Pat’s Place: Did Testosterone Therapy Contribute To My Relapse?
Published: Oct 3, 2013 2:01 pm
I won’t bury the lead. Last week I learned that I’d relapsed yet again. The news was unexpected. After all, my monoclonal protein (M-spike) had been stable at a low 0.2 g/dL for over a year. Now it had jumped to 0.5 g/dL.
Most multiple myeloma patients are asymptomatic with M-spikes a lot higher than 0.5 g/dL. But that isn’t a good number for me. I developed bone lesions at that number following my stem cell transplant several years ago.
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?
Probably not. 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.
My testosterone levels had been low for years. Even though I understood that multiple myeloma is not a hormonal cancer, I was hesitant to start testosterone therapy, fearing it might negatively affect my myeloma.
But in July, my general practitioner called me at home, concerned about the latest test results. “We need to get you started right away!” he said. The concern in his voice was clear. I agreed it was a good idea.
I have voiced my concern over my inability to build muscle in past columns. Revlimid (lenalidomide) and dexamethasone have really done a number on my body over the years. Despite working out regularly, I was thin, yet carrying fat and retaining water around my middle. I had often speculated that testosterone therapy might help counteract the dexamethasone, helping me build my body back up. And after only six weeks, it seemed to be working!
In addition, a patient friend raves about how taking testosterone raised his energy level following his stem cell transplant. I can feel the difference, although I haven’t felt a jolt strong enough to get as excited as he does.
And speaking of getting excited, testosterone supplementation is also touted as a way to kick-start one’s libido. Again, I notice a slight difference, but that hasn’t really been a problem. Testosterone therapy, however, has not helped my chronic impotence, an unfortunate side effect of years of chemo-induced peripheral neuropathy.
But none of that is life or death type stuff. So I’m left with a conundrum. Do I continue to use testosterone gel, a therapy that seems to be improving my quality of life? Or do I give in to a hunch – some may call it superstition – and stop using testosterone, just in case?
Honestly, I haven’t decided yet. The co-pay on my testosterone gel is a whopping $100 a month; so, I’d be saving there.
This is likely a classic case of coincidence. One most likely has nothing to do with the other.
But what if it isn’t a coincidence? Is continuing testosterone therapy worth the risk, no matter how small? What do you think? I’d appreciate your advice.
In the meantime, my myeloma specialist has recommended we retest next month. Her conclusion? If the number stays the same or drops back, we hold the course. But if it goes up – even by as little as 0.1 g/dL – we beef up my therapy, adding cyclophosphamide (Cytoxan) to the mix. And she will immediately order a PET scan, even though I just had one in March.
I will let you know what we learn – and what I decide to do about my testosterone therapy – in next month’s column.
Watchful waiting. Don’t you love it?
Feel good and keep smiling!
- Blood Tests May Be Sufficient To Monitor For Relapse Or Progression Of Multiple Myeloma After Stem Cell Transplantation
- The Top Myeloma Beacon Patient And Caregiver Columns Of 2011
- Revlimid Maintenance Therapy Significantly Extends Disease-Free Survival
- Velcade-Based Therapy May Improve Outcomes For Myeloma Patients Who Do Not Respond Well To Initial Therapy With Revlimid Or Thalidomide
- New Review Looks At Treatment Strategies For Relapsed And Refractory Multiple Myeloma Patients – Part 2: Treatment Strategies At Relapse