Recovery Post Bone Marrow Donation

[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.

[Possegal]

Thank you for sharing that. Years ago during a press conference for the announcement of the approval, a man approached my boss and I and asked who we were in all of the crowd of those involved. He told me something to the effect of "a year ago I was told to start planning my funeral, and now I feel better than I have in years, so thank you for what you did". (and trust me, I was just one very small part, but we all did in 72 days from the time in the door until the approval, what we are mandated to do in 6 months, it was a very tough 72 days for all involved.) Anyway, as I walked away from this guy, rather speechless which as folks on here may notice I am seldom speechless - my boss quietly said to me, on those days where you wonder why you do what you do, remember how you feel right now. Again, I was a small part, and any scientist of my background could have done it, but it was a very big deal to be a part of it.

It is always nice to hear a good story. Yes, it will not work forever. There are new drugs on the market that were tested for Gleevec-resistant CML, so there are options. But it is seen more as the thing that can buy more time until a marrow match is found. I'm glad your friend found one and do tell him I wish him nothing but health and happiness and many wonderful roads ahead of cycling. And thank him too for reminding me why I do what I do (cause it sure isn't for the fame and fortune )

My friend who I spoke of earlier, when I said to her "well what is this girl taking" and she told me, and I asked her if she realized I had been involved, she basically just teared up and the conversation stopped. But then I came back to my town and I had an email from her saying she couldn't talk about it with her daughter around as she wants to be strong in front of her, but that she wanted to say that my co-workers and I do something quite important and she wanted to thank us for all we did. Sometimes it is nice to hear that. As the feds, we are too often the bad guy. I understand it, everyone needs someone to blame and we're a big target, but sometimes it does hurt. Case in point, my sister is now on a lung cancer drug that was also part of my work. I defy some of my work's detractors to tell me I'm not trying to cure cancer, or that I don't care. It's my sister's life we're talking about here!

One other off the topic story - and sorry to take the thread drift further. I rode in the LiveStrong bike ride last August and felt myself compelled to go introduce myself to a group belonging to a team called the Pharma Peloton. I said, are you all pharmaceutical industry folks, they said yes, I said "FDA". The all shook my hand and one guy said "you guys do a very difficult job and you don't get nearly the credit you deserve". I was shocked, I literally stammered out a "wow, man, really, thank you!". They then pointed at their jersey, which had the name of a chemotherapy drug on it and said that the one guy riding with him, that drug saved his life. He was diagnosed 3 yrs ago and that day rode a 60 mile ride. He told me "thanks to you guys for this drug". It wasn't one of mine but I promised to pass it on to the folks involved, which I did in a mass email to the office about this experience. Many folks thanked me for sharing it as it is sometimes nice to hear the occasional "good job".

Ok, back to bone marrow donation - still no email response from my friend, not sure how often he checks his email though, but I'm sure I'll hear some details from him soon and I'll pass them along.

[spindizzy]

Firenze-

Thanks for reminding me about stem cell transplant and the link - I had totally forgotten about that method...

I'm sitting here waiting for my interview call, reading stories and experiences that everyone has written and tearing up (which I do quite easily...)

In Ontario, the "age limit" for donation is 50. Guess who'll be 50 next month? If I am fortunate enough, and a match, it will really be a cool birthday present - quite the way to celebrate the half century mark.

[crazybikinchic]

I did not donate bone marrow, but I have made a life saving donation. Four years ago last month, I gave my husband a kidney. It is something that I do not regret. My husband called me from ICU the evening after our surgery was something that really stuck in my mind. My mother had gone to see him and came up nearly in tears because of the difference in him. The first thing she said was that he had color, and then he had grip strength. Many tears of joy have fallen since then. I really hope that it is something that you are able to experience. Good Luck!

[firenze11]

Firenze-

Thanks for reminding me about stem cell transplant and the link - I had totally forgotten about that method...

I'm sitting here waiting for my interview call, reading stories and experiences that everyone has written and tearing up (which I do quite easily...)

In Ontario, the "age limit" for donation is 50. Guess who'll be 50 next month? If I am fortunate enough, and a match, it will really be a cool birthday present - quite the way to celebrate the half century mark.

No problem! It sounds like a pretty "easy" way to donate, compared to a procedure that often includes general anesthesia. Hopefully if you're a match it will be a preferred method. I hope your interview went/goes well!

My Mom was so disappointed when she found out the age limit was 50 in Ontario. She's only a couple years over that limit and it's older in the US. But it would be an incredible way to celebrate your birthday! Good luck with everything! Keep us updated if you want to

[spindizzy]

Well interview is done. Very similar questions to when you give blood. Travel, where and when, chronic medical conditions, sexual partners, drug use (illicit and otherwise)..the works!! I'm off to the next level. The bloodletting. Sometime next week, they just have to confirm the time.

If I am a match, when it is time to do the donation, I will need to give myself a Neupogen injection for 4 days before to stimulate bone marrow, which has me a little worried knowing what Possegirl had said about the drug not being approved for this particular use. I quickly looked at Clevland Clinic website and they still use it....

One step at a time.

I'll keep you posted