Skip to Navigation Skip to Search Skip to Content
Search All Centers

Making Treatment Decisions With Advanced Myeloma

Read Transcript

Published on January 30, 2020

Key Takeaways

  • Seek out a myeloma specialist to consult with before starting treatment.
  • Lifestyle factors, career and personality can influence myeloma treatment decisions.

Patient advocate Alan Stephenson shares his treatment journey after being diagnosed with advanced multiple myeloma. Alan gives a firsthand account of consulting with a specialist, making care decisions, treatment and recovery. Watch to hear his experience with tandem stem cell transplants and why he decided on an aggressive line of therapy.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc, Celgene Corporation Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control. Patient Power is solely responsible for program content.

Featuring

Partners

Patient Empowerment Network

You might also like

Transcript | Making Treatment Decisions With Advanced Myeloma

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Alan Stephenson:       

I was diagnosed in 2016. I was very far along, and the myeloma was very advanced. And when I was first diagnosed, I was put in the hospital and nearly died in the hospital because of some pain meds they gave me. It just shut down my digestive system. But anyway, everything happened really fast, because it was so advanced. I really didn’t have much time to make decisions. We found it because my L5 vertebra had collapsed. I found out I had fractures in every vertebra, clusters of fractures in my ribs, 147 lesions on my bones, and 60 percent of the cells in my marrow were cancerous. 

Like I said, it was so advanced I really didn’t have much time to make plans, but I went through two rounds of VDT-PACE. I went to a myeloma clinic that specialized in multiple myeloma. I did two rounds of VDT-PACE, then tandem stem cell transplants, then 16 rounds of Darzalex or daratumumab. Then they told me I was in remission and then went on maintenance treatments. I did ixazomib (Ninlaro) and dex (Decadron) and—oh, lenaomidomide (Revlimid). That’s what it was. I did that for about seven or eight months. And my blood counts were just staying so low that they finally took me off that. My white count would never get over about 1.5 to 2. So, then I went back on the Darzalex, and that’s what I’m on now. I’m in stringent remission.

Cindy Chnmielewski:                         

You had double transplants? Was that tandem transplants?

Alan Stephenson:       

That’s correct, about 60 days apart.

Cindy Chmielewski:    

Can you talk about how you decided and why you decided to have such an aggressive line of therapy?

Alan Stephenson:       

Well, I think part of it comes to my personality type. I’m a business owner, and I’ve been fairly successful in life by surrounding myself with people that know way more than I do and letting them do their jobs. As I said in the beginning, things happened so fast with us we didn’t have much time to make decisions. And we were sent to a myeloma center. They specialize in multiple myeloma, and I feel like it’s probably the best in the world. But, of course, I guess everybody feels that way about where they’re treated, but my doctor was one of the top people in the world that specialized in multiple myeloma. He’s a clinical research scientist. And he told me how bad it was, and he said we’ve got to treat it aggressively. But if we do, we feel like we can get you in remission.

And, you know, I really—when I first met him, he introduced himself by his first name, and I liked him, and I trusted him. And I had done a little bit of research on him, and I had just decided to do what he said. And it really made it—in many ways, it was easier for me because my situation was so bad that—and I know there are people that have had way worse than I have. But it was urgent that we make decisions. I didn’t really have a lot of time to think about it. So, I just surrounded myself with really good people and did what they said.

Probably the only decision I’ve really had to make is between my first transplant and my second. And like I said, they were only about 60 days apart. I did really well recovering from my first transplant. They released me to go home 14 days after my transplant, which they said was fairly unusual. The day I got home, I got C. diff And I was brutally ill, and then I got the flu. And then I got C. diff, and then I got the flu again. So, basically out of a two-month break, I was sick for a month. 

Cindy Chmielewski:    

Oh my gosh.

Alan Stephenson:       

And when I went back, he told me—he said, “Look, I know you’ve had a hard time. So, we can go one of three ways. Your test results were very good, so we can either let you go home for a couple weeks to recover.” Of course, he knew I had to run a business too while I was going through all that. And he said, “Or, we can do a reduced dose of melphalan, or we can just give you the full dose.” And I’m an idiot, and I said just give me the full dose. So, that also says a lot about my personality card.

But anyway—so, I don’t have any regrets. It’s taken me a long time to get back on feet, but I live a pretty normal life. About four or five weeks after I got home from my second stem cell transplant, I made arrangements to continue a family tradition of going fishing with my dad and my sons in South Louisiana. And I looked like a ghost honestly, but I’ve forced myself to do a lot of things I didn’t feel like doing so that I could recover.

Alan Stephenson:       

I had to make the decision about going on maintenance. And I have a lot of friends with multiple myeloma, and some of them chose not to do maintenance. I guess, once again, it goes to my personality type. The first thing I asked my specialist was, “If you were me, what would you do?” Nobody knows better than he does. And why would you do that. And he told me, and then the other side of it is—going back to my personality, I’m more likely to do the most aggressive thing to go ahead and get it over with. And that’s kind of why I decided I should finish my maintenance. They originally scheduled three years of maintenance for me. And I should finish that in January or February of next year. 

Cindy Chmielewski:    

So, it was trusting your specialist but asking why he chose that treatment.

Alan Stephenson:       

That’s correct.

Cindy Chmielewski:    

But your personality is—go for the gusto there.

Alan Stephenson:       

Yes. And the other side of it is that right now I’m an 18-year-old in the body of a 70-year-old. I’m actually 52, but I figure I can handle the more aggressive treatments right now than maybe I could 10 years from now. I’ve got kids. I’ve got a grandson. And I figure if it means me doing the most aggressive things so I can be with them longer, I don’t mind doing that.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

You might also like