Connie’s Relapsed Refractory Multiple Myeloma Story

Connie is a self-described Wyoming cowgirl — not the rough type, but someone who balances it with gentle self-care. She’s happily married to her high school sweetheart, Greg. Together, they’ve raised 3 wonderful children.

In 2001, she survived thyroid cancer. In 2012, at age 46, she found herself with yet another diagnosis, this time, the rare blood cancer multiple myeloma.

In this video series, Connie shares her story of diagnosis, numerous treatments and clinical trials, relapse, and the side effects she endured. Connie’s journey is not yet over; it is a continuous quest for treatment while living life to the fullest with her family.

Explore her inspiring 3-part story series below. Thank you so much for sharing, Connie!

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

---

VIDEO: Multiple Myeloma Diagnosis

I would get a pain in my shoulder, in the back. My chest was tender, and I had a cough. I actually went to the ER once with pain in my chest. I had slight bronchitis, so I ended up getting treated for that.

I had slipped on the ice, and so my hip hurting had been attributed to that. By the time I actually went to the doctor, I had 4 broken rib, a small hole in my sternum and lesions in my skull and spine.

I was in pretty bad shape, but I had made excuses for it. I just thought that I was a busy mom and that’s why I was so tired. I was actually working at a hospital, so once I did go to see a doctor, she actually said, “I’ve seen you limping down the halls.” She sent me immediately for a CT scan.

»MORE: What is multiple myeloma?

Multiple myeloma diagnosis

It did take a while because I was at a small community hospital, and I had thyroid cancer in 2001. Originally, they thought it was metastatic from thyroid cancer, which would have been actually worse. In some ways, I got the better of two evils when we found out it was multiple myeloma.

I went to a little larger facility and had a bone marrow biopsy. That’s when they determined that it was multiple myeloma.

It had been well over 11 years since my thyroid cancer, and I had really put cancer away on the top shelf. Maybe I should have thought all these aches and pains would have been cancer, but I never thought about cancer.

Thyroid cancer is so curable that I just was only having yearly checkups. It was just a big shock to find out that it was multiple myeloma. I was only 46 years old then.

Living life while undergoing treatment

I don’t think it was always a cloud. Cancers truly do make you think about how you should treasure every day. For the most part, I was trying to do that.

You don’t want to be down worrying all the time. Yet, any time a scan came up or whatever, then you got nervous and thought about it more.

I don’t really remember exactly what the schedule was for the pre-chemo, but I know that it was a really tough one. The only time I lost my hair was from that chemo treatment.

It definitely makes you very sick, and the goal is to get your white count down to zero so that then they can give you back your stem cells that hopefully aren’t corrupted with cancer anymore. You really have to be quite sick for them to bring you back and start getting healthy again.

I was in the hospital for almost a month. I got to be home for Christmas; we flew home on December 18th. I know that the doctors were a little bit hesitant to let me go, but they knew that it was going to do me really good to be home for Christmas. I spent Thanksgiving in the hospital and my husband Greg was with me, but our 3 kids were with their grandparents.

Ask how sick you’re supposed to be. I think it’s always a good idea to share with your oncologist just how sick you really are specifically and whether you’re not eating.

Revlimid side effects

The Patient Story: You were in remission, but then there was the neuropathy issue. The next year, November 2015, you’re on Cytoxan and Pomalyst. Your first time with Pomalyst, you had nausea. You had Zofran to help combat that, right?

I do remember my doctor telling me to think of Pomalyst like a cousin to Revlimid. That was actually positive to hear because I hadn’t had a lot of side effects with Revlimid. It was nice that it was a pill because that means one less trip and sitting in a hospital getting IV.

When you talk about quality of life, I think it’s awesome. If you can get your therapy in a pill form and just take it at home and that your weeks aren’t lined out like chemo Monday, chemo Tuesday, that’s better. Just taking a pill every day is easier, if possible.

Dexamethasone side effects

At first, when I just started seeing things more gray and shadowy and a little bit hard to see, like at night driving, I just thought, “What if the cancer’s gone into my eyes or brain?”

I have to admit, that point caused a little panic. I was so relieved when I found out it was cataracts and could just easily be fixed. I had double cataract surgery, and it was a breeze.

---

VIDEO: Multiple Myeloma Relapse & Clinical Trials

Symptoms of 1st Relapse

When they started to grow a little more, I had one little spot on my side, on the rib area. It was not even as big as a quarter, and it wasn’t really purple at that point. It didn’t really look the way multiple myeloma often looks, where it’s more purply. That came later.

It was sort of slow growing, too, but it did start to grow. Then I got one on my arm, and it was finally biopsied. Then they knew that it was cancer. It eventually showed up in a PET scan, too, and it had other spots.

Another relapse

It started out as the size of a pea. It was a little tumor on my clavicle. Actually, it wasn’t picked up originally on the PET scan either, but that’s where it was both a blessing and a curse because I can actually see the tumor and see how I’m doing and and know to get treatment early because it really was my best diagnostic tool.

With my kappa light chain multiple myeloma, it doesn’t always show up in the blood test — at least not until it’s a little more developed. Yet, we could see this growing. That new symptom meant it’s time for a different treatment.

Does it get easier or harder?

It gets harder every time. I wish I could say that it got easier, but even though you know it’s incurable, you just get so hopeful.

Maybe you can get used to a chemo and the routine. I’ll take an anti-nausea pill once a day, and that works. I can take this rest reflex and have my regimen down.

You know what to expect. But just about the time that you’re into a routine, boom, it changes and you’ve got to change therapies as well.

New treatments

What Darzalex and Pomalyst were like

I never thought I would forget, but honestly, lots of times now, all the chemos have blurred together in their side effects.

I didn’t have a lot of trouble with Darzalex until it was combined with a different treatment later, as I recall. But the Darzalex with Pomalyst wasn’t as bad. 

Cytoxan is one of the worst, but the side effects are treatable with Zofran and stuff. I’m one of those people that will go ahead and take the anti-nausea meds for the acid reflux and the different things if they’ll help. I’m not one to say, “Oh, I don’t really need it. I can tough it out.” Cancer’s tough enough.

With everything to go through, I say accept the medications and use them the way they’re designed to be used. With pain, too. You don’t have to live in a lot of pain if you just monitor it correctly.

I was neutropenic a lot, so I would have Neupogen shots quite regularly. Being neutropenic makes you really tired and ache all over, especially your legs, plus your immune system is jeopardized. It was scary to be going out in public.

That’s where you had to balance whether you should go to a social event with all your friends or you should stay home. It’s like the things people are doing on a regular basis with COVID, but I was doing that years ago.

You have to make those tough decisions of whether to go out and about and enjoy something and wear a mask, or maybe best just to stay home. I did miss some important events because of not wanting to be around crowds during flu seasons.

I slipped in under the radar. I had it in March 18th, just when COVID hit. I arrived at the end of April at NIH, and they quit taking patients. I was one of the last patients, probably because I came from Wyoming. If I hadn’t come from so far, they might have sent me home. At least I made it in to be able to do that.

Infusion reactions

I think there were a lot of factors there. I honestly was just a little bit down then, too, and just didn’t have that motivation to take on being sick. I needed a little bit of a break.

Things did work out, though. I ended up finding something that worked better: the Blenrep. Even when I said enough on the other one, I knew that the Blenrep was on the horizon. We were just waiting for it. I’d heard really good things about the Blenrep, except for the visual toxicity.

Stopping Blenrep

I only had one treatment, and then my eyes got so bad that I couldn’t have another treatment. Then there was lots of follow-up with having the eyes checked. I actually had blisters on my cornea. It caused really bad blurred vision.

At first, it was with what we’ve all become as users of phones and computers. I thought that won’t be that bad if it’s not total vision loss. When you can’t read a text or anything, I became a little more techie as far as being able to learn from audio and even have the phone read audio. It taught me a few things, but you couldn’t do things like Facebook and read emails.

That part only lasted a few weeks. Then the part where seeing in a distance like driving was harder for longer. I’m experiencing that again now because I had Blenrep in August, and now I’m experiencing a little bit of blurred vision at a distance again.

Once you’ve had a reaction, they will let you have it a second time once you’re recovered. That’s what I finally got to do a second time in August.

But I had a reaction again. Now, even though Blenrep did work to treat the multiple myeloma, I can’t have it anymore.

That’s the way it should be: to be cautious and not let someone lose their vision over it.

What’s next?

I’m also waiting for another new novel chemo. I was waiting for it to get approved. It’s that kind of run-around between the health care facility and the insurance.

I find it so important because this time I delayed a little bit. That getting on the phone and staying on hold for an hour or however long it takes to get hold of the insurance company and say, “I thought that this would be approved.”

I actually did get approval for isatuximab, but I haven’t had a dose yet.

---

VIDEO: Living with Multiple Myeloma

Traveling to get treated

It meant that I really needed to accept help from people that were willing to drive me — lots of family and friends — because lots of times after the chemo, I didn’t feel well enough to drive.

My blood pressure would drop or something, so it did mean getting rides. Those chemos were twice a week or every week with a week off. That was a lot of driving.

I have been able to have some treatments at the hospital right in our town, but they have just a very small chemotherapy setup. It usually depends on whether it’s a therapy that my oncologists think I can have in a small town and be able to handle if there’s a side effect. For the new one that I’ll be having, they want me to do it in Billings, Montana, which is 180 miles away.

You just have to try to be nice, even though it’s really frustrating sometimes. It’s usually not anyone’s fault. It’s just there’s a lot of miscommunication in health care.

We talked about electronic medical records and all these things, but we are so far away from having any type of really good system where it’s all coordinated together.

It’s especially difficult for someone like me because I’m dealing with a hospital right in my own town to have labs, then a hospital where I’ll have my chemo and test sometimes, then traveling to MD Anderson or NIH.

Sometimes it’s considered locally even if it’s 180 miles away. I’d be dealing with three facilities and having to coordinate the communication between them.

What can you say to those beginning their myeloma experience?

Take one day at a time.

I know that’s sort of simplistic, but it is true because if you start focusing too much on the unknown, it won’t work. You have to focus on what you’ve got to do just that day, what fun you can have, and how you can make that quality day.

It’s better not to look too long-term, because with multiple myeloma, it’s probably going to change. You’re probably not going to be able to make a plan out there. Any minute, something can happen, and then you need a different therapy.

Doing those follow-ups when they’re scheduled is really important. Do things in a timely manner because they can help you catch it right off.

Take one day at a time. If you start focusing too much on the unknown, it won’t work. You have to focus on what you’ve got to do just that day, what fun you can have, and how you can make that quality day.

Jump in with both feet. For me, the trials bought me time and gave my body just a little bit of a break from the routine of chemo.

Patient advocacy comes in all forms, and it really is the communication with your doctor, the nurses, everyone along the way.

For other people going through this, they’ve made leaps and bounds with multiple myeloma with research in it.

It is not curable, but I’m sure you can still live a good life.

---

More Relapsed/Refractory Multiple Myeloma Stories