Pat’s Place: Did Testosterone Therapy Contribute To My Relapse?
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.
Why now? Why had the doublet of subcutaneous Velcade (bortezomib) and dexamethasone (Decadron) stopped working?
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!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
I would get another check of my M-spike as soon as possible to see if the 0.5 is accurate. if it is,or if trending up I would indeed get the pet/ct scan and determine from there how you want to proceed. And I would quit the testosterone gel either way.
Coach Hoke
Pat ask your doctor if you can use an injectable testosterone. I have been using one for a few years now and one bottle last for ten months and my co-pay is only $10 per bottle and less than $5 for 10 syringes. They can teach you how to give yourself an injection in your thigh. I only have to do it once a month.
I'm with Coach: get re-tested, to confirm that the reading is indeed accurate. And if it is, I would quit the testosterone as well. As you say: we don't know enough about this cancer to be definitive about causation, and besides, there is already some theoretical linkage between stress and MM, and I would guess that testosterone is probably a stressor. I tend to err on the side of caution more often than not these days. I guess I don't really feel like I have much of anything to prove.
Isn't it the truth, eh? "Watchful waiting"... sometimes I feel like a hypochondriac.
Pat
Like yourself I have relapsed just shy of 2 years since finishing VMP. Almost 2 years without drugs was wonderful. My m spike went up from 0.01 to 0.2 to 0.5 in the last 6 months, so I am on Revlimid and DEX at the advice of my Oncologist.
I have not been taking any testosterone, just the normal progression of the MM. However I do live in a farming community and is it coincidental that my m spike started to rise during the prime herbicide and pesticide spraying season? I wonder if all the spraying restarted my myeloma? I don't use the stuff but the prime corn and soybean land around me get sprayed enough.
I would test out the advice to give the testosterone a vacation and see if you can beat back the MM with the additional chemo your Onc suggested. I wish you success in the fight. You are strong mentally and emotionally which is of great benefit to your readers, like me, and of course yourself. Take care.
Pat--sorry to hear about the possible relapse.
I've heard that testosterone contributed to some cancers, not sure if it was replacement testosterone or naturally occurring testosterone. It has something to do with making some cells grow faster, including cancer cells. Feel funny posting about something "I heard".
Good luck Pat.
Good advice, All. A couple of things. Yes, we are retesting next in three weeks. I'm reassured by a number of reliable sources that myeloma isn't a hormonal cancer, and bringing my testosterone levels up to normal shouldn't make a difference. But until recently experts were saying diet didn't make a difference, either. Here's an interesting extension of the original column title I wanted to use: "The Mystery of Cause and Effect." Stop testosterone now, things stabilize or improve. Was it a false reading? If I we add Cytoxan, is that it; or the fact I dropped testosterone? I'm going to email Dr. Alsina again and see what she thinks; we didn't discuss it at the time.
Hi Pat
I've been using topical testosterone now for several years, and remain in sCR. The testosterone has helped to slow my osteoporosis, and has contributed significantly to my QOL.
Anything's possible, I suppose, but I'd look for other possible causes in your case. Have you had any illnesses, flu, colds, etc? How about food sensitivities or lifestyle changes?
Sorry to hear of your difficulties. Best wishes for beating it back again.
FrankH
That's reassuring, Frank! You know your stuff! Someone from the IMF just emailed me, letting me know there should be no connection. Most likely cause is Velcade needs a boost. But next text should tell a lot. Thank you!
Dear Pat, sorry to hear about your M spike. Certainly rechecking it in a few weeks makes sense, along with checking your free testosterone level (the biologically active part). If it is normal, and you have received some benefit from test., I see no reason to discontinue it. Will you have some imaging studies? A PET/CT scan may be useful in determining where the active lesions are, if any. As you know, the factors influencing our MM progress (or better regress!) are complex. Best wishes, Jan
Patty-me-boy,a Mayo myeloma specialist recommended testosterone therapy for me..He said it may or may not help with the myeloma, but it wouldn't hurt..I didn't start the therapy because of cost..A .05 spike sounds low to me, what type of myeloma do you have?? IGG,IGA ?? Kappa or Lambda ?? Free light chain normal?? and do you have any deletions or translocations?? i.e 17p etc..I belong to an NIH study with Ola Landgren and I live near the Mayo in Scottsdale AZ. I'll be glad to ask the experts on your behalf anytime..
We just drove by Mayo Clinic in AZ on the way to visit Flagstaff a few weeks back. And I know Dr. Stewart there. Good spot! The M-spike issue for me is my sensitivity to bone involvement; last relapse I experienced measurable lesions--one that needed to be radiated--at 0.5. So my doctors take any increase very seriously. I was diagnosed in April, 2007. But it's clear my myeloma was active for several years prior to diagnosis. I'm a standard IgG Kappa. Yep, testosterone is expensive. Even after insurance approval (which wasn't easy) co-pay is $100 a month. Glad you are doing well. Thanks for reading!
Pat,
Following my stem cell transplant it was discovered my testosterone was gone. Not low-gone. I've been using injectable testosterone since then and am still in remission. Almost two years. Doctors stress that testosterone is crucial for bone development ( mine are shot). I have noticed a slight improvement in energy levels.
I think this is just coincidental Pat. I have never heard of tetsosterone being linked to MM progression.
Ron
Great article and great comments.
I'll have to look into why my testosterone has never been checked.
When I see the doc, I appear healthier than 95% of his other patients, so I think I do get shortshrifted.
So Stan, you must be one of the people that hear this like I do: "You don't look like you have cancer!" Or, "You look great! (for a guy with cancer!) Back to your point. YES! There is a prevailing attitude that as long as we keep you alive and you aren't complaining, we've done our jobs. I would have it checked. And there are two different tests. Maybe a reader can chime in and tell us why the second, more rarely used test is the better one to watch. My GP ran that for the first time and called me, saying, "We need to get you on testosterone supplements right away!" Funny, because I had been on him for years to do something. "But I look so good/healthy!" My thyroid is out of whack, too. All I know is one of these things--or both--must be contributing to my extreme carbohydrate sensitivity. One battle at a time, I guess...
Ross' point about benefits to bone strength are echoed by my editor, Julie. She mentioned it as we were preparing this month's copy, but since it wasn't one of the reasons I agreed to the therapy, we left it out. Good catch!
Hi Pat,
I was considering testosterone therapy some years ago for the same problems (decreasing muscle tissues and increasing "beer belly")but gave up the thought because my doctor discouraged it. It is 7 years since my diagnosis and I graduated to the Revlimid-stage about 3 years ago.
Instead of testosterone I started exercising with weights (which wasn't recommended) and after dexa-weeks and during them change my diet from carbohydrates to a protein-dominated one. Even the bread I eat is so-called protein bread. I reckoned that daily Marevan keeps my veins clean in any case. Of course, I take some vitamin supplements and lace my food with curcumin.
My strength increased, and I started doing shotput just for the fun of it and to see how far I can get. Now, at 61, I can beat many of my younger friends in that. I have even considered participating in Masters games.
I was pleasantly surprised to find out some time ago that my bone strength is not much different from anyone of my age. In fact, much better than at the time of diagnosis. I reckon that doctors don't often appreciate that bone strength is related to muscle strength: that the same stress that makes your muscles grow also adds to the bone strength, even though in the case of bone we don't talk about centimeters of bone growth, but those millimeter's or even less in the case of bone are important.
I also take my daily calcium and D-vitamin and some other vitamin supplies. I would recommend protein diet and doing those exercise which you can.
BR Steve
Great minds think alike, Steve. I started lifting light dumbbells back when docs said don't lift a phone book. And I'm strict low carb 24/7. I can do 40 push-ups (real ones!) but still thin; no muscle mass. Seems to be an improvement, even after six weeks. Doing light squats, leg extensions. Hip replacement no problem and has helped with pain. Walk several miles and swim laps four or five days a week. I was almost 5'9", 165 lean and mean. Now 5'7.5" and 148. With fat around my belly. Crazy! May be a thyroid issue, too. Readers that were former jocks can relate, others (and most docs) think I'm nuts; I'm alive after six years, aren't I? A lot of work just to maintain what I have. But when I stop trying... Not an obsession. I work out watching TV late evenings; swim when Pattie gets home 7 PM. Most just watching TV or doing Facebook, so it isn't like working out takes over my life. And life is good! Certainly a challenge for us, isn't it? Thanks for taking the time to exchange ideas!
Pat, praying this is just a blip and that retesting will show you are still in good shape.
I started testosterone while my urologist was waiting for my PSA to get to 4. Within 6 months it went from 3 to 4 and I had prostate cancer. So if you have BPH or elevated PSA you might want to think twice. I was lucky to escape the hormone therapy during radiation treatments that disables all testosterone production. But without a working prostate I can't process testosterone anyway.
MM is an autoimmune disease. Our immune system normally fights off cancers. Make sure your GP is communicating with your onc.
Best of luck, Pat.
GP communicating with oncologist. Great advice, Kent!
Pat, I am sad to hear Ur news on Ur M spike. My Dad just started shots for low T, I give him all his shot related to MM an anemia now this Low T , doc gave him 2x, now monthly it's all on me, NOW I am not wanting to! Or letting him by Doc also! I am going to read your article when He wakes in morning, he knows I read up on all MM THINGS an is now 70, diag at 67, thank for Sharing and I am a Myeloma Beacon reader!
Good Luck Pat u an All MM an cancer people I pray for cures an their health an souls every night
Daddy's girl Tracy
Good luck to you and your father. Sounds like he's a lucky guy to have you looking after him!
Pat,
Yes, I do get the "you look great for..." Which I actually like, unless I'm being shown the door at the doctor office.
Don't start playing major league baseball!! (There will be asterisks by your stats)
Seeing Sylvester Stalone in his mid 60's, totally ripped, did make me envious. (Even though he did "cheat" and use human growth hormone).
But you can't help but know that that muscle mass is helping support the bones.
I know that there will come a time--in the near future--when I can't move around much. I also understand that muscle breaks down much faster than we can build it up. But what am I/are we supposed to do? Give up? NO WAY! Thanks for your two cents!
How do you find out what kind of MM you have, mine is smoldering, should I have been told what kind I have?
Possibly. My understanding is "smoldering" isn't so much a type of myeloma as it is a description of early stages before myeloma becomes symptomatic. They should be able to create a genetic profile if it hasn't been done already. Glad you are only smoldering so far. Let us know what you find out. Good luck!