Something remarkable happened yesterday in response to my monthly column in the Myeloma Beacon. Debbie Berns, leader of the International Myeloma Foundation’s (IMF) awesome phone counseling team, took time out of her busy day to email me some important information relating to my relapse.
I was working on what I had planned to be today’s post about the Multiple Myeloma Research Foundation’s community patient outreach initiative, the MMRF Community Gateway that launched last week. I’m going to delay that report one more day so I can share Debbie’s info today.
The column, Pat’s Place: Did Testosterone Therapy Contribute To My Relapse?, centered on the news that I had most likely relapsed again after remaining stable for a year.
I originally wanted to title the column, The Mystery of Cause and Effect. The premise: “Why now? Why had the doublet of subcutaneous Velcade (bortezomib) and dexamethasone (Decadron) stopped working?”
I continued to explain that, “Like many of you have probably done, I started to speculate. Had I done anything different? Was there anything I could have done to have prevented my relapse?”
Maybe if I would have taken more curcumin along the way? Maybe 3 gm daily wasn’t enough. Or what about ursolic acid? I recently ran out and didn’t replace it; I had been taking ursolic acid the day before and after my Velcade sub-q injections.
“But then I remembered; I had started using testosterone gel two months before. The timing of my relapse seemed suspicious. Was there a connection? My doctors say no. But do they really know? So much about myeloma is still a mystery, even to the experts.”
I then explain why I started taking testosterone in the first place–to help me counteract the muscle-wasting effects of taking dexamethasone weekly and hopefully improve my nonexistent sex life.
Comments and emails from helpful readers came flooding in. The column just broke yesterday afternoon, yet I have already received a dozen emails from readers, sharing their well wishes and suggestions.
The almost unanimous conclusion: dump the testosterone! Fair enough. But listen to what IMF patient counselor, Debbie Birns, had to say:
Read your blog, and if it will help you not to beat yourself up for the testosterone, I found an old article (1988) that states that although myeloma cells do have estrogen receptors (we knew that), there are no androgen receptors on the 13 myeloma cell lines tested. Here is a link to the abstract: http://www.ncbi.nlm.nih.gov/pubmed/3260311
Hope this helps, Pat. I am sorry to hear about the relapse, and know that you still have many viable “lily pads” before you as you battle on.
Debbie Birns, Hotline Coordinator
International Myeloma Foundation
After reading the abstract, I had trouble coming to the same conclusion. See what you think:
Estrogen and progesterone receptors in some human myeloma cell lines and murine hybridomas.
Department of Human Biological Chemistry and Genetics, University of Texas Medical Branch, Galveston 77550.
The control of immune responses by sex hormones is well documented but the effect of sex hormones on lymphoid cell subsets is poorly understood. We have investigated the expression of receptors for androgens (AR), estradiol (ER) and progesterone (PR) by human cell lines of the B lymphocyte lineage and by murine myeloma or hybridomas. AR, ER and PR were determined by cytosol and nuclear binding assays. Eleven human lymphoblastoid cell lines obtained by in vitro infection of blood or tonsil B cells with Epstein-Barr Virus (EBV) B95, did not express AR or ER. Similarly, 10 Burkitt’s lymphoma cell lines were AR, ER and PR negative with the exception of the pre-B RAJI cells which bear AR. Among 13 cell lines derived from patients with multiple myeloma none expressed AR but five were found to bear ER (20-164 fmol/mg DNA or 5-10 fmol/mg protein). Four of the latter group also bear PR (86-450 fmol/mg DNA). Two mouse hybridomas out of seven tested were ER and PR positive. The MOPC 315 myeloma expressed ER but not PR. The possible functional role of these sex hormone binding sites in cell proliferation and immunoglobulin secretion deserves further investigation.
- PMID:3260311[PubMed - indexed for MEDLINE]
But if Debbie says this helps prove that therapy isn’t a big deal, I trust her judgment–and the judgement of my medical team at Moffitt Cancer Center and Florida Cancer Specialists–who all reassured me that multiple myeloma is not a hormonal based cancer.
I started using testosterone gel six weeks before my M-spike jumped. Is it patient superstition that leads me to a conclusion of cause and affect? Or just an unfortunate coincidence?
I’m still using the gel as I decide what to do. In the meantime, our lifestyle columnist, Danny Parker, has emailed me a reminder to stay on the supplement regime–including ursolic acid–that we decided upon last year.
Can’t hurt, right? Feel good and keep smiling! Pat