Last week we caught up with allogeneic stem cell transplant recipient, David from Tampa. He’s doing well, but the allo did not wipe out his myeloma–and his new immune system still may not recognize it as an invader. Today let’s hear from Tom. Like David, Tom’s doctors tried an allo as a way to hit his difficult to treat myeloma hard. And like David, it didn’t work as well as hoped.
I think David downplays how difficult his recovery has been. By any measure, he’s had a much easier time of it than Tom from Ohio. He’s had a heck of a time, battling debilitating side effects for more than a year.
I’ve written close to 30 posts about Tom and his allo transplant journey. Simply type “Tom” into the long, dark query bar located at the top right of the page and they should all pop up if you’d like to review what he’s been through.
Thank God, Tom is finally feeling a lot better. Here’s an email update he sent me a week ago:
I’ve been following your progression. You are one tough son of a gun. Keep it up. Whitney and I talk about you so often it is as if you are our neighbor. Funny since we’ve never met. Short of being locked in ICU like last year, I can guarantee you that will change when we come to the next Beach Party.
I thought I’d give you a quick update on a couple things. First, my M-spike continues to rise. I am at 0.71 as of last week. I don’t know what to think of this. I don’t feel any worse, and I don’t feel any new lesions. But obviously this is not the outcome I was looking for. In June my maintenance Rev was increased from 10mg per day to 15mg. With this came some GI issues, primarily severe bloating and diarrhea. I was on 25mg for years with no significant side effects, so my new sensitivity is being blamed on the transplant.
As a result of the increased M-spike and the stomach issues my team here recommended I switched from Rev to pomalidamide. I’ve never been on pom, so I’m curious to see how it goes. I’ve also been advised to stop taking Imodium. Instead I’ve been prescribed Lomotil. I’m told this is a narcotic that stays localized in the stomach and helps fight diarrhea. I’ve been on it for a few days and so far it seems to be working. Received my pom today in the mail, so hopefully in a few days the stomach issues will be resolved.
Finally the most interesting development; at least I think its the most interesting. For months I’ve been complaining about an increased level of fatigue. Now remember this is an increase in what was already a pretty high level of fatigue. I just chalked it up to trying to be more active. I also noticed as I did my physical therapy to recover from April’s muscle problems I wasn’t progressing. No matter what I did I could not get any muscles back. I attributed this to my prolonged usage of steroids. Finally, my mental sharpness was not improving. I figured this was Revlamid and all the other drugs I’m on working against me. I mentioned all of this to the transplant docs a couple times, and like me they felt there were explanations for all of my ills.
Finally I couldn’t take it any more and started researching my problems. I found I kept being directed to low testosterone websites when I put in my symptoms. Last week when I had my visit to the Clinic, I asked the docs to run a testosterone test. They did but told me they were pretty sure that was not the problem. Well, turns out they were wrong. I’m told the low end of a normal T level is somewhere between 250 and 350, I guess there is some debate as to what the right number is. Either way it doesn’t matter, because the day after the test I get a call from my doc and he told me I hold the record for the lowest total testosterone number he has ever seen: 25.
I don’t know if this is the cause of all my recent problems, but I bet it is having some impact. I’m seeing and endochrinologist next week.
Hang in there,
Tom, the same thing happened to me! Using a testosterone supplement like AndroGel hasn’t changed my life, but I do notice a difference. I think if I used it more aggressively–and my T levels were monitored more closely–it would make an even bigger impact. I think my muscles are responding a bit better now. Not sure if I have more energy (dex and other meds make it hard to tell; I’m taking a drug for low thyroid now, too) but I’m betting it really helps you.
Sometimes the co-pay is high, but don’t let that stop you. Get your thyroid checked, too. This is all part of the constant battle I feel I’m having with my doctors: to take seemingly small, quality of life issues more seriously. As I write so often, it isn’t enough just to keep up alive anymore!
Back to the myeloma. I’ve been corresponding with David, convinced that stable in myeloma is what counts. Tom, if I recall correctly you were having trouble controlling your myeloma before the transplant. If its easier now–and if things stay steady for a significant (years) period of time–who’s to say your transplant didn’t work?
I know you and Whitney (and the kids) have been through so much. I’m ecstatic you’re starting to get your life back!
Tom’s wife, Whitney, is a caregiving superstar. She was kind enough to forward us this picture of Tom and the kids on vacation this summer in Chicago:
And for everyone else, there’s a lesson to be learned here. We all want to be the exception: in this case, the 15% that responds so well to an allo that their myeloma disappears for a decade or more. But David and Tom are examples of the more likely result: mixed at best.
I think about this type of thing when people cavalierly suggest I try a tandem auto. Like David and Tom, there are no guarantees.
It isn’t fair, is it?
I want to close with this thought. To me, David and Tom are myeloma heroes. They have put themselves through hell and back (with ongoing, lingering side effects) to try and be there for their wives and young children. It hasn’t been easy.
If that isn’t the definition of a hero, I don’t know what is!
Feel good and keep smiling! Pat