your body better than anybody else does.
If you have an inkling of whether you’re pregnant or you may have cancer if you have an inkling that there’s something wrong—put yourself first and go and get it checked.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Faye is in recovery from surgery for a rare appendix cancer called pseudomyxoma peritonei, and she is eager to share her story to help others who may be struggling with the same or similar health concerns.
Faye’s appendix cancer was discovered entirely by accident, in the course of treatment for an ovarian cyst. Though she has a family history of cancer — her mother having succumbed to bowel cancer just a couple of years ago — she did not expect her diagnosis, much less this particular cancer.
Faye underwent what she refers to as “the mother of all surgeries”, HIPEC, during which 8 of her organs were removed and heated chemotherapy applied directly inside her abdomen, among other procedures performed. She was declared NED (no evidence of disease) afterwards.
However, Faye is not out of the woods yet. Her recovery has been slow and has had its ups and downs. Moreover, she still does have a long way to go; she will need to undergo scans for the next 20 years, with her first scan this coming November.
Despite her situation, Faye has found reasons to be positive and happy—and she is also driven to make a difference. She shares her story with us as part of her ongoing initiative to shed light on this rare kind of cancer and to let fellow patients know that they are not alone in their journey.
Name: Faye L.
Diagnosis:
Pseudomyxoma peritonei (rare appendix cancer). Low Grade Muccinous Neoplasm of the appendix
Initial Symptoms:
Severe bloating
Bad stomachache, especially after eating spicy food
Elevated CA 125 levels and tumor markers (attributed to an ovarian cyst)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
… I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice.
… You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.
Introduction
My name is Faye and I am from the United Kingdom.
I’m 39 years of age and I was diagnosed with a very rare form of appendix tumor called pseudomyxoma peritonei.
This is around a 2 to 3 in a million per year diagnosis, which obviously makes it extremely rare.
It behaves in a very strange way. I had it for 5 years and I didn’t know it was there.
It’s not your normal cancer where you’ll get nausea, you’ll feel the sickness, you’ll go, hold on, I’m not well here. It wasn’t like that for me.
Before diagnosis, I always loved to be active, traveling, going out with my dog and my partner, and just enjoying life.
Pre-diagnosis
Ovarian cyst
I just went in for an ovarian cyst which had grown to 17cm on my ovary. And then I came home with a cancer diagnosis. It was totally unexpected. It was a shock.
The only thing that was causing me problems was the cyst itself, bloating, tummy ache. And I just thought it was my period pains.
So my ovarian cyst made me very, very bloated. I was having severe stomach ache. When I ate, I’d feel full quite quickly like I’ve really bloated out, and I’ve not really eaten that much. And having tummy ache after I’d eaten certain foods like spicy foods I found didn’t agree with me anymore.
I also had elevated CA 125 levels and tumor markers. But the cyst can cause the CA 125 to be elevated, so there was no suspicion of anything cancer related before I went in for the cyst.
Operation to remove cyst and appendix
The only thing that my CT scan ever showed was inflammation of my appendix.
Even on the morning of the operation, my doctor actually said to me, I think possibly you’ve got a bit of endometriosis. So if that’s in there, I’ll scrape all that.
And the reason they found the tumor is because they agreed that when the gyno was in there, obviously doing the surgery for that part, that the bowel surgeon would join in on the surgery towards the end and he would come and take my appendix out. Just so I wouldn’t have any further complications later on down the line with appendicitis and have to have another surgery.
And yeah, even on the morning of the operation, I was like, I’m so scared. And I’ve been under anesthesia before. I was terrified that I just wouldn’t wake up. And then they just put me under.
And then I woke up in the evening on the same day and they said everything went well, the cyst was out.
And I said, is that it? It’s done with. And she said, they’ve taken a few samples of things. They will explain to you in the morning when they see you how the operation went.
I kind of read people and you can kind of tell if they’re trying to play things down. But there was no indication that they were trying to hide anything from me at all.
Discovery and diagnosis
So the doctors came in and said that the cyst operation went really well. We got the cyst out. However, we couldn’t take your appendix.
I’m really sorry, Faye, but we found a tumor on your appendix. We found a cancer.
Immediately they started to talk about further steps.
As it turns out, the tumor had ruptured. They brought up an operation called a right hemicolectomy, where they would get the deposits that had leaked outside of my appendix wall, because that’s where the tumor had ruptured inside the appendix. And then it releases a mucinous gel that just spreads all around your abdomen. And obviously it had broken through the appendix wall and it had reached into my abdomen.
They told me, I’ve got a few deposits on my small bowel and that’s it. So it’ll be a right hemi.
And they’re waiting for the biopsy results. But—they also left the cancer inside, which I couldn’t get my head around at first.
I was like, how can you not take the appendix out? How can you leave this tumor inside of me? Like, you don’t know what it’s doing?
And they were like, it’s doing nothing. It’s been there for a very long time. It’s extremely slow growing, and we’re certain leaving it in is the best thing for us to do until we get the biopsy.
And in hindsight, it was because I have heard cases since I’ve been thrown into the world of pseudomyxoma. I’ve heard cases where they’ve removed the appendix and unfortunately, some of the cells have spread further up the body, and then it’s become a different scenario for people.
So in hindsight, yes, they did me a favor, but it was very strange knowing that they’d found this cancer and they just left it there until I had, you know, the biopsy results.
Delays in receiving the diagnosis
I was told that it would take 2 weeks to get the results back. It ended up taking 6 weeks.
We had to raise a complaint because it just made me spiral.
Every Tuesday they would phone me and say, I’m really sorry we haven’t got your results back. And I’ll be like, but I’m in my bedroom here with the curtains closed, looking at funeral plans because I don’t know what this is or the extent of it.
You’re telling me that it’s nothing. But what if those results show actually you’re wrong and it is something a bit more serious?
So I was in the world of the unknown and I just didn’t know how to process it, what to think, what to do.
I had no motivation. I didn’t want to go out. I just thought, I’m going to die and I need to plan my funeral.
The official diagnosis
And then the 2nd of September is when I finally got the official diagnosis.
So they phoned me, and my partner answered the phone purely because I just didn’t want to answer the phone. If they were going to tell me that they’re not back again.
And my partner, I heard him say, okay, so it’s low grade. And then, yeah, the official diagnosis was that I have something called pseudomyxoma peritonei. It’s a low mucinous neoplasm.
And I asked her, okay, so the surgery is still going to be a right hemicolectomy. And she said, we need to refer you to our colleagues at Basingstoke who specialise in this type of cancer, and they will give you the best treatment that they can.
And I just said, is it going to still be a right hemicolectomy? And she said, I don’t think so. Basingstoke will tell you a little bit more when they get the referral, which we’re going to send shortly.
Colonoscopy
So I got diagnosed properly on the Tuesday.
I had to get a colonoscopy done, just to make sure that my large bowel wasn’t involved in any way.
My scans showed there wasn’t any involvement, but he wanted to be thorough. And, yeah, I had that done, and that was clear.
Because that’s how they found my mom’s bowel cancer. I lost my mum to bowel cancer two years ago.
So I was obviously very terrified of having a colonoscopy, thinking, you know what? If something else comes here to railroad me now and they found a polyp, or there’s something else going on, you’re just very irrational, but it’s so difficult not to be.
Reaction to the diagnosis
I guess until you’ve heard the word “cancer” yourself, it’s very difficult to imagine how one feels when you hear those words. It’s like the whole ceiling was just closing down on me.
You see, because of my mom’s passing due to her bowel cancer, I was kind of like, oh, okay, here we go again. History is repeating itself.
And there was a mirror directly in front of the bed. And I just looked into the mirror at myself and I just said to my partner, this is it. I’m going to die.
Treatment
Hyperthermic intraperitoneal chemotherapy (HIPEC) surgery
So I underwent something called “mother of all surgery”. Complete cytoreduction surgery, CRS with heated chemotherapy, HIPEC.
The operation took 11 hours, and I had to lose 8 organs to ensure that they got all the cancer out of my body.
So what they do is remove all visible evidence of disease. So in order to do that, I lost my spleen, gallbladder, appendix, ovaries, uterus, womb, fallopian tubes. I had to have a full hysterectomy.
The doctor did say that my ovaries were quite healthy. However, if I do not agree to them taking everything, I’m a ticking time bomb, so they had to go too.
I had to lose my belly button as well. They scraped my diaphragm. They scraped my pelvis from one side of it to another. They took my greater and lesser omentum, which is the fatty apron in your whole abdomen, in your tummy. And they took a little bit of the liver and scraped the liver off for good measure.
And then I had heated chemotherapy applied directly into my tummy—110 Fahrenheit of chemo blasted into me. It’s just a chemotherapy wash to kill out any cells that may be hiding away and can’t be seen with the human eye.
Basically, you’re like a stew on the hob. That’s the only way you can sort of describe it. You’re a slow cooker, you know, they’re just stirring around every 15 minutes.
Quite honestly, I didn’t expect to survive the operation.
On the day that I went down to theatre, I said to my partner, look after the dog. Your mum’s got the Christmas presents.
I did know the mortality rate was extremely low. And the doctor did say that, you know, you’re young, you’re healthy, you don’t smoke, you don’t drink.
I had also worked on fitness well up until the operation, because it’s advised that you really get your protein levels and your muscle built up to give you a head start. So, yeah, obviously building yourself up was advised because that gives you a head start on the recovery.
So I had the operation at 7:30 a.m. on the 1st of November. I believe that my partner got a call maybe about 6:00 or something to say that it was completed maybe 530, 6:00. And that I was in intensive care and they were going to keep me asleep. And they’d phoned him on Thursday to let him know when they’re going to wake me up.
So when I did wake up, I was just like… Oh. Okay. I’m here.
It was a very surreal feeling. I thought, I’m having an out of body experience. Am I not here or am I here? And then I remember feeling that my lips were just extremely dry. My throat was so dry. Obviously I had an NG tube right down my throat, which was really uncomfortable.
And yeah, I just remember saying to the lady, I’m dry, I’m thirsty, I can’t really swallow. And she just said, you’ve got a tube down your throat, so try not to move. I’ll get you a bit of water. And then she just wet my lips with a tissue and told me to just lick the water off my lips, because I couldn’t swallow water straight away.
And then she said that your surgeon’s just here waiting to see you. And then he stood by the side of the bed, and they were just asking me questions like, do you know where you are? And I was like, I’m in Basingstoke, the peritoneal malignancy unit. And they’re like, yeah.
And then Alex was like, hey, Fay, do you remember me? And I looked up and I was just like, Alex. I had to feel his arm just to make sure. Like you’re actually here. And he just said the operation went really well. Better than we expected.
And I’m pleased to say that we got it all, and there’s no more cancer.
And at that point I was just like, you got it all. It’s all gone. Like the whole nightmare was just over. And he said, yes, we’ve got it all.
He then said, I’m going to leave you to rest now. Your partner’s on his way.
And, yeah, they just left me in ICU till the Friday evening when they transferred me to the ward where my recovery really did begin.
When I came out of the surgery, I lost 10 kilos. I lost a lot of muscle mass. There was nothing to me. I was just a skeleton.
Recovery from treatment, and moving forward
So I first went to the ward to recover.
I think for the first few days it’s quite a blur, though I do remember some things.
I was on morphine. I had like a PCA where I’d administer my own morphine, just press this button. It would refresh every 12 minutes.
I had an epidural in my lower back. I had bowel stents. I had massaging boots for DVT, blood clots on my legs, which were very noisy and annoying. But therapeutic at the same time to get me to sleep in the evening.
I remember being told that I could have some jelly and soup on day four. They came around with the lunch trolley, and they were wanting to order me a lunch. And I was like, what? Me? No, I can’t eat. And they were like, no, you can, you can have soup and jelly now because you’ve opened your bowels. And I was like, oh, okay.
So it actually felt good to pick up a spoon and feed myself because I had this NG tube up my nose, which was so uncomfortable. I think for me that’s the worst part.
And the chest drains. I had six chest drains. I had two here, two in my waist and two at my pelvis, so they were quite brutal when they pulled them out. A lot of people say like, oh, it doesn’t hurt that much. No, they really do.
And I just had so many wires and lines and it was just very surreal.
And even more so that I was now there without any cancer because I was on the ward where other women, sadly, have gone in for the same procedure, and there’s 20% of cancer that’s embedded deeper into organs that are too vital, they can’t touch. So they just are on palliative care. So yeah, it’s not a very nice place to be.
Day six. They took my epidural out of my back. And then I was like, oh my God. And they showered me and patted my hair for me because obviously I didn’t have much energy to even lift my arm to clean my teeth.
And then I felt like, wow. Like I feel a different person, like all this stuff’s gone. But boy, that evening did I get the mother of all gas pain? As soon as they had the epidural out, I felt everything. Everything.
I had 14 hours of trapped gas that I was literally begging them to give me more peppermint tea or more peppermint water or painkillers. And they were like, we can’t give you painkillers. It won’t make a difference. You need to try and pass it naturally. But I had a 16-inch scar down my middle from the operation.
And that was that was quite an ordeal, trying to trying to get that gas out that had built up in my tummy. It was really, really painful.
… it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back.
But you will.
How she is doing today
Fast forward to today, and I’m still going through recovery.
On the 1st of June I was seven months post-op. It’s up to 12 months.
So recovery has been very up and down. It’s not linear. It’s quite hard hitting on the body, it’s brutal, not a walk in the park. I’m not going to wrap it up for anyone and say it’s easy, because really it isn’t.
I think I started to feel better, more myself, probably around the 3-month mark. So the surgeon did say to me, for some reason, we don’t know why, but it seems to be between the 8- and 12-week mark that patients suddenly say that they feel that they’re more on the up than before.
I started to get on the exercise bike gradually, as advised by the physio. I did five minutes increasing it to seven minutes, ten minutes. And I have actually gone to 40 minutes now.
I still struggle, you know, I still get a bit of fatigue if I overdo things. Driving my car is a little bit uncomfortable if I drive long distances. I haven’t been able to stand and do any washing up or cooking as of yet. Because I still get a bit of discomfort around the tummy where my scar is. But yeah, I’m getting there.
I mean, I’ve been out with my dog, which was really nice because I didn’t think I’d ever be able to walk him again. And it’s just about trying to get back to things that you used to love before. Thinking that you can never get them back. But you will.
I went back to work. I’m on a phased return. I work at the airport, so it’s quite physical and busy.
Yeah, it’s just the new normal. They call this the new normal. And it’s just about getting to know your body again.
Thankfully, I haven’t had any problem with food. I know a lot of patients have had issues. They can’t have onions, they can’t have steak, they can’t have certain foods. But me, thankfully, I haven’t suffered too badly with food.
When I came out of hospital, it was jelly, ice cream, soup, just liquid, you know, a very low residue diet. So my bowel could just fully recover and just heal. But internally, I’m still healing to this day.
20 years of scans
Some have said that my treatment was like ringing a bell. But it actually isn’t.
I’ve got 20 years of scans. I’ll have scans annually for the first 6 years. And then at the 20 year mark, I’ll skip 1 year at 6 years and go to 8 years, and then it’s 10, and then I believe it’s 14 and then 16 and then 20, I think is when I’m officially cancer free if I’m still OK by then.
So for now, I just get called NED. No evidence of disease. Because they said, you’re not out of the woods just yet.
Trying to process that I’m under scans for 20 years is mentally difficult. It’s like you said, with normal cancers, you’re in remission for 5 years and that’s it. You know, you’re free. Off you go. So yeah, to have 20 years hanging over my head is very difficult to process and get my head around.
However, on the flip side, a lot of people say, at least you’re being under surveillance for 20 years. You know, a lot of us get 5 years and then no more. And then we sit wondering like, oh, okay, I’m on my own now. Am I okay?
But yeah, I mean, being so young, like age 39, I won’t be declared cancer free till I’m 59. So that for me, is a lot to try and process mentally.
One scan between 39 and 59. One scan could change my whole life again. And then, you know, some people have to have a second surgery. There has been reoccurrence, but there’s 20% get reoccurrence, and that’s across all grades.
I guess I’m lucky that I had low grade, where, you know, it’s not the aggressive type Yeah, it’s very strange trying to get your head around that.
My first scan’s this coming November. I haven’t had any scan since I’ve come out of the surgery, so I’m quite nervous, anxious about this upcoming scan. And I have been since I came home last year in November.
You know, on my first scans coming up now, is it going to show me that they actually got it all, or is there going to be a cell there that was there that’s now had a year to do something, and they’re going to tell me they can see some mucin again on a scan. You just think all these things.
A lot of people say like, don’t look at the future, look at the now. But I think it’s easy for people to say that when they’re not in the situation that I’m in and others are in.
You know, I know people say stuff to try and play it down to make you feel better, but on the flip side, it really doesn’t make you feel better when people try and say to you like, don’t look in the future, look at the now. And it’s like, well, I’m sorry.
My future is, you know, scans for 20 years. And that’s a reality of my life and that’s my future.
No hair loss
I also wanted to share that a lot of people say to me, you didn’t lose your hair. Hey, I had heated chemotherapy blasted directly into my tummy as part of my HIPEC treatment.
Thankfully, I haven’t had to have “proper” chemo because this cancer very rarely or doesn’t really spread through your blood or your lymph nodes. It stays very localized in the abdomen and that area.
Sure, it’s a hard cancer to combat. You have to have the massive surgery to do it. But it’s also one of the easiest cancers to get rid of because it doesn’t usually spread anywhere else like your brain, your lungs and things like that.
So, yeah, you don’t lose your hair with that.
Reflections on her experience
I think with my mum dying from bowel cancer, I always had the fear of cancer. Like, you know, I’m a mum’s daughter. It’s genetic. It’s hereditary in some certain cancers. But I never imagined that I would have it this soon.
So, yeah, my perspective on life just changed massively.
I’ve got no time for people’s drama. I’ve got no time to argue. I just want peace and to just live life.
And, you know, I appreciate waking up every day getting to see flowers or the sky, and it’s just minute little details now that you really do notice. Whereas before you could be like, you know, it’s just a tree. Yeah, it looks pretty. But now it’s like, wow, look at that tree.
You know, you just take in a lot more when you’ve had to fight for your life, which is what I’ve had to do.
… that’s the world that you go in after you’ve had cancer.
You just hope for the best. Really.
Why she’s telling her story
And that’s why I went out and decided to tell my story from my admission into hospital, because when I was diagnosed, there was there was no information for me about this cancer.
I felt very alone and isolated, and I just don’t want people to feel that way.
And anyone that’s newly diagnosed with it now hopefully sees my page or my story and and they will have a better understanding and think, wow, you know, she’s lost 8 organs and look at her, she’s survived. She’s living, she’s cancer free. I can do this as well.
So it’s just about giving someone hope because I think anyone with a cancer diagnosis— that’s all you live on now: hope.
You hope it doesn’t come back. You hope that you get to see your retirement age. You hope that you go forward with your life now without any cancer, and you hope that every yearly scan is clear.
And that’s the world that you go in after you’ve had cancer. You just hope for the best. Really.
Going global
My story has been shared and read all around the world. I mean, I never expected to be global in my wildest dreams.
The press approached me here when I was diagnosed because I’ve got a modeling background. I had quite a following on Instagram. Which is why I decided to spin that now. I don’t want to be the model version of me anymore. I want to go out and spread awareness and use my platform that way.
And when they approached me after I was diagnosed and I just said to them, look, there’s not really any story just yet, you know what? You’re going to have to wait until I’ve got something to tell. Because after undergoing the mother of all surgery, you want to show people that it’s possible that you can survive it and you can come out of it.
So they waited for me. And December, my story dropped with one of the newspapers here as an exclusive. And then that was it.
Next thing my friends are texting and saying, you’re in Tunisia and Turkey and Hong Kong and Brazil and Sao Paulo. And they’re sending me screenshots of the news articles. And I’m like, well, okay, this is insane.
So yeah, I’ve gone global 29 countries and counting. Yesterday I was in the news in Denmark, which a friend showed me.
And I’ve got more media coming. I’ve coming out this month in the UK health magazine. I’ve got radio interviews lined up.
And obviously I’ve done my own reels on my page and Instagram, just about HRT, because obviously I’ve lost all my reproductive system. How it is with the HRT, what women can expect, what the methods are.
I started to do it because like I said, when I was diagnosed, I didn’t know what to expect at Basingstoke. You know, I went in two days before the surgery to prep me and I didn’t know what to expect. So I thought to myself when I was in my room that night, right, I’m going to start vlogging day one. What it’s like here, what I’ve had done day two.
And yeah, just the morning before the surgery and I just carried it on all through my recovery, I’ve been documenting and just vlogging everything and yeah, just to give people hope.
Supporting campaigns
Locally, I’ve also been doing a lot to support campaigns that fight cancer and help fellow patients.
Cancer Research UK are a very big organization here in the UK. They reached out to me and said, you know, we’ve seen your story. We think whoever hears it, it will have an impact on them. So we’d like to bring you in on a campaign.
And now I’m doing race for Life in Brighton. They’ve chosen me to be the face of race for life in Brighton. So I’ll be starting the horn off to sound the race. And I’ll also be doing a little speech on stage on the day. I signed up for a 10-K. I don’t know if I’m going to complete it.
So loads of people have just wanted to bring me on board and it’s great. It really helps to spread the awareness, but show people that we’re not just a statistic.
You can go out and you can still rebuild your life after cancer. Yes. It’s hard. I’m not going to say it’s easy, but it’s all you can do, right?
We’re still living. We’re still breathing. So just enjoy it.
… just have the faith that our bodies are stronger than we realize.
… my body has done amazing work and still is doing amazing work to get me where I need to be.
Closing message
So my message to people that are watching this is yes, it’s scary. Yes, it’s overwhelming. And it’s fearful. But you know, you’re not alone in those feelings.
Anyone that has been down this road, all your feelings are valid through the whole of your journey. You know, it’s how you feel about it. So don’t let anyone tell you any different.
If you need to cry, cry. If you need to scream, scream. But just have the faith that our bodies are stronger than we realize.
And I’ve learned that going through this major surgery that my body has done amazing work and still is doing amazing work to get me where I need to be. So never give up.
I’m also going out to show people that cancer’s not pretty.
You know, I documented when I was in hospital crying all through my recovery. Like, this is brutal. I can’t cope. And it’s important because I think I’ve had the modeling background.
People just think, oh, you know, pretty girl, images are photoshopped and edited. Of course they are photographers’ and editors’ images. But it’s important to show people the reality of it, as much as it’s hard hitting and it can be triggering for some people to see.
And that’s what I think will help people, especially newly diagnosed people in the future.
“My God, it is a journey. But she got there. So hopefully I will, too.”
Mark and his family had just moved to a new city where he was going to start a new job. He had been experiencing weight loss and low energy, which had been easy to attribute to stress from the move. However, a visit to a new doctor for a routine checkup revealed that his spleen was quite enlarged and his white blood cell count alarmingly high. He had also been experiencing other symptoms such as heavy night sweats and a frequent need to urinate after bedtime.
Tests conducted by an oncologist confirmed that Mark had CML. Mark quickly began a range of treatments aimed at treating his spleen through lowering his white blood counts, as well as addressing his leukemia through tyrosine kinase inhibitors or TKIs. His doctors also helped him become more familiar and comfortable with living with CML.
Mark’s story underscores the importance of listening to one’s body and not shrugging off symptoms, and of finding a supportive community that includes doctors, family members, and colleagues.
Name: Mark K.
Diagnosis:
Chronic Myeloid Leukemia (CML)
Initial Symptoms:
Weight loss
Low energy
Night sweats
Frequent need to urinate after bedtime
Enlarged spleen
Elevated white blood cell count
Treatment:
Tyrosine kinase inhibitors (TKIs) including Sprycel
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Brescia was only 20 when she was found to have early-stage Hodgkin’s Lymphoma.
When her cancer was caught, Brescia was returning to America from a study stint in Italy and was on the verge of returning to college. Her primary care physician discovered a suspicious swelling in the side of her neck during a routine physical examination, and she was scheduled for an ultrasound. A subsequent biopsy confirmed her cancer.
Brescia’s diagnosis was unsettling, to say the least, but she found refuge in the things that bring her joy and fulfillment, including being creative, making movies, and enjoying nature.
Brescia and her family sat down with her team of doctors at the Mayo Clinic in Arizona to discuss her treatment options. They considered a combination of chemotherapy and radiation, but decided to go for 6 rounds of ABVD chemotherapy and no radiation, given her youth and the fact that radiation can have long-term side effects. Brescia ended up taking the whole semester off to focus on her treatment.
Brescia has been cancer-free for 5 years now. She is now a photographer and videographer and runs her own boutique agency. Looking back at the time she was ill, she notes how she gained a new appreciation for school as well as the simple things in her life, appreciates the perspective she gained after her illness, and shares the lessons she learned from her experience.
In addition to Brescia’s narrative, The Patient Story offers a diverse collection of stories about Hodgkin Lymphoma. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Brescia D.
Diagnosis:
Hodgkin Lymphoma
Symptom:
Swelling in the side of her neck
Treatment:
Chemotherapy: 6 rounds of ABVD
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
When he was just 24, Josh was diagnosed with stage 3A testicular cancer.
Josh’s diagnosis came as a rude shock given his youth and excellent physical condition. He maintains a healthy lifestyle, has no vices, and loves to join triathlons. That said, he had been experiencing several symptoms for some months before his diagnosis, including pain in his torso and shortness of breath, which were easy to shrug off but in retrospect were suspicious.
Armed with a positive attitude, Josh decided to fight his cancer by undergoing chemotherapy. The succeeding months of his life were traumatic and difficult. Among other things, he experienced serious side effects, including a significant reaction to a medicine there was no substitute for. He also had to face the possibility of becoming infertile. However, his good attitude combined with successful treatments helped him get through those challenging days.
Josh now shares his story with us to grow awareness of testicular cancer and to fight the stigma attached to it; the importance of finding a community that can provide support, and of giving back to said community as well; and the significance of staying positive even when times get tough.
Name: Josh T.
Diagnosis:
Testicular cancer
Staging:
Stage 3A
Initial Symptoms:
Pain in his chest, lower back, and abdomen
Shortness of breath, especially during exercise
Mass found on one testicle
Treatment:
Chemotherapy: bleomycin, etoposide and cisplatin (BEP)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
33 year-old Tiffany is undergoing treatment for stage 3A ovarian cancer.
Tiffany was about to embark on a yearlong trip when she received life-altering news, a cancer diagnosis. Her diagnosis not only forced her to postpone her trip, but also convinced her to undergo IVF egg retrieval in order to preserve her ability to have children later on.
Tiffany is in the midst of her ovarian cancer treatment and, as of her interview, was steeling herself to undergo major surgery. But she has many reasons to be positive about her future. She shares her story with us to help others in the same situation.
In addition to Tiffany’s narrative, The Patient Story offers a diverse collection of stories about ovarian cancer. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Tiffany L.
Diagnosis:
Ovarian cancer
Staging:
Stage 3A
Initial Symptoms:
Severe bleeding after insertion of IUD
Discomfort and pain after working out
Treatment:
Chemotherapy: Carboplatin and Taxol
Surgery: Total hysterectomy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My biggest advice is to be really honest with yourself first.
Like, really checking in, are you feeling something or not?
Introduction
My name is Tiffany. I’m based in Austin, Texas. I’m 33 years old.
I love pole dancing, contortion, and I’m learning how to draw for fun, as well as watercolor in my free time.
I’ve been diagnosed with ovarian cancer, stage 3A.
Discovery and diagnosis
I was supposed to go travel abroad for a year in 2024, and was supposed to leave the first weekend of January. Didn’t want to carry a year’s supply of birth control with me, so I decided to get an IUD.
I had an annual exam at the gynecologist, just standard stuff, and then that was when I mentioned an IUD, and so we got that inserted. We did the normal stuff that you would do during the annual exam. The gynecologist didn’t find anything weird then.
At first, the IUD was fine, it wasn’t too painful or anything. About a week after it was inserted, I started bleeding like crazy.
I had my strings checked a month later, and that was okay, too, but I was bleeding a lot. It was like I was soaking through a heavy pad every hour or so. And so I just left it because it went away eventually.
But a couple weeks after the string check, I started bleeding a lot again, and I didn’t really stop bleeding until they took it out. I was having heavy bleeding, and then it would it would kind of slow down a bit.
It just went on for weeks. So that’s why I called them to double check to make sure it was okay.
I called them probably mid December or so. Because usually what happens is like, you call them and they just tell you, oh, it’s normal. It’s an adjustment period for the IUD, you’ll be okay. But I’m leaving in a few weeks. I need you to make sure this is okay before I go abroad.
So finally, they got back to me and they’re like, okay, we’re gonna do an ultrasound to check. I remember going in, I was like, I’m pretty sure this IUD is misplaced. I remember the sonographer going through everything. And then I looked at the screen and I saw this huge hole.
I can’t read the graphics, but I saw her face and I was like, what is going on? I’m pretty sure there’s something more than just this IUD problem. But she’s not able to tell me what’s happening because I don’t think she’s allowed to by law.
I almost was able to talk to the doctor right away, but then I actually had a work meeting, so I had to schedule it for I think the next day or something. I was just really anxious for 24 hours or so. And then the next day I went in and the doctor was like, hey, look, we found a gigantic cyst.
We don’t know what it is, the doctor said. I’m going to need to refer you to a gyno oncologist. Like I’m supposed to leave next week. Can I get an appointment right away? And she’s like, yeah, I’m gonna try to see if we can bump you up. And then she ran this blood test for the tumor marker, CA 125, that same day. So the new doctor can get all the results and stuff.
So I had an appointment I think the next week, right before I was supposed to leave. I was like, well, there’s a huge thing in me, regardless of it being cancer or not, I need to take this out. So I probably do have to postpone my trip. There’s no way, you know, this person can just take it out in a week. So, yeah, I postponed my trip.
In my head I was like, okay, maybe it’s just postponed for a few weeks or a month. Maybe I can head out in February or something, which is not a big deal. But by that time, I had already quit my job because that was the plan.
My last day of work was right before I was supposed to leave. It it just put me in a weird position because, I was like, well, I might leave soon anyway, so I guess it’s just like a month, I don’t need to get my job back. So I didn’t really bother with it. But also, it was just like a strange, in-between time where everything was up in the air.
So I went to the new doctor, the gyno oncologist. And she basically was like, I need to see an MRI. So I had to get that done the next week.
And then after that, the follow up appointment, she didn’t really say it was cancer or anything, actually, even though my blood work was over the chart, my CA 125 was like 4000 and the standard was like 35. So it was crazy high. But, different things can affect your CA 125, such as endometriosis, which I wasn’t diagnosed with. All I knew was that I had PCOS. [Polycystic ovary syndrome (PCOS) is a hormonal disorder in reproductive-age women, causing infrequent or prolonged periods and elevated androgen levels.]
So when I talked to her after the MRI, she wasn’t definitive that it was cancer, but she wasn’t saying that it wasn’t either, because they don’t really tell you until they really go in there anyways. So she basically she knew that she had to take out the ovary that was attached to the tumor. But she asked me, if it’s cancer, what are your thoughts about having kids? Um, because if it’s cancer, usually they take everything out.
It took me a few days to get back to her because it was just so shocking to think about. We ended up deciding that we would keep the other ovary in there, even if it’s cancer, because we wanted to preserve my fertility and see if we could go through the IVF route.
Going into surgery, the doctor thought it’s probably borderline because it’s rare that someone in their 30s would have ovarian cancer. But, I mean, it could happen. She said that if it is borderline, then I probably wouldn’t need chemo. It ended up not being borderline.
What happened during surgery is that she took the tumor out with the ovary, and she said the tumor was hard to take out. It wasn’t like a solid tumor, where, she could just pick it up with the robot and take it away. It was mushy and weird, gross-sounding.
The surgery took five hours, I believe, which was way longer than I expected because, besides taking it out, she also had to wait for a biopsy to see if it’s cancer and then after it’s cancerous, she does surgical staging. So she would swipe samples of different areas of my pelvis. I think it was bladder, bowels, uterus.
She took the omentum out for biopsy to see if there’s any cancer cells there. So that’s also probably why it took five hours. I took up pretty much the rest of her afternoon, so I didn’t really see her until the next day. And that’s when she told me that, hey, it is cancer.
But we didn’t know the staging; we just know that it’s probably more than likely, more than stage two, based on what I saw in there, but not definitive. Two weeks later, during my post-op appointment, I got the report.
So the original report says there were cancer cells in the omentum. So that would put me in stage 3A. But there was another part of the report where they weren’t exactly sure where the origin site is for the cancer.
So they were suspecting that it’s either primary ovarian or possibly could be from the uterus or it’s synchronized cancer, because the type that I have was called an endometrioid ovarian cancer. That might come from endometriosis. So they are thinking that it could be synchronized, but for now they are treating it as a primary ovarian cancer.
So it’s like still not definitive in a way. A little strange because I think the staging changes depending on the primary side.
So if it’s ovarian primary, it’s like stage three, if it’s uterine primary and it’s in the omentum, that could put me in stage four. But then if it’s synchronized then it could be stage one for both. So it’s very confusing. The staging kind of tells you the prognosis, but then all the information data that they have are for like older women. So then it’s not like that information is for my population.
At this rate, like honestly, I don’t look at my prognosis because none of the data is very specific to my population.
So I went ahead and got a second opinion too, just because why not? Insurance covers it. And I got a second biopsy at MD Anderson. And the report came back the same.
So that’s a good thing, that it’s the same, I guess. Ultimately they’re not really going to be able to really find out exactly what it is until they take everything out.
Treatment plan
After the doctor told me about my ovarian cancer diagnosis, she gave me a treatment plan.
So I was going to be having three rounds of chemo, surgery to take everything out, and then three rounds again.
So the midway point for the surgery, they just wanted to get the chemo in me first, but because I already would have had three rounds of chemo by then, they might not be able to really biopsy enough. There might not be enough cancer cells there for them to find out what is really going on.
IVF
About a week after the report and discussing it with her, I started my IVF cycle, so I started freezing my embryos.
That wasn’t fun. It was a lot of injections, doctor’s appointments., and going back and forth, trying to get a discount.
My insurance didn’t cover the IVF cycle, so I had to look into different organizations that would provide discounts on the clinic. And there are discounts for cancer patients, I think in most clinics, at least mine did. And I was able to get help from Livestrong and the Heart Beat program with Walgreens.
The Heart Beat program basically gave me all the medication for free, which was really helpful because the medication itself, it’s like $10,000. And then the Livestrong also helped with the medication as well. It was like a 20% discount on certain things through the clinic.
I think we were fortunate in a sense, because I know a lot of women, they have to go through multiple cycles to freeze 1 or 2 embryos. We were lucky in a sense that we only had 1 shot, just 1 cycle before chemo started. We were able to freeze 8 embryos, which was amazing.
The clinic helped. They were the ones who told me about Livestrong. And they were the ones who applied on my behalf for the Walgreens Heart Beat program.
I think the complicated part, at least with my clinic, it was more like I wasn’t really sure who should be doing what part of the application process. It might have just been a clinic issue, but they weren’t very clear on who is starting? Am I the one applying directly or are they doing it on my behalf? So I had to do a little bit of work in that regards. But ultimately they were the ones who found the programs.
My doctor was the one who referred me to this clinic, so it seemed like she already had a relationship with the reproductive endocrinologist. So before I even went on my consultation, she already knew what was going on.
In terms of figuring out financially, I think we were fortunate in a way, because we had saved up for a trip and so we already had that nest there. If it wasn’t going to cost like that, we would have just done it anyways.
My husband and I, this has been a lot of discussion between like having kids or not. He’s the one that really wanted the kids. I was more like, could be maybe. Maybe not. It was just like, okay, might as well do this because if we don’t do it, we might regret it later.
This is a little bit morbid. If I, you know, pass away in 2 years, I felt at least I left something for my husband—a part of me there for him.
So, the IVF process. The first appointment was just discussing the different options. So I had the option of just freezing the eggs or embryos. But you still have to go through the IVF process. It essentially means they’re just taking the eggs out, the embryo part comes later.
During the process, they would monitor your follicles to see how they’re growing. Usually they want you to start, I think, like day 1 or 2 of your period. Um, I didn’t. I was on a timeline, so it didn’t pertain to me But I also luckily had my period the first day I saw her. So it kind of worked out in that sense.
So the first appointment, the doctor would check to see how many eggs are already there. In a way it was fortunate I had PCOS, so I had extra eggs. Apparently, if you have PCOS, it’s better for the process because you have more eggs.
Once she thinks you’re ready, you will start doing your injections. I did two medications, on my abdomen. The first injection was just so scary because you guess your spouse or someone could help you, but I just did it on my own. The medication helps grow the follicles.
I only had one ovary to do this, for others they might have two. But for my one ovary, she saw like 18 or something on there already. So they’re trying to grow everything at the same time essentially with the medication, but they don’t want you to grow it so fast, your ovary will get too big and then you will get hyper stimulating ovaries, which will cause a lot of pain.
They want to monitor you, every other day or so with blood work to check your estrogen level and also ultrasound. So I had to go to the clinic every other day. They gave me a different medication to start, to kind of balance it out so it doesn’t overgrow.
And then after about ten days, they decided that it was time for the trigger shot. They’re checking the size of each follicle. They want them all to be as big as possible. I think I had three that were like 20mm or something, I can’t remember. And that was when they decided it was time.
So then I did the trigger shot, and then the day after, they did the egg retrieval. During egg retrieval, they put me under, and then the process took like ten minutes.
And then they woke me up and they were like, we took out 22 eggs or something.
Treatment
Chemotherapy: Carboplatin and Taxol
Right after, a week after IVF, I started chemotherapy to deal with my ovarian cancer.
I got a week break between IVF and the chemo cycle. And I went back to Jersey for a wedding.
Okay, so the chemo regimen I’m on, it’s carboplatin and taxol. My chemo regimen is every 3 weeks. I would say it’s only bad the first week, and then it’s pretty much back to normal the next two weeks.
I did so much research before, I feel like I already knew everything before I started. And also, before chemo, they did like a chemo teach where I met with one of the physician’s assistants and they gave me a binder of information. So I already had an idea of what to expect.
Side effects
In terms of side effects, I think the major one is the hair loss. That pretty much happened after cycle 1 and throughout cycle 2 as well. But I think after cycle 1, I was just so anxious, I was like, I’m going to shave it off anyways. Just get it over with.
When I was reading online, I wanted to know when my hair loss would start. And most people said it would start about the second week. So I thought, I wish I knew that because I remember after the first, for like a week, I was just obsessive about my hair.
I would wake up and be like, are you going? Are you leaving me yet? And then when it was still here, I was like, oh my gosh, maybe I’m one of those lucky people. I wish I would have known that it really would start like after the second week.
I was never too attached to my hair. Or at least I thought so. Some women love their hair and they want it to look a certain way. I guess if I cut it and it’s ugly, I didn’t care too much, would be upset for a minute, and then I’d be like, okay, it’s gonna grow back. You’ll be fine.
When my hair started falling off, when I started seeing strands of hair on my pillow, It was just horrific to see that much hair coming out. I did get a little bit emotional. I think because I didn’t have that much time to process everything. Just seeing the hair kind of hit me in the face a little bit.
And then I felt really concerned about how I looked like without hair. I wasn’t sure if I would still feel attractive or if my husband was still find me attractive.
Ultimately, when I shaved my hair off, I was I was kind of surprised that, I thought, I still look good without the hair. I went on a lot of shopping sprees, just for new styles and wigs and makeup stuff. So I think that kind of helped.
Right now, I have days where I’m like, I really miss my hair. Especially like when I go out and I see people with beautiful hair, I’m like, oh, I really miss having hair.
But then most of the other days I’m just like, oh, how would this look on me now? I feel like I get to play a little bit with a different style. And then sometimes I’m also kind of like, I wonder what style is going to stick after this is over. Maybe I’ll adopt some of these new things.
So other side effects have mostly been swollen hands. I’m also having a slight neuropathy, only on my index finger. Very strange. And then a little bit of brain fog, but that tends to fade away after the first week.
Surgery: total hysterectomy
So my next milestone in my ovarian cancer journey, I guess, is my surgery. That’s coming up on May 20th. I get 4 weeks in between surgery and chemo, which means I get an extra week to play.
So the surgery I’m getting will be a total hysterectomy. They’re going to be taking out my remaining ovary, my uterus, the fallopian tube that attaches to the ovary, and my cervix as well.
I am incredibly anxious about it, because once they take out that ovary, that puts me in surgical menopause. And for women that are in forced menopause, I’m high-risk later on for osteoporosis as well as heart disease.
Not to mention, I’ve been reading a lot of other women’s experiences that are around my age, mostly breast cancer survivors. It sounds like there’s like a thing called vaginal atrophy that will happen or might happen as well.
Also, all the other stuff that comes with menopause, like hot flashes. I’m very, very scared just about what might happen.
Also they say that sometimes you don’t get those symptoms right away. So it’s not like I’m gonna wake up and it happens. It might take a few weeks before it happens.
They haven’t really talked to me about post-surgery. I just know I get a 4-week break and then I go back for chemo, but I do believe it’s the same chemo.
… don’t brush away that little voice that’s telling you something is probably wrong.
Shifts and learnings
Support
I felt like because of my ovarian cancer situation, everyone was extra nice to me. I would say I’m very fortunate, because everyone is being so supportive.
My mom lives in Jersey and flies here every cycle to help me out, and my husband has been very supportive, too. My friends like giving me rides and everything, too.
I think it’s going pretty well for what it is.
Realizations
So when I look back, I do feel like I had the symptoms of ovarian cancer, I definitely ignored them. I do crazy workouts, so, yeah, I’m going to be like, there’s some tightness there or I just kind of brushed it off. but when I look back, I was kind of in pain.
I was remembering how there were days after I trained and I would be like, wow. Training really hurt today. And I really don’t want to do this post because it’s putting a lot of pressure in my abdomen and it’s really pretty uncomfortable. But I just brushed it away.
And so I think that if I did not get that IUD, I think it would have gotten me eventually, Because I’m young and healthy. I didn’t think of it as anything. I mean, I didn’t really bring it to the doctor or anything, but even, like, with the whole IUD thing, I felt like I had to really push for them to, take a look at it. And so, it is very important, don’t brush away that little voice that’s telling you something is probably wrong.
I think it’s mostly realizing, this sucks, but I still get to do so much cool stuff later on. Hopefully.
It sucks that I didn’t get to travel, but after this, maybe I can I can travel again, but it’s gonna look a little bit different than I planned because I’m not going to be able to just leave for a year now because of all the monitoring that they do. Kind of realizing that I’m still going to be able to see everything.
But I honestly think what has really gotten me through this is just me on the pole. Because I’m still able to pole dance, and contort, which I don’t understand how sometimes. So that has been pretty incredible, very helpful as well. Like for my mental health, too.
But I think what shifted in the way I’m thinking about it is to just appreciate what I can do, versus going after certain things and being frustrated with it. So I kind of see it in like a new perspective. Oh, I just took a class, and then I never looked back. Yeah.
Pole dancing is like a challenge. I love it because as long as you put the work or the training, the time into it, you will see results. And it’s like a way to express yourself in whatever way you want it to be.
So it doesn’t have to be sexy. It could be like emotional. It could be very athletic or just like, whatever you want. And I really love it for the art form and also for the physical challenge. And also the pole community is incredible. I made so many friends off of it, and it’s just a great place.
Advice
My biggest advice from everything that I’ve learned in my ovarian cancer journey is to be really honest with yourself first. Like, really checking in, are you feeling something or not? Even if the doctor thinks you’re being a little too much, just push them to do something because you never know.
And then really do your research before going to the doctor, because, hopefully you have a good doctor, but, if you don’t, you have the knowledge to back up what you are suspecting. And then be very assertive as to what you’re asking them for.
I would say something like, hey, I have a concern with this. Can we do a scan or something, instead of having them lead the way? You kind of want to almost lead the conversation instead.
And then also be honest with them as to what you’re feeling, too, because I think sometimes people brush away symptoms because they’re scared of what it could be. It’s better to know what it is and deal with it earlier versus later.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
61-year-old Tim, who hails from Lexington, KY, is being treated for multiple myeloma.
An elite cyclist in his youth and still striving to be active and live healthy, Tim and his family were blindsided by his surprise diagnosis with multiple myeloma in the course of treatment for a gallbladder infection. Tim refused to succumb to depression and anger and, upon his doctors’ advice, chose to undergo chemotherapy and stem cell transplants.
Thanks to his treatments, support from his family and friends, and overall can-do attitude, Tim faces each day with positivity and hope. He shares his story with us to help others who may be facing the same situation.
In addition to Tim’s narrative, The Patient Story offers a diverse collection of stories about multiple myeloma. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
Name: Tim H.
Diagnosis:
Multiple myeloma
Symptoms:
None that could be identified; cancer found through CT scan for emergency gallbladder removal
Treatments:
Chemotherapy: Revlimid, Velcade, and Dexamethasone; Darzalex, Kyprolis, and Dexamethasone; Melphalan (preparatory for stem cell transplant)
Stem cell transplant
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
You’ve got to look for hope. And you’ve got to look for help.
Introduction
My name is Tim, and I currently live in Lexington, KY. I’m in my 60s. I’m married and we have kids.
I work full time, and I also have a side business. We live on a on a small farm here in Kentucky. We have a few dogs that we like to play with. I have some old cars I like to work on. And I also try to exercise as much as possible.
In my youth, I was an elite cyclist. I’ve continued riding throughout my life.
In the late summer of 2022, I was diagnosed with multiple myeloma. It was devastating news. But it’s almost a couple of years now and things are going quite well. My family has been very supportive and we’re trying to make the best of it.
Initial “symptoms”
I actually feel I was asymptomatic.
In the late summer of 2022, I turned 60. I had never been in a hospital for any form of stay up until that point. I broke bones and, you know, had gone for stitches and things like that. But I’ve never had a hospital stay.
For about a year prior to that I was having a lot of stomach problems, but they were not very consistent. They were sporadic and sometimes months apart. And in actuality, they had nothing to do with my multiple myeloma diagnosis.
Discovery and diagnosis
In August of 2022, my wife and I were in Colorado camping to celebrate my birthday, and I started having some severe stomach problems.
About 3:00 a.m. at the start of Labor Weekend, I was in excruciating pain. At about 5:30 a.m. or so, my wife and I drove over to the emergency room and they let me in. I got seen really quickly.
They went through the normal questions, asked where the pain was and everything and said, do you still have your gallbladder? Push comes to shove, and it ends up being a severe infection in my gallbladder.
While I’m there, they’re running all the tests. They put me on some heavy painkillers and we wait and they come back eventually after quite a number of hours and say, okay, we’ve run our tests. You know, we’ve contacted a surgeon we’ve scheduled, we’ve determined that your gallbladder is very infected, you’ve got several severely large gallstones. And tomorrow we’ll go in for surgery to have those removed.
And by the way, while we were doing your CT scan, the technician noticed some things. So we will be contacting our oncologist on call to come in and have a discussion with you. We see some lesions and we think it might potentially be a few things. One of them being multiple myeloma.
At which point I looked at my wife and I’m like, did he just say they’re going to bring an oncologist in? Completely random and out of the blue. I admit I was still doped up, so I don’t think it had quite the effect that one might expect, but it was pretty startling to hear that.
So they ended up keeping me in the hospital for five days. My infection was pretty bad, and they were waiting for it to clear, but they also were running parallel tests, protein tests and such to see what they can do.
At the end of my stay, they were pretty sure that’s what it was.
I was released and then scheduled to come back a couple of days later for a bone marrow biopsy. They did the biopsy.
And then I met with the oncologist and he said, the results show that, you know, you from what you see, you have about a 25% coverage in your bone marrow. So we’re going to start scheduling your treatments. So that was at the end of September.
Multiple myeloma really messed with my head after having a full life of good health.
But you cannot put me in a downward spiral.
Reaction
There are aches and pains in my life. You know, my back has never felt great for 15 years. I don’t think any of those things were related to my multiple myeloma diagnosis.
And so it was really out of the blue and you just get dumbfounded to begin with that somebody would say that to you.
I’m like, how can I? How can I have a multiple myeloma diagnosis? I feel other than my gallbladder problems, I feel perfectly fine. I mean, I didn’t feel tired. Really didn’t feel anything like that.
But then you start worrying, of course. Especially when, you know, you start talking to your doctor, the oncologist, and I started meeting with a secondary oncologist, so I have my primary oncologist who does my treatments. And then I have a secondary oncologist at the University of Kentucky, where they decided that it would be best to do my stem cell transplant.
So when I met with them and it’s a teaching hospital, so they’ve got fellows and students there and everything while you’re being diagnosed and, you know, they can be pretty frank about some things as well. And they didn’t really sugarcoat much.
When they talked about what we can expect from this and how my multiple myeloma was not curable. They can basically prolong things for a while, but inevitably, as the fellow put it, this is going to be end up being what causes your death eventually. Unless obviously something comes along and whatnot, you get hit by the proverbial bread truck.
Multiple myeloma really messed with my head after having a full life of good health.
But you cannot put me in a downward spiral.
Choice of treatment
My doctor gave me a choice.
At the beginning it was, listen, here’s a couple of different pathways we can take. We can do multiple myeloma treatments continuously. And then when your numbers go down, we can put you on a monthly and hopefully maintain it that way. Then you can go through a stem cell transplant. And hopefully that will add a number of years onto the end. That might not be there if we just do treatments without a transplant.
Now he really didn’t have the numbers to back that up. They’re not far enough into, I think, the collective that they can really show one way or another. But it’s again, I mean, it’s a daunting thing to think about the transplant and what that might mean. But it was the best avenue. It seemed to get the best quality and length out of what time I had.
So at the beginning of October I started my multiple myeloma treatment.
Treatment
After I was diagnosed, my oncologist said, we should start treatment. We want to get you in right away.
But my wife and I asked if we could prolong a week, go away for a little bit and come back and start the treatment. It was our anniversary coming up within a couple of days. They said yes.
In the interim, they sent me the list of treatment dates and what I would be getting.
Chemotherapy: Revlimid, Velcade, and Dexamethasone; Revlimid
So I was treated twice a week. Twice a week, and then revlimid 14 days on and seven off up until mid-December, when I started having a reaction to it. I ended up with a three-quarter body rash from my chest down.
I was also not reacting to it well enough. My protein levels were coming down very slowly, much slower than they really wanted to see.
Chemotherapy: Darzalex, Kyprolis, and Dexamethasone
At the beginning of the year, they moved me over to a darzalex, kyprolis, and dexamethasone treatment, which I actually liked a lot better because it was only once a week, and then you get like a week off or and whatnot.
I reacted to that much better. I came down very quickly in protein levels.
So by April, I had slotted in for the mid-May stem cell transplant. So they stopped my multiple myeloma chemotherapy at the end of April.
Pre-stem cell transplant procedures: Melphalan chemotherapy and vaccinations
I took a couple of weeks to start getting ready for the transplant, have a chest catheter put in, and do the tests that they require to make sure you’re a valid candidate for the transplant, which I was; and then extraction of stem cells from my blood via the catheter; and then cryogenic storage of these cells.
And then I went in for chemo with melphalan to basically kill everything in my bone marrow.
After that, interestingly, I needed to get all my childhood vaccinations again.
So one of the things that the pre-stem cell transplant does is it necessitates you getting all your childhood vaccines all over again, because that protection is no longer there.
I thankfully did not have much of a reaction. I’ve heard some people tell some pretty gnarly stories about it.
I went in for my infusion and they’re like, okay, we’ll have your vaccines for you. So the nurses lined up on either side of me and then just did a countdown, and then they all just did the shots all at once.
I think they do that just to keep people’s anxiety down and such. I had some reactions of soreness and whatnot, but nothing really major.
And I had the transplant the day after that.
Stem cell transplant
The 18th of May is my rebirth day coming up. It’s going to be here in a few weeks.
Stem cell transplant sounds like a severely complicated procedure, but in reality I was amazed at how uncomplicated it can be.
After the pre-transplant procedures I described, the day afterwards, they reintroduce your frozen stem cells into your body. And then they basically replicate or grown, you’re given some other medications to agitate them quite a bit.
So they replicate fairly quickly, and then it raises your white blood count, the blood count rate and such. The idea here is that when you’re reduced to the level that myeloma is fairly undetectable in your marrow, and then the new cells are reintroduced, it will help combat them from coming back.
I got thrown straight into things like bone marrow biopsies, things where they cycle the blood out of your body, extract the cells, put it back in, and that itself is like a five hour procedure for three days each day where you’re just lying there while it’s done. That was freaky, to put it mildly.
And then the transplant itself. So they just start reintroducing the stem cells they previously extracted back into your body through the chest catheter.
I’m not a needle guy. Like I’ve spent the last almost a year, year and a half or so of having blood taken all the time, having IVs all the time and all this stuff. And I’ve never liked that at all. But now it’s just a fact of life.
My former boss, when this first started, he was like, well, what’s the alternative? So, I just kind of learned how to deal with it.
I think if you look at it, it’s probably very disturbing to a lot of people to see things like that, but maybe it’s the disturbing things that people need to see to help them along their way, to understanding that they should not let these things go. You know, go for your colonoscopy, go when things don’t feel right.
My transplant experience wasn’t much fun, mostly from the chemotherapy. Had a lot of issues with my stomach and the general feeling that you get just from the chemotherapy itself, because it is such a high dose.
I was in the hospital for three weeks. I started off with the transplant on day one, and then they kept me in the hospital for three weeks. Felt completely and utterly lousy all the time. Just severe tiredness, nausea, that kind of stuff.
Couldn’t sleep. Had a lot of things like leg cramps and just odd muscle pains, which, they medicated me for, but you’re just lying in bed at night because you can’t sleep. And your mind is going a thousand miles an hour.
I mean, you’re trying to get sleep, but they’re running tests every x number of hours. So you’re sort of asleep and they’re coming in and drawing from you through your catheter and things. So you never really get a real full rest.
Release from hospital and recuperation at home
So I was released. Went home. Was severely fatigued for a while.
It took a while to build up, I think until about the middle of July when I started to feel better. I felt like I was cheating because I’m like, I should feel worse than I do at this point. But I had just started treatment again in the middle of July and I still feel good.
I get tired. I have neuropathy. Shins on down. That’s bothersome, but I’m perfectly capable of doing all the things I like to do. I ride all the time. I work around the house and such.
That time during the hospital stay and right after the month or so after were really rough, a lot of lot of sleep, a lot of lying on the couch. I was still working.
Other than my time in the hospital, I’ve been working full time while this is going on. I manage web operations for a firm, so it’s not physically demanding.
It was a little rough; chemo fog and things, you know, it was a little tough putting words together sometimes. But my boss knew, the heads of the company knew, they were very supportive. And the sharpness came back, thankfully. And I can talk normally again.
After the transplant, there were a couple of months where I didn’t really have anything. And then I started with my maintenance chemo for my multiple myeloma at the end of July.
So I’m on darzalex and faspro once a month, and then every third month is zometa. I’m guessing it’s going to be like that for a bit more.
I’m just at the moment getting subcutaneous shots once a month and then every third visit is a matter for bone health. So that doesn’t bother me so much, but the meds they’re giving me can leave you feeling kind of funky for a little bit.
It’s a belly shot. Nobody’s favorite thing to do, and like I said, it leaves me feeling flu-like for several days. I also get a high dose of dexamethasone on those days, so I get that lovely steroid reaction.
If you think about the fact that there are still a lot of things to experience in this life and a lot of people that want you to be around, that gives you the hope to really continue on with things that just seem really daunting.
Moving forward
My general idea here is I’ll be on maintenance for my multiple myeloma for probably another year. And then they will see where my numbers are. If my numbers are still responding, then hopefully we’ll be able to go off maintenance.
It eventually becomes something that you accept. And you learn that it’s just going to be a part of your life.
For instance, like I mentioned, I don’t mind doctors and I’ve always had blood drawn and whatnot. But it’s still a bothersome experience for me no matter how many times it’s done. But it’s just something I’m going to have to accept as part of my life from now on.
And at some point somebody’s going to say. The multiple myeloma numbers are jumping back up again, and we’re going to have to start all this all over again. And I’ve accepted that that’s going to happen sometime in my future.
Hopefully it doesn’t happen for a while because there are some things that I still want to do. But do I wish that that they had the things in place to eradicate? Sure. But I know that they don’t. And I mean, just like most other cancers, there’s really not much you can do about multiple myeloma.
Fortunately, they’ve got enough treatments in place that as my oncologist refers to it, he says it’s just a treatable illness right now. There are others out there that are less fortunate in that respect.
So it’s kind of a two-sided sword there that you have to deal with. It does get you at the point where you start wondering, do I have everything in place that I need for my multiple myeloma treatment? You know, that was that’s part of the spiraling that I think happens right after diagnosis. My kids, my wife, all that.
What’s going to happen there? As I mentioned before, I’m very fortunate. My family is extremely supportive. My wife has been a trooper through this whole thing. I had a chest catheter in that had to be cleaned every day. She took care of that. It’s not something I could do, but she did.
She’s been with me to all the treatments. She wanted to be there in the hospital. They wouldn’t let her during my transfer. I mean, she was there during the transplant, but she couldn’t stay there.
I still have a lot of things I want to do. I’m not ready to give up on some things there. I guess it’s one aspect of my personality that has always been with me in my whole life. You know, you can have daunting things happen to you, whether they be financial or family or medical or anything like that. And you can give up. There’s that possibility that you’re just gonna throw in the towel.
And again, I don’t want to give up living life as long as I can, my multiple myeloma notwithstanding. So for me, I still plan out pretty far. And, you know, I’ll be honest, sometimes I’m thinking about things and it’s like, whoa, wait, why am I doing this? I should just be like, planning short term or something. But it’s just my personality. I just don’t want to give up. I’m not much for giving up.
So I still keep thinking long term in the future. I think that again could be personality, but it also I think is a learned thing that you don’t give up.
If you think about the fact that there are still a lot of things to experience in this life and a lot of people that want you to be around, that gives you the hope to really continue on with things that just seem really daunting.
Because I’ve been doing this for so long, I still plan out training plans for my riding, even though there’s really no end goal other than being able to do it and such. And there are days when, I have something planned, a workout or whatnot, and I wake up and I’m gung-ho. But by midday, it’s just too overwhelming. And I can just sit on the couch, you know, and that that would be perfectly fine.
I have trouble riding for a couple of days after my treatment just due to the fact that it’s an abdomen shot. They’re sometimes a little uncomfortable. So I just usually plan on not doing anything at that point in time.
But I think more than anything, it is doing something for yourself that can help you build strength both in mind and in body. That is just paramount for me.
I was riding all the way up until shortly before my stem cell transplant. I don’t ride every day, I try to get 3 or 4 times a week. Most of it is indoor training, except for the weekends. You know, if it’s nice, I try to get outside, but I have to be careful because I haven’t had a CT scan done since the originals, but I had lesions all throughout my femur, pelvis and lower spine.
And so the threat of fracture and things is extremely high. So I do have to be careful about that. I live in the country, so I don’t encounter much traffic. And I don’t go out for five hours at a time like I used to. If I get an hour and a half in, it makes me very happy.
But I find that even though you get really tired from the exercise, the end result is that you feel fatigued less from the treatments. Helps keep the weight down, helps with my blood pressure and such. It was it was pretty high from some of the treatments that I had. I was actually on blood pressure meds at the beginning of the year for a while because it seemed like I was having a little bit of a reaction. But I don’t have to do that anymore. That’s really good.
Because those have all hosted side effects as well And I just liked being out there and doing something for me. You know, I don’t have to think about work or any of those things, I can be out there just enjoying sunshine and wind and sometimes rain.
… I’m not going to hide my multiple myeloma again.
You don’t want it to be hidden if you could help somebody.
Lessons and takeaways
Once I got out of the hospital, the first couple of days, as I said, were really rough, were just spent on the couch, but I forced myself to get up and do things.
I would go for small walks around the neighborhood. It was very tiring, but being outside, being in the sun, getting air was very important.
And then continuously as I started feeling better, doing more and more. I started off just kind of shuffling around, but I worked up to half hour walks in the next couple of months and just being outside and seeing the flowers and things and just reminding yourself of what you know there is to experience in life.
I feel like also eating correctly is paramount to making sure that you recover well. My wife has celiac, and we don’t do a lot of processed food because of that. I made bread for her, all kind of things like that. Lots of vegetables. We eat a lot of beef and get a lot of protein that way. I can usually tell when I don’t think I eat well, how badly it makes me feel now.
I drink a lot of water and hydrate very well. And they were all adamant about hydrating because we’re putting all this stuff in you and you got to get it back out. The longer it stays in there, the worse you may feel. And it’s even now I have maintenance once a month. It’s still a thing to deal with. It’s mostly flu like kind of symptoms.
Another thing that I’ve found has been so important is to lean heavily on loved ones, family and such.
A lot of people, myself included, are very much, “I should be able to handle this myself. I shouldn’t have to bother other people for something that is my responsibility.” Meaning, it’s my multiple myeloma. It’s not their illness. Why do I have to bother anybody else about it? My dad, who’s still alive, he’s 92. And he’s battling his own battles with skin cancer.
At the beginning of this, I’ve been very open with everybody about my multiple myeloma . As I mentioned, I brought it to the attention of the people at work, even though, technically, I don’t have to. I think it’s very important.
And my dad was wondering, why are you telling people this? Shortly after my diagnosis, I made a post on Instagram and it got shared and some of my friends and family and whatnot reached out. “I was very surprised to hear that you did this.”
But I’m not going to hide my multiple myeloma again. You don’t want it to be hidden if you could help somebody.
Get people to realize or open their eyes that there might be something going on in themselves. Again, multiple myeloma is a disease that is usually not caught until it’s pretty far in, until the point where you can’t work, can’t walk. Or you break a bone bending over or turning over in bed or something like that, because your bones have been eaten away by the disease. At which point, it becomes so much harder just to do anything about it.
So again, if you’ve just been diagnosed with multiple myeloma, don’t be afraid to rely on those around you to help you. You know, if it hadn’t been for my wife helping me with these things, I don’t know what I would have done. You know, if she wasn’t there to help me clean the catheter or just help me when I couldn’t move. Making meals when I couldn’t get up. She put up with my massive dexamethasone treatments every week– shortness of temperament and such.
You’ve got to look for hope. And you’ve got to look for help.
You know, at this point it’s like, okay, I have this journey that I was basically documenting, but I’m like, now what do I do? I feel okay, but I’ve started thinking about it more and more.
And one of the things I’d like to do is get more involved in the cancer world and helping people. Just like we’re doing now. Learn how to answer questions. Deal with it because you’ve been through it.
Again, I’m not hiding my multiple myeloma. I’m trying to be open about it. I feel like I’ve learned a bunch of things, experienced a bunch of things.
So I have no objections to being very open about things that have gone on with me in this. It’s looking for all kinds of avenues to help wherever I can.
