[goldmine848]

Post-ASCT for the physically active

by goldmine848 on Thu Sep 26, 2013 8:04 am

Short background: I am 60 years old and was disgnosed with Stage III multiple myeloma at the end of June. I immeditely began VRD treatment and now am at 92% reduction if myeloma cells. All other numbers are very good.

Before the onset of symptoms in mid-May I was extremely acvtive: double workouts during the week and 3-4 hour bike rides at a strong pace every Saturday and Sunday. Weekly cycling mileage during March-October was 250-300 miles per week.

Shortly after I began treament I developed severe pelvic pain to point where I could barely walk let alone engage in any significant physical activity. That lasted through the early part of August. As I gradually felt better I began to increase my activity. I am feeling very good now and I believe that I could, if my condition remains the same, get to my prior levels of activity over a relatively short period of time (with the except of any heavy weight lifting).

My doctor is strongly encouraging that I undergo an ASCT and, although I plan to seek a second opinion, I think it is likely that I will go forward with the transplant in January.

I realize that this will take a serious toll on me physically and that it will take months to recover. What I wonder is whether I can expect to eventually be able to resume my previous level of strenuous physical activity.

Any insights from personal experience will be appreciated.

[lys2012]

Re: Post-ASCT for the physically active

by lys2012 on Thu Sep 26, 2013 10:31 am

Hi Goldmine,

Many of us have had transplant and have recovered and went back to being active, and doing the things we love (including biking, and physical activities)

read through this thread and you find some inspiration

https://myelomabeacon.org/forum/biking-with-multiple-myeloma-t1002.html

After my transplant I was very weak and tired, but when I started back to working out (very slowly at first) It had a very positive impact on my recovery.

I did a 225 km charity ride a year after my transplant, which was a huge motivation for me to get back into shape

was your pelvic pain bone relateed? the bone meds help this kind of pain trememdously (for me was back pain)


Lys

[goldmine848]

Re: Post-ASCT for the physically active

by goldmine848 on Thu Sep 26, 2013 12:37 pm

Thanks Lys,
Yes I have read that thread; It was quite inspirational when I still was in pain and inspired me to try riding even while I still had some pain.

My pelvic pain was bone pain and I think it was a reaction to Zometa. I switched to Aredia and have had no ill effects.

[Andy D]

Re: Post-ASCT for the physically active

by Andy D on Sat Sep 28, 2013 5:10 pm

The areas of most bone pain for me were my sternum and ribs. Both were so severe at time of diagnosis that I was unable to even jog 100 m, much less run. Two months prior to that, I had run a respectable marathon time.

After induction therapy of CyBorD, I was back to running, but after 5 months, M spike turned around and started back up and I found that there had been bone damage (compression fracture) of spine. I was completely out of running until after ASCT in Feb this year.

One month after the transplant, I ran a 5K. Three months after, I did a hilly 100k on bike. I ran a half marathon race last weekend in just under 2 hrs. Did 20 hilly miles running yesterday in a 3 hr training run. Not exactly great pace, but at least I can keep moving. Pain is NOT gone and probably never will be. But it is tolerable enough to keep moving. Did not achieve remission from stem cell transplant. Am now on Velcade BUT, no dex. Doc has agreed to hold Dex until numbers are no longer stable. Dex gives me a great "rush," but does not - for me - allow for the training for endurance level activity.

Dex is great for reducing PN and making chemo more effective (and masking inflammation pain). But, not very good for people trying to be very physically active - in my opinion. Might be something you can discuss with your doc as you move forward.

I really, really wish that I moved pain-free and with the fluidity that I once had. But... reality is that I am very happy I can move at all.

[goldmine848]

Re: Post-ASCT for the physically active

by goldmine848 on Sun Sep 29, 2013 9:09 pm

I appreciate the information/advice. Dex 40 mg. once a week is part of my treatment for now. It is hard to isolate that from the other factors but it does not appear to affect my ability to work out. Did a fairly swift (at least for me right now) 70 mile ride today and felt fine afterwards, so making some progress. The main concesstion I am making right now is to not yank on the bars when climbing because that fires up my rib pain.

Just good to know that if I do the transplant there is at least a prospect that I can go back to working out hard again.