Recovery Post Bone Marrow Donation

[Possegal]

Good for you, but we do understand your conflicts and the fact that 'thinking out loud' on a message board is always helpful.

Just had to add that my family is originally from Hamilton (when I saw on your posts where you are posting from).

[kat_h]

My sister-in-law donated a few years ago. At the time was playing on UCLA's waterpolo team and I don't think she missed much training time for it. I'll ask her about it as soon as I can, but she's hard to get ahold of right now.

[firenze11]

After my Mom's cousin told us he had leukemia, I decided to join the registry, too. His sister ended up being a match, but unfortunately he got Graft versus Host Disease and recently passed away. So first of all, thank you so much for joining the registry! It is unfortunate you can't time your donation, but if you are a match I hope it will still be rewarding for you.

I did a lot of research to see what the donation process would be like and tried to find as many donation stores online as possible. It all really depends on the kind of donation you end up doing. If you do the "classic" bone marrow donation where they drill into the hip I've heard it takes around two weeks. Marrow.org suggests you could be back to "regular activity" in a few days. I'm not so sure about that. Here's some experiences from people who have done it: http://www.transweb.org/people/marrow.htm
http://www.marrowdonor.net/

If you do a PBSC donation the recovery time is a lot quicker. I think my Mom's cousin's doctor said it was becoming a preferred method. This is the donation his sister did. Apparently the shots and days before donation are the worst because your bones can ache from stem cell production. The time on the apheresis machine is supposed to relieve the pain. My Mom's cousin, who is actually in poor health, said she felt tired after her donation and felt like "she'd climbed a mountain." I think she just rested a few days. You would probably have a much quicker recovery. Other stories I've read suggested once the procedure was done everything could go back to normal. Here's one detailed account: http://tinyurl.com/2pwwtf

Hope this helps a little bit. I'm sorry I don't have any first hand experience especially from an athlete standpoint. Good luck with everything.

[maillotpois]

Interesting side note - if you do the stem cell thing, and you take Neupogen (EPO), then your performance may actually benefit

[Trek420]

Interesting side note - if you do the stem cell thing, and you take Neupogen (EPO), then your performance may actually benefit

But you'll be banned from the TdF

[firenze11]

Interesting side note - if you do the stem cell thing, and you take Neupogen (EPO), then your performance may actually benefit

Wow I never put two and two together. I know someone taking Neupogen for another illness and knew basically what EPO is but never made the connection. I wonder if the dose for "performance" is way lower than stem cell production. I can't imagine bone pain being much fun to deal with.

Up here there's a big push to get people from all different ethnicities to join the national registry. When I finally got a call back from the nurse she apologized for how late they were getting to me because they were so backed up with people joining. So that's really great. Hopefully it will make a bit of a difference.

[Possegal]

The drug is Gleevec and it really has changed the treatment of chronic myelogenous leukemia dramatically. I was involved from a regulatory end in its approval for use in the US. It isn't a cure, but it is a treatment that is better tolerated than the previous standard therapy and people have responded to it for many years.

[Possegal]

Also - if you donate peripheral blood stem cells, you won't take an erythropoetin compound (EPO) (something like Procrit, which stimulates red blood cell formation), you will take neupogen, which is a different compound acting in the blood system. It mobilizes peripheral blood progenitor cells. Don't quote me, but I don't think neupogen is banned, but I just did a cursory look at WADA's list of agents and didn't see it on there.

OK, I just did a little search and every marrow donation site refers to neupogen use, but in 2007 the FDA labeled the drug to NOT be used in healthy subjects donating marrow due to some risks involved with its use in this setting. It looks like the label approved in Sept of 07 says that this is not an approved use of the drug. So not sure if it is still being used in this setting or not.

[maillotpois]

OMG.

One of my DEAREST cycling friends was saved by Gleevac. When we met him, he was a shell of a man. Near death. Gray, thin, feeble. There was no match for bone marrow and no cure for his CML. He started the then-experimental treatment (in 2001) and went on to complete several centuries with us. (I understand that the research for Gleevac was funded to some extent by Leukemia Society funds, which is significant to us because over the years our family has raised over $50,000 for TNT as well as supporting the fundraising efforts of those we've coached.)

Anyway, back to Phil. This man is so wonderful that while listening to him spin a tale during the Tahoe century in 2002 or 2003 (he often sang while we rode), I became so distracted I rode into a pole!

Unfortunately, last year, Gleevac started losing its effect on him (BAD), but it gave time for him to finally find a bone marrow match (GOOD!). He's recovering slowly now. A BMT is by no means an easy road. Anyway, that Gleevac saved his life and gave him 6 - 7 YEARS of being what I deemed a "stud muffin".

Thank you, Possegal. I'm tearing up a bit as I write this. Thanks for giving us Phil back.

[iowagrad]

Interesting side note - if you do the stem cell thing, and you take Neupogen (EPO), then your performance may actually benefit

Actually, Neupogen (filgrastim, G-CSF) is a completely different drug than EPO. Neupogen is given post-chemotherapy to increase the white blood cell count. In stem cell collection, it is given in larger doses in order to boost the white blood cell production to ridiculously high levels - to the point that the immature stem cells overflow from the bone marrow into the bloodstream so they can be collected via apheresis. Most people using Neupogen don't feel the greatest. EPO works differently and boosts red blood cell production.

As far as the bone marrow donation, go for it. It really shouldn't affect your training all that much, especially since you're in such top form right now. You'll be sore and most likely a bit anemic. My friend donated on a Thursday (I think) for her brother when we were in high school. She was back at volleyball practice on Monday afternoon and going strong.

I've been on the registry for years and think it would be pretty amazing to get the call to donate.