Categories
Chemotherapy Colon Colorectal Eloxatin (oxaliplatin) Patient Stories Treatments Xeloda (capecitabine)

Courtney’s Stage 3A Colorectal Cancer Story

Courtney’s Stage 3A Colorectal Cancer Story

Courtney, a high school English teacher from Spokane, experienced symptoms such as fatigue and blood in her stool that led her to suspect she had colon cancer. Despite initial dismissals from multiple doctors due to her age and lack of family history, Courtney persisted in advocating for herself, ultimately undergoing a series of tests, including colonoscopies and scans, which confirmed her suspicions. Diagnosed with stage 3A colorectal cancer, Courtney underwent surgery to remove the tumor and lymph nodes, followed by chemotherapy as a precautionary measure.

Throughout her treatment journey, Courtney faced various challenges, including side effects from chemotherapy such as hand-foot-and-mouth sores and neuropathy. Despite these obstacles, she pushed forward, continuing to teach full-time and engaging in physical therapy to regain her strength. Three years into remission, Courtney emphasizes the importance of self-advocacy, listening to one’s body, and pushing for answers, especially when faced with medical dismissals or ambiguity. She encourages others to trust their instincts, seek support from loved ones, and persevere in navigating the healthcare system to ensure proper diagnosis and treatment.

Courtney shares her stage 1 colorectal cancer story
  • Name: Courtney H. 
  • Diagnosis (DX):
    • Colon Cancer
  • Staging:
    • 3A
  • Symptoms:
    • Blood in stool
    • Fatigue
  • Treatment:
    • Surgery
    • Chemotherapy
      • Capecitabine
      • Oxaliplatin
Courtney shares her colorectal cancer story timeline

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.

Courtney H.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.


Symptoms

Tell us about yourself

My name is Courtney. I am a teacher. I teach high school English – specifically honors 9 English and mythology. I am a big lover of reading. I like to play outdoor volleyball, garden, and explore. I live in Spokane, in the Pacific Northwest. It’s so beautiful. We have four seasons and lots of activities and different things to do. I like to spend time with my niece and nephew. 

Courtney is a teacher
What were your first symptoms?

I took an anatomy and physiology class in college, and one of the only things I remember from that was that the professor said, “Most often when you have internal bleeding of some sort, it is your body’s inability to heal itself, and that usually comes in the form of a tumor.” 

What had happened was I had gotten a teaching job in Othello, where I grew up, and I moved down there. This was August of 2020. I was a very busy new teacher. I was the head cheer coach for a cheer program. I worked a lot of jobs in grad school, and so I just was very used to being on the go all the time and having a busy and packed schedule.

I knew I was sick. I knew I had colon cancer, so I just kept pushing.

When I moved to Othello, I started showing one symptom – I had blood in my stool, and I instantly knew. I knew instantly that I had colon cancer. Moving down to Othello, I had to get all of my records and everything transferred down there, including all my medical stuff. So I wasn’t able to go in and see a doctor until October. My symptoms kept progressing, and I just knew when that started happening. I was trying to find somebody that could help me find the exact diagnosis. The answer. 

Did you have any additional symptoms?

Just blood in the stool and fatigue. My friend’s mom, who’s a nurse, did a blood test on me and she said I was very anemic. What we ended up finding out when they had taken the tumor out is the blood flow was feeding the tumor, and that’s why I was so anemic. 

Colorectal symptoms included fatigue and blood in stool

Colonoscopy

Experiencing medical gaslighting

The first general practitioner doctor I went to, he dismissed all my symptoms and said, “There’s nothing wrong with you. You’re thin, you don’t have a family history. You just need to make some dietary changes.” I was like, “Well, I’m going to keep trying to find answers.” It was in the middle of COVID, so everything was pushed back. Then symptoms kept getting worse. When I came home for Christmas break – home was Spokane – I saw a different doctor and it was the same thing. He spent about an hour with me, ran some tests, dismissed all my symptoms, but I knew I was sick. I knew I had colon cancer, so I just kept pushing. 

The first doctor in Richland, he actually had put in a referral for me to see a GI specialist. I was able to see a GI in January of 2021 and [experienced] the same thing. She dismissed all my symptoms. Finally I said, “Listen, this isn’t about you being right or me being right. This is about figuring out what’s wrong. You’re speculating and I’m speculating.” They were all saying, “We think you have Crohn’s or diverticulitis, diverticulosis, or a bleeding hemorrhoid.” 

Courtney was raised to listen to her body and to advocate for herself

One of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body.

I said, “No, I think that I’m sick. What can we do?” She said, “Well, we can give you a colonoscopy. You’re too young and they’re very expensive.” I said, “Well, I’m a teacher. I have great health insurance. We need to do this. I think it’ll give me peace of mind knowing that we have tried everything.” 

Receiving a colonoscopy

Months later, she did a colonoscopy and found the tumor. That was February of 2021. That whole month and a half that I went through 9 different tests. I did 3 colonoscopies, a sigmoidoscopy, 2 CAT scans, a PET scan, and an MRI. There’s another one I did but I can’t remember the name of it. All of those tests brought me to the diagnosis. Now what are we going to do? What’s the plan of action going to be? I got a team together. 

What tests did the first doctors do?
Doctors assumed Courtney was healthy and hesitated to do extensive testing

He did a blood test and some general stuff. He felt my stomach to see if I had any lumps or bumps. Then he went through and looked at family history. Obviously, I don’t have a family history of it. He said, “You’re thin, you’re not pre-diabetic.” I was in Richland, Spokane, and then I went to Kennewick. So three different cities, three different doctors. The doctor in Spokane pretty much did the same thing. They didn’t do anything extensive because you can’t really diagnose it unless you actually get a colonoscopy.

The problem was, neither one of those two doctors could perform that. Then they just dismissed my symptoms. They said, “Well, we’re not going to put in a referral for you to have a colonoscopy because we don’t think, from our experience, that you have it. I really had to beg the GI specialist to give me one. 

We did a blood test with the first doctor and he didn’t see anything abnormal. Then the doctor in Spokane didn’t really see anything abnormal. But my friend’s mom, who’s a nurse, knew what to look out for because I told her what was going on. She did her own test and said, “You are severely anemic. Something’s going on.”

Did your insurance cover the cost of the colonoscopy?

I paid a little bit out of pocket, but it was mostly covered. The problem was, and this is something that I think a lot of people run into when they’re getting tests done, especially a colonoscopy or sigmoidoscopy. My insurance company did not want to pay for the right type of drugs. I didn’t know that. I didn’t hear the confirmation. They actually had to tell my parents, and it took 8 hours for the drugs that they gave me to wear off. So I actually didn’t find out about the tumor until the next day. My parents waited to call because they tried to talk to me after the procedure and I was just bonkers. 

Surgery

The importance of advocating for yourself

They dismissed the symptoms because I didn’t fit the profile, but one of the greatest skills that my parents ever taught me was the ability to advocate for myself and to know your body. I just knew I was sick. I had that feeling in my stomach. Sometimes science can only go so far, and sometimes you have to put it in your own hands and keep pushing for it. It was a unique set of circumstances, because when I did my colonoscopy, COVID cases were very light, so I was able to go in and get a colonoscopy. When I had my surgery, COVID cases were really light, so they didn’t push my surgery back. These were just perfect little windows where things ended up really working out in my favor. 

Formulating a treatment plan

Because I didn’t have the right drugs, she couldn’t finish the colonoscopy. I would have to come back 4 days later and do another one. I came back that Friday. I had [the first one] done on a Monday, came back that Friday, and everything else looked clear. She said, “I’m 98% sure that this is a cancerous tumor. We’re going to send it off to have it biopsied.” 

It took two weeks to get back. The next conversation, I said, “I know a surgeon who saved my dad’s best friend’s life. He had stage 4 rectal cancer and he’s been in remission for 20 years. I want that guy.” She was going to put in a referral for somebody else. I said, “No, I want this guy.” Then everything started to move, all the tests. 

After all of the tests came back – because the original plan was to do some radiation, 6 weeks of chemo, and then do surgery after the MRI, – the radiologist called me and said, “This is miraculous, but your tumor is a lot smaller than we thought, so we’re going to operate. Nothing else is lining up in your body, so we’re just going to go for it and operate.” So they did. 

Describe your surgery

Dr. Holbrook went in and did a lower anterior resection and took out part of my colon, 21 lymph nodes, and my appendix. He said, “I had a stage 4 appendectomy patient who’s 17 years old last week. I just thought I’d take your appendix out.” He spent about 4 hours in surgery. He just retired last year, but he’s one of the best in Spokane. I trusted him.

»MORE: Cancer Surgery Treatments 

Did you have to prepare for your surgery?

The prep work was I had to go onto a liquid diet about 48 hours before. They gave me some things that they wanted me to take prior. After I was in the hospital for about 4 days, I had a series of things that I had to go through to get out of there. I had round the clock bloodwork. They would come in at 2 a.m., they’d come in at 6 a.m.. They were checking fluids and different things like that. 

As far as the procedure, he just went in. He didn’t tell me how much of my colon he took out, but he took out the sigmoid region of the colon. That’s the end. He took that part out and did the lymph node pluck. After that, I was on a liquid diet for about 3 weeks, giving my bowels a break and allowing things to heal. He was able to go in and do it minimally. The incision where he went in was about this big. He was able to go in right underneath my stomach and do it.

Chemotherapy

What stage were you in?

We got a really good prognosis back. I had a stage one tumor. There were just a few little cancer cells that had broken off and gone into one lymph node, so I had a really good prognosis. 

Preserving fertility before starting chemo

I had my 3 week clearance from surgery, and then I actually harvested my eggs, and then I did chemo. It was boom, boom, boom. My body had been through some things. Harvesting your eggs is quite an interesting process. I didn’t know this. When you go through and you do all the things, they monitor you, they take your temperature, they do all the things. 

The day before my procedure, they did a COVID test on me and it came back positive. I didn’t know I was asymptomatic. Seattle Reproductive had to fight with Seattle to advocate to harvest my eggs because it’s a $15,000 procedure. They ended up saying, we’re going to suck it up, risk it, and do her procedure. Then I started chemo right after I was cleared from COVID. 

»MORE: Fertility After Cancer Diagnosis

Beginning chemotherapy

I didn’t have to do chemo because of my prognosis, but my surgeon and team recommended that I do it as an insurance policy. I was prescribed 2 different types. I had an infusion chemo which entered through a port and a pill chemo. I would do one infusion every 3 weeks. Then I was on pill chemo for 2 weeks at a time and I’d get a break at the end of it. 

»MORE: Chemotherapy FAQs & Patient Stories

Chemo Side Effects

Which chemos were you on and did you have side effects?

Capecitabine. The infusion chemo was called oxaliplatin. I had side effects with each. With capecitabine, I had hand-foot-and-mouth, where you get really bad sores everywhere. The other chemo was oxaliplatin. It’s a platinum chemo. It had some really strange side effects. You couldn’t touch anything cold. You couldn’t ingest anything cold. I couldn’t drive in my car with the AC on or it could close my throat. Everything had to be room temperature or hot. 

Courtney discusses her chemo side effects

It was in the middle of the summer, so one of the biggest issues I ran into was I was dehydrated a lot. I was hospitalized 2 different times for dehydration which was scary. I lost a lot of weight. I think I lost about 25 pounds. I tried to eat when I wasn’t hungry. I had to watch what I ate. They tell you you can’t have raw fruits and vegetables while you’re on chemo, which is so weird because you should be eating healthy foods, and they said to eat what I could. 

The first two days after infusion chemo and pill chemo, you’re the sickest, you’re nauseous. It’s really, really hard to get up and move around. With oxaliplatin, like I said, it’s a platinum chemo so it causes neuropathy. You have a lot of tingling going on in your body. It got to the point where my eyes were affected by it. I could taste it in my mouth. It was very all-consuming throughout my body. 

Stopping oxaliplatin

I did my own research about my particular prognosis and I decided to stop oxaliplatin after 4 rounds. That’s the infusion chemo. A lot of patients push past that, and there are some patients that end up disabled from doing that chemo. I did not want to do that. I didn’t want to risk that. It was making me so sick that I could barely eat. 

Did anything help alleviate your chemo symptoms? 

When I was dehydrated, I would go in and get pumped with fluids. That helped. I did take Zofran to help with the nausea. You can’t be in the sun either when you’re on chemo. You have all these things that you can’t do. 

»MORE: Managing Nausea and Vomiting from Chemotherapy

The best thing that helped with the side effects was to get my mind off of it.

I think for me, the best thing that helped with the side effects was to get my mind off of it. I taught full time while I was on it. That was my choice. I didn’t want to lay in bed every day and dwell on it. That’s just my personality so I decided that I was going to work and let that be the thing that would help get my mind off of it. I did oxaliplatin for 3 months and capecitabine for 6 months. 

When I went back to school to teach, I did physical therapy and that helped a lot. It helped me build up strength because I had lost so much muscle mass and lost so much weight and it helped with getting through those days.

Courtney worked through chemo treatments to stay distracted from the side effects

Reflections

How long have you been in remission?

I am almost at the 3 year mark of being in remission. I count it as April. My oncologist counts it as November because that’s when I finished chemo, but I think that the surgeon got everything. 

How often do you get scans and do you experience scanxiety?

I don’t think that it ever really leaves you. I think that it stays with you.

I just hit the 2.5 year mark, so now I go every 6 months. I think that’s one of the hardest parts. I was joking with a friend that I’m a part of an exclusive club now because it doesn’t really ever leave you. With scanxiety, I just do my best to just try and stay positive. It’s always quite exhausting because it’s a 4-day process – blood work, scan, and meet with your doctor. 

My aunt is a phlebotomist, so she’s always encouraging, giving me tips on how to stay positive and hydrate, make sure you’re ready to go. But it is a real thing, and I honestly don’t think that it ever gets any better. I think that you learn how to manage, how to live with it. The farther out that you get, you feel better. But I don’t think that it ever really leaves you. I think that it stays with you. 

What advice do you want to share with cancer patients? 
Courtney encourages everyone to advocate for themselves

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers.

You need to advocate for yourself and you need to be able to listen to your own body. Science only goes so far. Knowing, understanding, and listening to your body is really important. Because if you’re sitting in front of this doctor that doesn’t know you, you’re just a statistic. They’re trying to see where you fit, and if you don’t fit the category, you don’t fit the profile, of course they’re not going to suspect anything. 

I also think that you have to hold on to your faith and keep pushing through roadblocks and things that are in your way. You just have to keep going until you find the answers that you really desire to have. For me, that was, I’m sick of hanging out in ambiguity. I know I have it. You are speculating, but that’s why we have science. That’s why we have these things. We shouldn’t be profiling people based on their age or the way that they look. We should be listening to the patient and to their concerns. 

Advocate for yourself, know your body, listen to your body, and keep pushing until you find answers. That’s why I’m alive and well today, because I advocated, and I continued to push until I got the answers that I needed. I don’t blame any of them. They’re doctors, they’re human, but I do think that they need to listen to patients better. I think that they need to listen to their patients, listen to the concerns that they have, and really do a better job of putting something in place that is going to help. Help eliminate this ambiguity. For people that may not feel as comfortable to advocate, you just have to remember that you know your body. So even if it’s something that’s totally foreign, talk to somebody about it and try and find those answers that you are desiring to look for.

More Colorectal Cancer Stories

Allison

Allison R., Colorectal Cancer, Stage 2C



Age at Diagnosis: 32
1st Symptoms: Extreme fatigue, unexplained weight loss, blood in stool, "blockage" feeling after eating
Treatment: Concurrent adjuvant (oral) chemotherapy + radiation, colectomy, oral chemotherapy
Michelle C. feature profile

Michelle C.



Symptoms: Felt like either a UTI or yeast infection
Treatment: Chemotherapy (carboplatin and paclitaxel), surgery (hysterectomy), and radiation
Kelly shares her colorectal cancer story
Kelly S., Colorectal Cancer Diagnosis: Stage 3 Colorectal Cancer Symptoms: Constipation, blood in stool, abnormal-smelling stool, fluctuating appetite, weight lossTreatment: Dostarlimab
Jason shares his colorectal cancer story

Jason R., Colorectal Cancer, Stage 4



Symptoms: Blood in stool, diarrhea, tenesmus, feeling run down
Treatment: Chemotherapy, radiation, HAI pump
Raquel A. feature profile

Raquel A., Colorectal Cancer, Stage 4



Symptoms: Frequent bowel movements, pin-thin stools, mild red blood in stool
Treatment: Chemotherapy (oxaliplatin, 5-fluorouracil, and irinotecan)
Andrea P. Diagnosis: Stage 3 Colorectal Cancer Symptoms:Frequent blood in stool, lower back pain, rectal painTreatment: Chemo, 5-FU, radiation, surgery
Categories
Breast Cancer Breast Cancer Metastatic Palbociclib Side Effects Targeted Therapies Treatments Uncategorized

Palbociclib Side Effects

Palbociclib Side Effects & Patient Stories

Palbociclib isn’t a traditional form of chemotherapy. It’s a targeted therapy that must be taken in combination with certain hormonal therapies like aromatase inhibitors and fulvestrant and which is aimed at specific kinds of breast cancer cells.

Palbociclib, commercially known as IBRANCE, is a treatment for a specific kind of metastatic breast cancer, or breast cancer that has already spread to other parts of the body, known as HR+/HER2- mBC. Palbociclib may be able to renew patients’ hope and offer them a greater sense of possibility.

Are you a HR+/HER2- mBC patient who is considering taking palbociclib, or is about to start taking it? In this article, we provide key information about palbociclib to help you and other patients prepare to take this therapy, including what to tell your doctor before you begin; also tell you about the side effects you might experience when taking it; and provide links to a couple of real-life patient experiences shared by patients who have used palbociclib as part of their cancer treatment.

What is palbociclib, and what is it used for?

Palbociclib is a kind of cancer medicine called a CDK 4/6 inhibitor that’s prescribed for a specific type of metastatic breast cancer known as HR+/HER2- mBC. Pfizer, IBRANCE manufacturer, describes it as a “first-of-its-kind treatment” for patients with this kind of cancer.

Is palbociclib chemotherapy?

Palbociclib isn’t a traditional form of chemotherapy. It’s a targeted therapy that must be taken in combination with certain hormonal therapies like aromatase inhibitors and fulvestrant and which is aimed at specific kinds of breast cancer cells.

“My first line of treatment in 2017 was IBRANCE, which was approved by the FDA in 2015. I was able to be on a medication that had just recently been approved by the FDA, which is huge.   That line or that class of drugs, the CDK4/6 inhibitors, has really changed the landscape of breast cancer. Starting in 2015 with IBRANCE, and then there’s now a fourth one that’s being added to that class. People are living a whole lot longer with far less side effects.”

Abigail, Stage 4 Metastatic Breast Cancer

What are CDK 4/6 inhibitors?

CDK 4/6 inhibitors are cancer treatments that disrupt how breast cancer cells divide and multiply. To do so, these treatments target specific proteins called cyclin-dependent kinases 4 and 6, or CDK 4/6 for short. 

CDK 4/6 proteins are found in both healthy cells and cancer cells, and control how quickly these cells grow and divide. In breast cancer, these proteins can cause cancer cells to grow and divide wildly. CDK 4/6 inhibitors target these proteins with the aim of slowing down or even stopping cancer cells growth altogether. This is why palbociclib and the other CDK 4/6 inhibitors, KISQUALI (ribociclib) and VERZENIO (abemaciclib), are known as targeted therapies.

How and when is palbociclib used?

Palbociclib is prescribed for hormone-receptor positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) metastatic breast cancer (mBC)—in short, HR+/HER2- mBC. This is the most common subtype of metastatic breast cancer, representing approximately 60% of all breast cancer cases.

The growth of hormone-receptor positive breast cancer cells is supported by one of both of the hormones estrogen or progesterone. And HER2-negative cancers test negative for the HER2 protein, which is another protein that can promote cancer cell growth.

“I’m on a medication called IBRANCE — that’s three weeks on, one week off — and that’s what knocks down my immunity. [Sometimes], I have to take an extra week off because my immunity is too low to continue that one so it’s a little bit of a dance with that one. It’s all working.”

Bethany, Stage 4 Metastatic Breast Cancer

Palbociclib is always prescribed in combination with hormonal therapies such as aromatase inhibitors and fulvestrant. Palbociclib is available in pill form and is taken daily, by mouth and with food. 

Palbociclib is given out in four-week cycles, the last week of which is a week-long break—which means that you’ll need to take it for 21 days straight, followed by a 7-day off-treatment period, to comprise a complete cycle of 28 days.

How much does palbociclib cost?

The cash price for palbociclib, using an online coupon, can be $13,000 to $13,500 for a 21-day supply. Most people won’t be paying this price, though—this is the cash price only, with a discount coupon, and is not valid with insurance plans. The prescription cost may be lower for those who have commercial insurance.

If you’d like to explore getting a copay card or copay assistance, Pfizer can help. The Pfizer Oncology Together Co-Pay Savings Program may help eligible, commercially insured patients save on their out-of-pocket costs. Pfizer Oncology Together can connect patients who are uninsured, underinsured, or have government insurance with resources that may help pay for a prescription.

Palbociclib isn’t currently available in a generic version.

How effective is palbociclib?

Pfizer has shared the results of clinical trials that tested IBRANCE in combination with the aromatase inhibitor letrozole (more than half of the patients involved in the trial saw their tumors shrink in size, versus 44% who took letrozole and a placebo), and in combination with the hormonal therapy fulvestrant (24.6% of these patients saw their tumors shrink vis-a-vis just 10.9% of those who took fulvestrant and a placebo).

What to expect when taking palbociclib

When taking palbociclib, side effects can be expected—some of which are serious. Be sure to share any side effects you may experience with your doctor immediately. Your doctor may interrupt or stop treatment with it completely if any of the symptoms you experience are severe.

Palbociclib side effects

“My first line of treatment after I finished chemo was IBRANCE and letrozole, and I was able to be on that for 2 years. 

“There were very low side effects. Most targeted therapy affects the bone marrow, so we had to watch for low white blood cells, or neutropenia. I was always immunocompromised and having to be careful. The main side effects were the blood counts and some fatigue.”

Abigail, Stage 4 Metastatic Breast Cancer

Palbociclib side effects can include but may not be limited to the following:

  1. Low white blood cell counts (neutropenia) are very common when taking palbociclib and may lead to serious infections. Your white blood cell counts will need to be checked before and during treatment. During treatment, you’ll need to tell your doctor right away if you experience any symptoms of neutropenia or infections such as fever and chills.
  2. Palbociclib may cause lung problems (pneumonitis) stemming from severe inflammation, including chest pain, cough with or without mucus, and trouble breathing or shortness of breath.
  3. Low red blood cell counts and low platelet counts. Make sure to inform your doctor immediately if you bleed or bruise more easily, feel dizzy or weak, and/or experience nosebleeds and shortness of breath while on treatment.
  4. Possible allergic reactions to palbociclib, including hives, difficulty breathing, and swelling of your lips, tongue, face and/or throat.
  5. Fertility problems in male patients.
  6. Tiredness.
  7. Nausea.
  8. Sore mouth.
  9. Abnormalities in liver and blood tests.
  10. Diarrhea.
  11. Hair thinning or hair loss.
  12. Vomiting.
  13. Rashes.
  14. Loss of appetite.

What to tell your doctor or healthcare provider before starting treatment with palbociclib

Before starting treatment, you’ll need to inform your doctor about all your medical conditions, including:

  1. Signs and symptoms of possible infection, such as fever or chills.
  2. Liver or kidney problems.

You’ll also need to tell your doctor if you’re pregnant or planning to get pregnant, or, if you’re male, have a female partner who can get pregnant. Palbociclib can harm unborn babies.

  1. Female patients who can become pregnant will need to take effective birth control for the duration of their treatment and up to three weeks after its final dose.
  2. Male patients with female partners who can become pregnant will need to use effective birth control during treatment and for at least 3 months after taking their final dose.

Lastly, it would be good to determine if you’re allergic to palbociclib before you start taking it.

Foods to avoid while on palbociclib

Do not eat foods containing grapefruit or drink grapefruit juice while on this treatment. According to Pfizer, they may actually increase the amount of palbociclib in your bloodstream.

Stories of patients taking palbociclib

Stacy S.

Stacy S.



Diagnosis: Myelofibrosis with CALR and ASXL1 mutations
Symptoms: Fatique, cold hands and feet
Treatment: Agrylin (for thrombocythemia), Ruxolitinib (Jakafi), Fedratinib (INREBIC), stem cell transplant
Ruth R. Diagnosis: Myeloproliferative Neoplasms (MPN) Treatment: Chemotherapy, Bone marrow biopsy, clinical trial
Natalia's Myelofibrosis Story
Natalia A. Diagnosis: Myelofibrosis Symptoms: Anemia, fatigue, weakness, shortness of breath Treatment: Phlebotomies, iron pills, blood transfusion

Mary L.



Diagnosis: Myelofibrosis (MPN)
1st Symptoms: Fatigue, extreme dizziness (later diagnosed as vertigo)
Treatment: Pegasys, hydroxyurea (current)
Kristin D.

Kristin D.



Symptoms: None; caught at routine blood work
Treatment: Stem cell transplant
Joseph C. feature profile

Joseph C.



Symptoms: None; caught at routine blood work
Treatment: Clinical trial: VONJO (pacritinib)

Jeremy S.



Diagnosis: Myeloproliferative Neoplasm (MPN), Polycythemia vera (PV) and Chronic Lymphocytic Leukemia (CLL)

Doug A. feature profile

Doug A.



Symptoms: Fatigue
Treatment: ruxolitinib, selinexor (clinical trial)
Cathy T. feature profile

Cathy T.



Diagnosis: Myelofibrosis

Symptoms: None; caught at a routine blood test
Treatment: Stem cell transplant
Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Sources

About IBRANCE

U.S. Food and Drug Administration (FDA) 

BreastCancer.org

National Cancer Institute (NIH)

The Mayo Clinic

MedlinePlus

Drugs.com

OncLive

Categories
Cancers FAQ Side Effects Side Effects

Nausea and Vomiting: Managing Chemo Nausea

Managing Nausea and Vomiting from Chemotherapy

Nausea and vomiting are two of the most feared chemo symptoms, and for good reason — not only do nausea and vomiting feel downright horrible, they can keep you from getting the nutrients and calories your body needs to help you heal during chemo.

While modern-day chemo patients are often given a list of anti-emetics (anti-nausea medications) a mile long, breakthrough nausea can still sometimes occur.

Read on to find out why chemo causes nausea and vomiting, tips and tricks for staying on top of the nausea, and what to do if you have breakthrough nausea or vomiting. 

Why does chemo cause nausea and vomiting?

Chemotherapy is typically given through the bloodstream, so why does it cause nausea or vomiting? According to the American Cancer Society, chemotherapy triggers an area of the brain that then sends signals to your esophagus, stomach, and intestines. This then activates a reflex pathway that causes nausea and vomiting. 

There are often other factors surrounding cancer treatment that can contribute to nausea, including anxiety, other medications, and the cancer itself. Some people will also experience anticipatory nausea or vomiting, which occurs when a person’s body reacts to a sight, smell, or experience where they’ve felt ill before. If your brain associates the chemo infusion room with nausea, you might feel ill just thinking about walking in the door. 

Who experiences chemo-induced nausea and vomiting?

Anyone undergoing chemotherapy might experience chemo-induced nausea and vomiting. According to the Mayo Clinic, there are some risk factors that may raise your chances of getting sick during or after chemo, including:

  • Being a woman
  • Being younger than 50
  • Having a history of motion sickness or nausea
  • Having anxiety
  • Previous experience with morning sickness during pregnancy
  • Having a history of not drinking alcohol

If any of these risk factors applies to you, you may need additional help controlling your nausea or vomiting during chemo.

The biggest and most known is nausea. After my first infusion and into my last, I would have about 72 hours of extreme nausea. This was day-consuming nausea. I would wake up with it, only able to eat a few things, but it did go away. Some people are not as fortunate to have that nausea go away naturally.

I was able to get back into full appetite and energy by about week two after each infusion.What helped me the most with my nausea was having some exercise. That seems counterintuitive, but it stimulates the appetite, gets you out in fresh air, and gives some movement for the body.

Nina L. (DLBCL, Stage 4) 

I would go home and rest, but I would feel great. In the middle of the night or the next day I would just get so nauseated, be so sick.

Jodi S. (Metastatic Ovarian Cancer)

How are nausea and vomiting treated?

Ever since chemotherapy usage became widespread in the 1960s and 1970s, doctors have been looking for ways to control the associated nausea and vomiting. One of the earliest drugs used to control nausea and vomiting in cancer patients was the steroid dexamethasone (nicknamed “dex”), which is still one of the most common prescribed anti-nausea drugs today. 

Every decade, researchers discover more and more drugs that can help cancer patients control nausea and vomiting. Some drugs, like Zofran (ondansetron), were specifically developed to treat nausea and vomiting in cancer patients. Other drugs, like Ativan (lorazepam), were developed for other uses and were later found to also be successful at keeping nausea at bay. You may have taken some of the drugs your doctor prescribes you to control nausea during chemo for other uses in the past. 

Before starting chemotherapy, your doctor should give you a list of drugs to have on hand to prevent nausea and vomiting. Many patients are prescribed a steroid like dexamethasone for a few days after each chemo session alongside other drugs like Zofran, Ativan, prochlorperazine, olanzapine, or medical cannabis. Your drug list may include instructions on the order in which you should take the drugs.

While some patients might be able to control their nausea with fewer medications, check with your doctor before cutting any medications out of your regimen. It is best if you stay ahead of the nausea and vomiting rather than under-medicate and then attempt to play catch-up with your medication after you’ve already started vomiting. 

While the nausea continued, it did get better as I began to take the anti-nausea meds more proactively. I also never had mouth sores again after she prescribed medication to prevent them. They weren’t a guarantee, but thankfully they worked for me! 

Stephanie C. (Primary Mediastinal B-Cell Lymphoma, Stage 3, Double Expressor)

They had given me anti-nausea medications, but I felt fine the day before, so I didn’t take them. I learned very quickly that even if you’re not feeling nauseous, you should still take the medicine. 

Stefanie H. (Invasive Ductal Carcinoma, Stage 3) 

My doctor kind of punched me in the arm, said, “Don’t be a cowboy. Take the [anti-nausea] medicine.” He’s right. I take it so you don’t have the symptoms, but you’d still have that feeling in your stomach.

Richard P. (Relapsed/Refractory DLBCL)

I really feel like I could take the anti-nausea medication and I learned after the first one, I’d just take it that night when I went to bed, take it when I wake up, just keep on that regimen. It really kept the nausea down.

I only threw up a few times during the whole process. After the first time I was in a lot of pain, I always just took the meds beforehand and just kept taking them until I felt noticeably better because it was so much easier to stay on top of it than to get behind.

Jodi S. (Metastatic Ovarian Cancer)

Anti-nausea drug regimens for chemo vary depending on the type of cancer, type of chemo, institution or doctor, and your individual tolerance. Always check with your doctor before combining medications or leaving a medication out of your daily regimen.

They’d start [my chemo] with anti-nausea medications. That would be for about a half-hour or so. Then an hour later they’d start the AC (Adriamycin, cyclophosphamide) which wasn’t very long, maybe two hours. 

The first couple of days I remember feeling pretty good. I would even go work out to keep up my exercise during treatments. But then during Day 2 or 3, little bit of nausea.

They give you anti-nausea medications that I took. I remember just mostly being in bed those two days. I was also working part-time during this time so I timed it, I was able to time it so I’d have the five days – they say you won’t feel well – off and then I’d go into work on Day 6 or 7.

The second week, you feel pretty good, pretty back to normal. And then you start again. So it was usually about five days where I felt stomach queasiness. I remember not feeling  like eating much. 

Margaret A. (Invasive Ductal Carcinoma [IDC] & Ductal Carcinoma In Situ [DCIS])

Beth A. describes her 3-medication regimen:

The first drug is Zofran… If you’re not feeling any better from that, and that usually does the trick for most people, then you take Compazine which is prochlorperazine… If you’re really still feeling sick and nauseous, the last one is Ativan which a lot of cancer patients are on and take anyway for anxiety and different things. It helps counteract some of the dexamethasone side effects as well.

Beth A. (Relapsed Refractory Multiple Myeloma)
Scott

I had nausea, but it was manageable. I had three different nausea medications running 24/7. That was a suggestion from some other people, and it helped so much. I want to be that for others. That’s why I want to be open about my experience.

Scott C. (Multiple Myeloma, IgG Lambda, Heavy Chain, Stage 3)

It was three days of rest and a little bit of nausea. I actually only threw up once before dinner one time. Then it was gone.

Other people have had different experiences, but my care team definitely prescribed me all the anti-nausea medicine and antacids.

I think I had 12 prescription bottles on my bedside table at one point. There are fixes for the worst side effects, which are nausea and sleeplessness.

CC W. (Hodgkin’s Lymphoma, Stage 3)

For nausea, an amazing new FDA approved drug called Varubi (rolapitant) that helped suppress much of my nausea. This drug was used by our cancer center and it was one of the best things because it probably kept my nausea suppressed to 10- to 20-percent, though I got nauseous at the end of two weeks.

Helicon K. (Hodgkin’s Lymphoma, Stage 2A)

I take Zofran, which is a pretty common nausea medication. They have stronger stuff if it really starts to affect you.

Evan L. (Acute Lymphoblastic Leukemia [ALL])

Some people, like Bobby J., have trouble with the medications. If your anti-nausea medication is causing you to feel depressed or anxious, talk to your doctor about alternatives.

The worst side effect from the nausea medicines was it basically put me in a depression. I lied in bed, did not want to get up. There were three different medications they gave me. I’m not sure what the three were, but it caused me to go into depression.

They just called it a cocktail, and it was three different anti-nausea medicines. In Cycles 2, 3 and 4, I did not take the anti-nausea cocktail. I believe I took some Ativan.

Bobby J. (Mantle Cell Lymphoma, Stage 4)

They do give you anti-nausea drugs, and they give what they call pre-meds. One of them is Zofran. Dexamethasone was also one of my pre-meds, and those drugs really did a great job of controlling my nausea to the point where I essentially had close to a nausea-free chemo.

Luis V. (DLBCL)

I was given some medication for discomfort. When my anti-nausea medication stopped working  (usually by Day 3 of chemo), I was given Ativan through an IV. Ativan helped with the nausea, but it made me not remember anything after I received the dose.

Donna S. (Primary Mediastinal B-Cell Lymphoma, Stage 1 to 2)

Are there any natural remedies for nausea or vomiting?

While you should make sure you’re taking your prescribed anti-nausea medication, there may be days when your anti-nausea medications don’t completely suppress your upset stomach. In those cases, natural anti-nausea remedies may help you control your nausea. 

Ginger

According to the Mayo Clinic, ginger is clinically proven to reduce the severity of nausea for patients undergoing chemotherapy when taken in combination with standard anti-nausea medication. However, studies show that ginger taken alone doesn’t do much to help control nausea for patients undergoing chemotherapy. Ginger can interfere with some medications, so check with your doctor before adding this supplement to your diet.

Peppermint

Some patients find relief from nausea by smelling peppermint oil or sucking on a peppermint candy. Studies show that consuming peppermint can help with symptoms of irritable bowel syndrome, and that inhaling peppermint oil can help control nausea. Use an essential oil diffuser or roll-on for quick aromatherapy relief.

Cold liquids

Remember sipping Sprite when you were sick as a kid? Sipping a cold drink, such as ice water, Gatorade, or club soda, helps some patients control acute nausea. Cold liquids can help calm the nervous system, sooth the stomach, and prevent dehydration. Be sure to sip slowly if your stomach as bothering you to avoid triggering vomiting.

Citrus

Fruits such as lemon and lime have been shown to help prevent nausea in some people. If you’re feeling sick, try smelling some lemon essential oil or squeezing a fresh lemon into your drink. Check with your doctor before using citrus — some fruits, such as grapefruit, can make your cancer medications less effective. 

Food

You may find that your stomach may be more sensitive when it is empty. If you’re feeling ill, try having a carbohydrate-rich snack like pretzels or cereal. If you’re prone to early morning nausea on the days after chemo, keep a granola bar at your bedside in case you wake up feeling sick.

Caitlin

For me, when I was nauseous, I found that it was my body needing something. Either I was hungry and didn’t know I was hungry, or I was thirsty and didn’t know I was thirsty. Maybe I was even sleepy and didn’t know I was sleepy. You’re on all this medication, and it throws your body out of whack. When I would get nauseous and it was too much for my anti-nausea medicine, it was usually as simple as drinking a glass of water or taking a couple of bites of a sandwich.

Caitlin J. (Invasive Ductal Carcinoma, Stage 2B)

Cancer Treatment Side Effect Articles

Cancer Treatment Side Effects: Chemotherapy, Radiation, Surgery

Cancer treatments save lives, but they also come with side effects. Hear straight from patients who’ve been treated for cancer - what they experienced and what helped them get through it...

Hair Loss and Regrowth After Chemotherapy

Hear how cancer patients dealt with hair loss after chemotherapy and what some of them used to help growth after that loss...
chemo brain

Chemo Brain: What It Is and How To Cope

Read how cancer patients, caregivers, and coworkers can cope with chemo brain during cancer treatment...

Taxol, Hair Loss & The Inevitable New ‘Do

Why does losing one’s hair cause a waterfall of tears? Read the deeply personal stories of cancer survivors' hair loss and regrowth...
radiation burns

Radiation Burns: How to Cope With Radiation Burns

Read patient testimonies and advice about managing burns from radiation therapy...

Nausea and Vomiting: Managing Chemo Nausea

Read patient testimonies and advice about managing nausea and vomiting during chemo...
Categories
FAQ Side Effects

Chemo Brain: What It Is and How To Cope

Chemo Brain: What It Is and How To Cope

Anyone who has been through chemotherapy can tell you that chemo drugs don’t just wreak havoc on your hair and stomach — they can mess with your head, too, leaving you feeling like your brain is stuck in a cloud. 

Maybe you’ve noticed yourself forgetting things you’ve always known, like the name of your sister’s dog or your best friend’s phone number. Or maybe you just feel like you’re thinking at half-speed, concentrating hard on the next thing to say while the conversation zooms by without you. Chemo brain is absolutely a real phenomenon, and it can leave cancer patients feeling hopeless and frustrated as they attempt to go to work, attend school, or interact with friends and family.

If you’re suffering from chemo brain, also known as chemotherapy brain fog, know you’re not alone. It affects people of all ages, diagnoses, and backgrounds. Read on to learn more about how chemo brain feels, how long it lasts, and how to combat it. 

What is chemo brain?

Cancer-related cognitive impairment, or “chemo brain,” is the mental confusion and fogginess that many patients experience before, during, and after cancer treatment. Patients experience chemo brain in different ways. Some people say that chemo brain makes them feel “scattered,” reduces their vocabulary, and hurts their focus

Up until recently, there wasn’t much research about the existence of chemo brain and its effect on patients. However, advances in cancer treatment mean that far more patients are living long, full lives, and doctors are placing greater emphasis on helping patients who experience this sometimes long-lasting side effect. 

Who gets chemo brain?

Chemo brain affects people who have gone through cancer treatment, but the condition isn’t specific to any particular type of cancer. According to Dr. Arash Asher at Cedars-Sinai, about 75% of cancer patients experience chemo brain during treatment and one-third of patients report symptoms of chemo brain after their treatment ends. Chemo brain is even reported by patients who don’t undergo chemotherapy. 

There are several aspects of cancer treatment that can cause brain fog and mental confusion, including:

There is no one cause of chemo brain.

What does chemo brain feel like?

People who experience chemo brain may feel a variety of different symptoms. Some people report forgetting words and names they’ve known for years. Others say the effects of treatment made it difficult to multitask or quickly perform tasks. Chemo brain symptoms range from mild forgetfulness to full-blown brain fog that can interfere with your life at work, home, and in social situations. 

Here’s how patients described their experience with chemo brain:
Samantha S. buzzed hair experienced chemo brain after her treatment.

Chemo brain is such a broad term that people use, but for me, it was always really a combination of severe sadness and difficulty functioning in everyday life, difficulty remembering things, difficulty doing what I would say, or executive functioning tasks. If I only have one thing to focus on, it’s fine. But when I’m going through an episode like that, give me a list of groceries to get at the store and it’s going to take me twice as long to find my way around. Can I cook a dish while my kids are talking to me? That would be really difficult.

Samantha S. (Relapsed Hodgkin’s Lymphoma)
Callie smiling

I definitely had some continuation of thought issues. I was very scattered.

Callie M. (Invasive Ductal Carcinoma, Stage 2B, Grade 2, ER+)
Wade looking out over a lawn

I already had a lot of focus issues before starting [treatment] and then I can’t focus on things. 

Wade W. (Hodgkin’s Lymphoma, Stage 2A)

Mila is a cervical cancer survivor who experienced chemo brain.

“…there was a fair amount of the chemo brain aspect of things where you can’t concentrate. I couldn’t think of the words that I wanted to use and that was really, for me, very frustrating because I had always prided myself on having a large vocabulary.

I work with people and have clients and so being able to express myself the way that I wanted to was always something that I was good at. That was kind of taken away from me in that time. Very frustrating.”

Mila L. (Cervical Cancer, Squamous Cell, Stage 1B1)
Nicole B. was diagnosed with Soft Tissue Sarcoma, Stage 3 and struggled with chemo brain.

I would repeat myself or be unable to recollect things – not only short term but long term too. I remember my mom bringing up memories we had, and I just could not get there.

In the game UNO, there was a green eight that was laid down. I would see it, look at my hand, and by the time I looked back I forgot what was down. I was struggling trying to process information in front of me. It was hard to even think straight trying to get through a game.

Nicole B. (Soft Tissue Sarcoma, Stage 3, Undifferentiated Pleomorphic Sarcoma) 
Barbara smiling

Once chemo was over I didn’t remember the station [HGTV] is on TV. I couldn’t read. People were dropping off books and I have to tell you that was a shock to me when I couldn’t read a book, I couldn’t focus enough.

I couldn’t watch movies. Movies required a lot of attention. I didn’t have an attention span for movies. But I could watch short shows. It was bizarre. I didn’t read magazines or books. It was these short little makeover shows. I wasn’t myself.

Barbara M. (Colon Cancer, Stage 3)
Melissa sitting in her car

This was the worst side effect for me. I felt like I was going crazy and I felt confusion. I didn’t start seeing this until later in the treatment and it probably lasted a year or so. I didn’t have issues with school memory… I had issues with small everyday decisions. For example, I watched my one-year old during the day and some days I would go to the pantry and not be able to think of how or what to make for lunch. Something about the multitude of choices and necessity of the action would fluster me. I would call my husband crying not knowing what to do. He would talk me down and give me simple instructions that I would follow.

Melissa H. (Invasive Ductal Carcinoma, Stage 2B, Triple Negative)
Rach on a beach

I remember when I still had my day job, I was typing. Then, I just couldn’t.

It was hard. I was holding a stack of binders, then I had to walk to my desk and it just dropped because I just didn’t have the strength or my wrist was hurting.

Then you also experience what they call chemo brain where things are just a little foggy and you can’t remember. Those are things that you can’t help. It gets very frustrating.

Rach D. (Invasive Ductal Carcinoma, Stage 2, Triple Positive)

How long does chemo brain last?

For some people, chemo brain ends soon after they finish treatment. However, others may find that its effects can last for months or even years. One recent study found that 36% of breast cancer survivors reported ongoing cognitive issues six months after their treatment ended. Although it may persist after treatment, most patients will find that their chemo brain resolves within a year or so of finishing cancer treatment. 

What can I do to help chemo brain?

At home

While there is no known cure for chemo brain, there are things you can do to help combat it.

  • Keep a pocket-sized notebook with you and write down everything. Make checklists throughout the day and check off tasks as you accomplish them, even if they’re simple things like “get the mail” or “text Mom back.”
  • Use technology to your advantage. If your phone has an option that allows you to keep track of where you parked your car, turn it on. Use the GPS function to set reminders that go off when you leave or enter the house. 
  • Play brain training games on your smartphone or computer. Puzzles, crosswords, and Sudoku puzzles are also good options.
  • Pick up a craft, like crochet, to keep your hands and mind busy. 
  • Take walks, stretch, or do yoga
  • Some patients find that stimulant medications like Modafinil can help. Talk to your doctor if you think a medication could help your chemo brain. 
  • Be gentle with yourself. You’re allowed to feel bad sometimes. You’re experiencing something nearly everyone around you isn’t.

I encourage trying to play games though. Do not get frustrated with yourself but try to engage your mind when you can or when you feel well enough. Try to keep yourself on your toes a little bit. We played a lot of board games and cards during treatment.

Nicole B. (Soft Tissue Sarcoma, Stage 3, Undifferentiated Pleomorphic Sarcoma) 
At work

Many adult cancer patients still participate full-time in the workforce. While it can be difficult to perform at full capacity while undergoing cancer treatment, there are strategies that can help you feel a bit more control over your work day.

  • Apps like ToDoist, Microsoft To-do, and Google Tasks are great for keeping track of tasks on your phone or computer.
  • Ask coworkers to send detailed instructions for tasks and to communicate their questions and needs in writing. It is easier to remember a task sent via email or messaging than it is to remember a task told to you over the phone. 
  • See if your company has a remote work or work-from-home policy. Many employers will understand that you may have a limited amount of energy each day, and that working from home can help you stay focused.
  • Request that all meetings be recorded if possible, and use a transcription app to keep a written record of what was said. Here are instructions for turning on transcription for some major video chat and meeting apps:

How can I help someone with chemo brain?

Chemo brain has only recently been seriously accepted by the medical community as a real phenomenon. Many people are uneducated about the mental effects of cancer treatment and may not understand the cognitive difficulties some cancer patients face. While it’s important to not treat your loved one like they are incapable, there are some things you can do to help while they go through this experience.

For everyone
  • Be patient. There are a lot of stressors that people experiencing cancer face that may affect their ability to remember things or perform tasks. Remember that they are not forgetting things or slowing down on purpose.
  • Don’t patronize them. A person experiencing chemo brain may be forgetful or slower to respond to you, but that doesn’t mean they don’t understand things or are incapable of making their own decisions.
  • Understand that it may take them a while to respond to text messages or phone calls. When you’re going through cancer, people are often flooding your phone with messages that can quickly become overwhelming. This doesn’t mean that they are trying to ignore you.
For loved ones
  • Help them take on a mental load. Offer to help them keep track of their appointments and medications or ask if there are tasks you can help with, like budgeting or sorting out health insurance claims.
  • Offer to attend doctor’s appointments or chemo sessions with them. Beyond providing emotional support, it’s important for cancer patients to have a clear-minded advocate who can speak up if something seems off. 
  • It’s important for patients to eat well, but it can be hard to plan meals. Schedule a meal drop-off, grocery delivery, or restaurant delivery meal card. Not having to think about what you’re going to eat for dinner or worry about cooking can be a huge relief.
For coworkers
  • If you are their coworker, make sure your questions and instructions are clear and concise. People undergoing cancer treatment may struggle with executive function — a vague email asking them to figure out how to do something may seem like an insurmountable task to a coworker suffering from chemo brain. 
  • Make sure all meetings are noted in an electronic calendar. Don’t ask them to remember things that aren’t explicitly written down.
  • Understand that they may be out of the office more than normal. Some days, even the difficulty of executing a morning routine is too much to handle. Allow them to work from home when possible.
  • If you are running a meeting, turn on transcription services and save a copy of the transcript in the project folder. 
  • Ask your coworker before sharing anything about their condition with clients or other coworkers. Although you may feel that you need to explain the situation to others, some cancer patients would rather not draw attention to their diagnosis. 

Cancer Treatment Side Effect Articles

Cancer Treatment Side Effects: Chemotherapy, Radiation, Surgery

Cancer treatments save lives, but they also come with side effects. Hear straight from patients who’ve been treated for cancer - what they experienced and what helped them get through it...

Hair Loss and Regrowth After Chemotherapy

Hear how cancer patients dealt with hair loss after chemotherapy and what some of them used to help growth after that loss...
chemo brain

Chemo Brain: What It Is and How To Cope

Read how cancer patients, caregivers, and coworkers can cope with chemo brain during cancer treatment...

Taxol, Hair Loss & The Inevitable New ‘Do

Why does losing one’s hair cause a waterfall of tears? Read the deeply personal stories of cancer survivors' hair loss and regrowth...
radiation burns

Radiation Burns: How to Cope With Radiation Burns

Read patient testimonies and advice about managing burns from radiation therapy...

Nausea and Vomiting: Managing Chemo Nausea

Read patient testimonies and advice about managing nausea and vomiting during chemo...