Arnie’s Rebounding World: Induction Therapy With VAD
In my first column last month, I discussed my initial diagnosis of multiple myeloma as well as my decision to have treatment close to home and to go with a less aggressive approach. Once this decision was made, it was time to move forward.
I was anxious to get going with treatment: get treated, go into remission, and be done with this whole thing, or so I thought. I know, I read all about myeloma being incurable, but deep down I felt I could be different.
At the time I was diagnosed 5 years ago, Moffitt was doing a study for newly diagnosed patients. It used two different protocols for induction therapy prior to stem cell transplantation, and I was given a choice of protocols.
One option was the standard therapy at that time and used traditional chemotherapy; known as VAD, it included vincristine, doxorubicin (Adriamycin), and dexamethasone (Decadron). The other option included thalidomide (Thalomid), which was fairly new at the time, and dexamethasone.
I mention this for two reasons.
The first is how was I going to decide between these two options? The team at Moffitt did not seem to strongly favor one over the other in terms of the results. However, one of the biggest problems with thalidomide was the side effect of peripheral neuropathy (tingling and pain in the extremities). I was a surgeon, planning to go back to work as soon as possible, and this was potentially a big problem. My doctor factored this into the decision and steered me towards VAD.
Wow, I was impressed. They were actually considering me as a person in the decision and looking toward a life after treatment. This was the way I was going to go.
The second reason I mention this is to illustrate how rapidly multiple myeloma treatments are changing and how far we have come. Neither of these treatments is really even used any more. They were, in fact, considered outdated almost as soon as I finished my initial treatment.
Most of the new up-front regimens, of which there are many, include at least one or both of the newer, more active drugs, Velcade (bortezomib) and Revlimid (lenalidomide).
Do I feel that I may have missed out on something by not receiving these treatments up front? Maybe a better initial response? Maybe a longer remission? Who is to say?
The good news about myeloma treatment is that if you don’t receive these drugs up front, they are available in the relapse setting.
For four months, I went through induction chemotherapy with VAD, one week on, three weeks off. I continued to work during the weeks I was not on chemo. I had no bad side effects, and the results were encouraging. My M-spike (monoclonal protein level, which is a measure of the amount of myeloma protein in the blood) dropped from 7.5 to 0.5. I had already achieved what is known in myeloma speak as a “very good partial response” (greater than 90 percent reduction in disease).
I was ready to move on to the thing that all the suspense had been built up over, the stem cell transplant, which I’ll write about next month.
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Please let me know about your stem cell transplant , stop the mystery !! lol
Dear Dr. Goodman, Yes, you have certainly built up the suspense for me! I will begin the process of harvesting of stem cells in April and will have the stem cell transplant May 12th at Baylor transplant center in Dallas. I look forward to hearing of your experience, especially your recover. Linda Mc
Dr. Goodman-, I'm interested not only in the medical but in the "psychological" side of the next therapy step. How did your yong family took it? What about stress and fear? Do you have a strategy to cope with that items? (Sean Murray's L-Spike) Of course, that's very personal. But you could help me/us a lot. Thank you, Peter
Dear Dr. Goodman-, I would be very interested in how myeloma affected your job during your story. You wrote, that you had to stop working after a couple of years. What do you think, when should one leave the job (if you like it, of course) and at which time is it reasonable? For me it is an experience that I feel good, when I'm busy (never forgetting myeloma, just feeling kind of "normal"). Thank you for your insights, Tom
Thank you for your comments. I will definitely be writing about my stem cell experience next month. The decision as to when to stop working is very difficult and I was planning to go into greater detail about that later. I did go back to work as soon as I had recovered from my stem cell transplant and continued to work for about 3 more years, until the side effects of the meds that I was on at the time made working difficult. I did go back to work with a different attitude. I tried to slow the pace down and reduce stress. There are many factors that weigh into the decision to stop work, the status of your disease, what type of work you do, how much your work "defines" you. There are also financial and health insurance considerations. If you are feeling good and enjoy your work keep going, but don't let work be all consuming. More on that later.
My husband worked throughout his treatment in Arkansas with Total Therapy, Tandem Transplants. He is a telecom executive, so it was possible for him to continue to manage his team through conference calls, email, telephone. Arkansas has a full service campus for patients needing business offices and services. This is not a scenario all patients enjoy. For many this would have be out of the question. Please realize that he had some pretty down days where he did very little if anything. We specifically, and strategically planned his initial treatment (collection & first SCT) during the Thanksgiving thru New Year's holiday, as many are taking time off to be with their families. (Another fortunate part of his disease, he was stable, we could plan our treatment time.) Our hope was that Dave would have lots of days to disappear off the radar without it causing disruption or difficulty for his company. It was an all encompassing effort. We were not unique in our lack of preparedness for such a dx. We had two kids in college, had just moved from one coast to the other, where I had resigned my job. We depended on Dave's income as a family as well as our healthcare. It was imperative for us, if possible for him, to be able to keep working. He is my hero.
The humorous side of this was his expert handling of chemo brain. When a co-worker or colleague would call, all of whom knew he had cancer and was being clobbered. He would say very confidently, "Could you refresh my memory on this?" Everyone gladly did and he was able to negotiate this very rough time.
Getting him to get dressed and go into his office was more problematic. He didn't seen the need. I knew he needed to for a whole host of reasons. For himself, his confidence, and so his colleagues and subordinates could physically see that he was OK. We set it up for him to go in and stay as little or as long as he needed or wanted. It was good for everyone's morale. Sometimes, you have to push a little to get over the hurdle. When to push and when to stay put is indeed the challenge.
I have to say that VAD worked well for me back in 2003-04 and I am here to tell about it. I too am saving the newer drugs for "later." Sometimes a serious diagnosis gives one a moment to reconsider whether going along the same road is the way to go...or is it better to make a few changes? It's so individual and unique to each person.
Good articles, Arnie. You have handled this challange in your life with quiet determination, which has been inspiring to many people.
Can you put me on a list so I will receive them monthly.
Dennis
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