Clay’s Relapsed Refractory Multiple Myeloma Story

Clay shares his multiple myeloma story and undergoing extensive treatment, with three different chemo regimens, radiation therapy, and both autologous and allogeneic stem cell transplants.

Explore his story below, where Clay also highlights managing through graft versus host disease (GVHD), dealing with the emotions of not being able to go back to work, caring for his caregiver and parenting through cancer.

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

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How did you get the multiple myeloma diagnosis?

We went to the ER. They didn’t know what to do with me, but they decided to admit me because it was clear that I couldn’t keep fluids down. 

I was in the hospital for maybe a day when my primary care doctor called my wife and said, “You need to talk to whoever the oncology specialist is on call. He’s got a protein level that’s high, and I think he might have multiple myeloma.”

It was brutal. I was so out of it that I had no idea what was happening. I can’t even remember it. 

It wasn’t the typical experience you think of where you’re sitting across the desk from the doctor.

My wife bore the brunt of it, and it was so hard on her. I think it was surreal for her. 

Bone marrow biopsy

At that point, they decided we needed to do a bone marrow biopsy. They wheeled me down to a CT because they needed to do it as a CT-guided biopsy. A priest had somehow found me to come bless me beforehand. 

They did the biopsy, and that confirmed that I did in fact have multiple myeloma. They found that 99% of my bone marrow was cancer.

They gave me a mild sedative. It’s like they take a drill and go into your lower back region. You can hear the drill, so that’s crazy. I don’t remember going back to my room after that, so they must’ve given me something to take the edge off. 

Processing the multiple myeloma diagnosis

I was in the hospital for about 5 days. Once I got out of the hospital and really realized I had cancer, I was focused on options. I was focused on what options I had and moving forward with those options. I’ve carried that attitude pretty much the whole time. 

I met my oncologist pretty quickly. At that point, things are just flying at you. I had a few extra people in the room with me to help ask questions and remember things for me. We all just took that approach. 

»MORE: Processing a cancer diagnosis

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What was the next treatment you tried?

We switched to KRD. I finished out the course of chemo on KRD. It was pretty similar. It was quick in the infusion lab like the first one. My schedule didn’t change much on the KRD versus the CyBorD. 

What were the side effects from KRD?

By the end of KRD, I didn’t feel like going to the gym or anything like that. I think the side effects built up over time for me.

I was fatigued a bit on the CyBorD, but by the end of the KRD, I was really, really nauseous and tired.

Radiation

Describe the radiation

I had cancer in my bone marrow, but I also got three soft tissue tumors in my upper back. I had terrible pain from that. They did a CT scan and decided on a course of radiation therapy.

I did that once every weekday for two months. They were worried about them because the tumors were close to my spine. 

Fortunately, the radiation went well.

I responded really quickly to that, and it wasn’t that hard on me. I couldn’t tell how much it was adding to things. Later, I had more tumors in my lower back and one in my calf.

Autologous & Allogeneic Transplants

Chemo infusions (VDPace) before transplant

I did a bone marrow biopsy again after radiation, and everything was indicating that the cancer was still there. At this point, we’d already been planning a stem cell transplant. I needed more chemo before that, though.

I had to go inpatient for VDPace chemo. That was the intensive chemo before transplant. It caused all kinds of problems. 

Describe the allogeneic stem cell transplant

I had the autologous transplant, went home for about a month, and then went back in to get my donor cells. I had the second transplant with donor cells.

My donor was a young girl in Germany. Someone had to physically fly the cells over and hand deliver them. 

It’s really the same process, but I’m getting her cells instead of mine. I got sick, didn’t feel good, and then I started feeling better.

I got out of the hospital about a month later, and I had to be within 30 minutes of the hospital for 90 days, so I had an apartment. 

Graft versus host disease (GVHD)

I was taking a lot of medications to combat any GVHD issues. I had influenza B, and that was awful. I was probably sick for a month. Even when I was out of the hospital, I was having to go in every day for the first week or two. 

I had some GVHD in my mouth. Everything was raw in my mouth. About a year after the transplant, I got what they thought was graft vs. host in my left lung. For the most part, I managed through all that pretty well.

»MORE: Explore more on GVHD and what to expect from a medical expert

Follow-up protocol

I’m still taking chemo three days a week. I take a drug called Revlimid. I take a low dose of Prednisone every day.

I go in for a monthly infusion of Darzalex, which is a newer immunotherapy. It’s becoming more and more popular with myeloma because it does a good job of keeping the cancer at bay. I also get IV immunoglobulin, which just helps boost my immune system. 

For the last year and a half, my numbers have been good. I’ve felt great. I walk three miles a day. I don’t know that you ever get back to normal, but I’m doing well. I’ll just be doing this indefinitely unless it stops working. 

Are there any side effects with the Revlimid or Darzalex?

The Revlimid gives me some fatigue, but I tolerate the Darzalex pretty well. It’s expensive treatment, but I’ve been so fortunate.

I’m involved with some patient finance programs. I have some co-pay assistance. Since the first inpatient treatment, I haven’t been able to work. 

»MORE: Read more about benefits available

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How has cancer changed your perspective on life?

I’ve realized that somehow things just have a way of working out. I’m not sure how all the time. I have a pretty good idea, but I don’t know.

I’m not sure that all the planning and worrying I did about my health and finances was worth it. 

I just say what I have to say now. I was very much a people pleaser before cancer. Now, I just don’t hold back. I wouldn’t say I’m unfiltered now.

If I love you, I’m going to tell you I love you. If that makes you uncomfortable, I don’t really care. I need to say it. 

How has your wife handled everything?

I don’t even know where to start with her. She got the diagnosis first. That was hard on her. At that point, I think she just decided to stiffen up and not let her emotions get to her. That’s what she did.

She sold the house, and we moved. She was still working, and she was traveling to Denver to see me, trying to take care of our daughter who still lived at home, and so much more. 

How were people able to show their support?

The thing that we hated was when people would say, ‘Let me know what you need.’

To be honest, we didn’t know what we needed. If I have to spend the time to figure it out and tell you what I need, I might as well do it myself. Most people don’t know what to do. 

One of the big things for us was the food. I bet we had at least one meal a week for an entire year. That was amazing. The other thing was that our closest friends came to the doctor with us.

You have to know your friends pretty well and know if they’re comfortable with it or not, but ours were and came as extra sets of ears for us. 

My wife will go down the rabbit hole of research, and I begged her not to. Our friends would do research for us. They would go to appointments with us and be there to listen and ask questions. That’s clearly a level of friendship you have to know you have in order to do that, but if you do, that’s so helpful. 

My friends would come and hang out with me at my house once I was back home. They would come hang out for a couple of hours. That was awesome.

At the end of the day, I think the reason I got better was because I was fighting so hard for all the people out there supporting me.

»MORE:  What kind of support cancer patients say helped the most

How do you cope with the anxiety of living with cancer?

There’s a lot of different ways I manage things. One is with Prozac. I went for a long time without taking anything. I was crying so much. You could say, “It’s such a nice day. We should go for a walk,” and I would start crying. I can’t explain how much that happened. 

I finally went to my doctor and said, “I don’t know what’s happening, but all I do is cry.” They put me on a low dose of Prozac to see if that would help, and it did. I’ve been on that a few years. 

Any time I travel, I have some claustrophobia. When I fly, I get anxiety. I can’t get an MRI without having to be sedated. I didn’t experience that before.

Another thing that’s helping me daily is CBD oil. I get the purest strain I can find with no THC. I take a spoonful of that a day, and that helps.

I also have started a daily meditation right when I wake up. I’d tried meditation in the past, but it wasn’t until the last few months that it’s really started to click for me.

I did an 8-week mindfulness class, and that was interesting. It keeps you aware of the moment instead of getting out into the future. 

There’s no getting away from the anxiety, though. It builds and comes faster than you can even think. You have to find ways to cope.

»MORE: Read other patient experiences on yoga and meditation

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Multiple Myeloma Stories