When I had my first bone biopsy back in April, my biopsy sample was sent to the Mayo Clinic for chromosome analysis using Flourescence in situ Hybridization (FISH). FISH testing serves as a screen to prognostically stratify the risk of MM patients. My results came back with one favorable indicator and one unfavorable indicator. The positive indicator was a chromosome addition, called hyperdiploidy. However, the negative indicator was a translocation between chromosomes 4 and 14, called t(4;14). Unfortunately, the unfavorable indicator trumps the favorable one, so overall, my situation has to be considered high risk.
Studies have shown that patients with t(4;14) tend to have poor overall survival and short remission times. This knowledge has been weighing on my mind for some time now. However, one of the interesting presentations at the MMRF Patient Symposium we recently attended addressed this issue. Dr. Munshi, a colleague of Dr. Richardson at DFCI, gave a presentation where he indicated that the more recent front-line drug treatments, including Velcade and Revlimid, may partially overcome the t(4;14) risk factor. This seemed like good news, so I wanted to follow this up with Dr. Richardson when we meet with him next week.
I have a few other questions that I want to discuss with my medical team on Tuesday, so I decided to send Dr. Richardson and his team an email today with my list of questions, including the t(4;14) issue. To my delight and surprise, Dr. Richardson answered my email within 20 minutes! He said I am doing great (yahoo!), and he immediately answered the t(4;14) question by saying that the MLN 9708 is equivalent to the Velcade, and the Revlimid can overdrive the t(4;14).
This is really good news! As if I don't have enough reasons to be grateful that I am included in this clinical trial, it appears that I am also getting the best available combination of drugs to mitigate my most important negative MM risk factor. So far, I feel I have been very fortunate in every aspect of dealing with this disease.
This point was driven home to me even more so today. One of the people we met at the symposium, Sharon, has a husband with MM who couldn't attend that day because of his painful peripheral neuropathy. Gretchen called Sharon today, and I had an opportunity to spend some time on the phone with her husband. Chuck was also recently diagnosed with MM this past May. However, by the time he was diagnosed, he had severe MM symptoms, including three broken ribs, multiple bone lesions, and severe anemia causing breathing problems. For whatever reason, he didn't have the opportunity to enroll in the MM 9708 clinical trial, so he got started on the Velcade/Rev/dex initial induction therapy. Unfortunately, he quickly developed severe peripheral neuropathy, which is one of the common side effects of Velcade. Chuck now has a lot of pain in his arms and legs, to the point that he can barely function. As I mentioned in a previous post, the MLN 9708 does not seem to have Velcade's side effect of peripheral neuropathy. I have had no symptoms whatsoever to date. It's too late for Chuck to get into the MLN 9708 clinical trial, so he has to continue the treatment he is on. I really feel bad for him. I hope Chuck can find some relief from his pain. I can't help but think that I could just as easily be in his situation. So far, I'm counting my lucky stars.