Any of this sound familiar? Ed was fortunate to live in an area where he had access to several different myeloma experts, with several different opinions about how he should proceed. Sort of the ultimate second opinion when someone like Dr. Durie is there to break the tie. Whether you decided to transplant right away or wait, there always seems to be a tug-of-war between the two options. And that hasn’t changed today, five years later. Yes, there is strong, documented evidence that a patient can wait to transplant without hurting his or her chances of success. But the initial decision still needs to be made. Do nothing, harvest my stem cells and wait or transplant immediately after induction. I have some other myeloma related news to share, so I will save the next installment of Ed’s journey until next week. Feel good and keep smiling! Pat
Transplant or Not: Should I Wait?OK. So now I’m a cancer patient. What next? I took some tests with a local oncologist and I was determined to be a non-secreter. I was also ranked on the ISS staging system as a being slightly into the Stage 2 classification. I reached out to a local physician who had been living with MM for about 10 years. We had lunch and he looked fit as a fiddle. He advised me that new therapies were being uncovered so rapidly that their successes had not caught up with the internet statistics. He gave me the names of two doctors at Cedars Sinai who were nationally known experts in the field of MM. I made appointments to see both of them. I first met with Dr. Jim Berenson. I was warned that Dr. Berenson is not in the mainstream of current thinking on myeloma treatment. He was vehemently anti-transplant. When I met with Dr. Berenson, he advised me that there was no evidence that the transplant improved anyone’s life expectancy or quality of life. He even suggested that it did more harm than good. He examined me, suggested that the new novel therapies of Velcade and Revlimid were just as effective if not more so than a transplant. And he mentioned that new therapies were around the corner. I advised him that I was a non-secreter and he advised me that this was both good and bad…. Good in that the secretions would not be fouling up my kidneys and bad in that tracking the disease would be a challenge. He also told me that because of this, I would probably not be invited to participate in any clinical trials. Then, he said something rather odd and disturbing. “I give you about 3 years.” To this day, I don’t know if he meant “3 years to live” or “3 years to relapse.” But it was a rather unsettling comment. Especially since it was so “seat of the pants.” Nevertheless, Dr. Berenson was an impressive, personable physician and seemed passionate about treating the disease. Plus, he had me sufficiently freaked out about the ordeal of the transplant that I felt I would prefer to think he was right. I then visited Dr. Robert Vescio. Dr. Vescio seemed much more low key, but was very much an advocate of doing the transplant. He felt it was the next best thing to a cure and even suggested that he had patients that had received transplants and were doing fine 10 years hence. I left his office completely uncertain whether the transplant would be the right approach for me. Dr. Vescio followed up with me about a week later–phoning me at home on a Friday evening at around 9 PM. I was impressed with his dedication. Two experts. Two completely different opinions. What to do? I scheduled a session with Dr. Brian Durie. Dr. Durie is an internationally known expert in the field of MM and, in fact, was one of the creators of the Durie Salmon Staging system. Dr. Durie recently retired from practice but still provided consultations. I spent about an hour discussing my issues with Dr. Durie. I learned that he was one of the doctors who trained both Drs RV and Berenson. His recommendation was rather “Solomonic.” He noted that the transplant was still considered the standard of care for a MM patient and endorsed Dr. RV’s recommendation. However, he also noted that, given what was going on in my life (I was having some rather severe issues dealing with a drug addicted daughter) he felt that the decision to transplant could be put off for a while and suggested I initiate treatment with Velcade and dexamethasone. He assured me that a transplant would be just as effective if done later as it would be if it was done today. That sealed it. I elected to go the Velcade/Dex route. I began taking Velcade in August of 2006. I received infusions twice per week for two weeks followed by a week off. My treatment days also included massive doses of the steroid dexamethasone. My first Velcade treatment resulted in flu-like symptoms (chills, night sweats) for one long night. By the morning I was fine. I never experienced those symptoms again. In fact, I tolerated the Velcade quite well. I continued on the program for about 5 months. During that time, I continued to work. There were probably 3 days overall when I felt so extraordinarily fatigued that I was falling asleep. On those days, I felt it was best to do something that would prevent me from sleeping the day away, for fear that I would not be able to sleep at night. So I treated myself to a round of golf, which allowed me to put one foot in front of the other and kept me awake. It worked out quite well. A bone marrow biopsy in December, 2006 revealed that the treatment had been very effective. There was no sign of active cancer cells. I was declared to be in complete remission and put on a maintenance dose of 40 mg of dex, once per week. Things remained that way for nearly 5 years.
Ed and his lovely wife, Susan