Recovery Post Bone Marrow Donation

[spindizzy]

It's been eons since I posted. Am a duathlete. Had surgery on one knee last year. Didn't want to complain. I have been training really hard over the winter and have really improved my run and cycle fitness. After testing today, my coach said my VO2 max was up to 50, my aerobic threshold had improved and I had a lot more "metabolically" when I had to stop.

I came home tired & hungry, ecstatic that all of my hard training over the winter is starting to pay off. Then I receive a call from the bone marrow registry. About 4 years ago, I had blood drawn and placed on the registry for possible unrelated bone marrow donation. I was told there may be potential for a match of my bone marrow. Now, there still is a long procedure to go, a 30 minute interview, more blood, testing etc. But I need to prepare myself that I may be a match.

Has any athlete out there had experience with this procedure? What was your recovery time? How soon were you able to run? Cycle? I am a nurse (pediatric), so I am familiar with the procedure. But I do not know anyone that has donated. The pain I can handle; its the HUGE conflict between my desire to compete (as I couldn't last year) and the higher moral obligation to potentially help another human being.
Any expereince out there that can help me guide my decision would be really helpful.

Thanks!

[Possegal]

good for you for registering and possibly matching! i've been in the registry since the late 90s and never once matched - i joke that there must not be many irish-swedes in need! but, i have a very good friend who has twice saved someone's life via bone marrow donation. i will shoot him an email and ask him. he is not really an 'athlete' per see, but was in the navy at the time and was very physically active, so he may be able to give some insight. he is always happy to talk about his experiences!

[maillotpois]

Also no personal experience with donation (though I've also been on the registry for eons), but I just wanted to say THANK YOU for being willing to donate.

As a coach for the Leukemia Society's Team in Training program, I have met many wonderful people over the years whose lives have been saved by bone marrow and stem cell transplants. THANK YOU.

As an athlete who's suffered her share of injury setbacks over the years (off 6 months because of pulmonary emboli in 2006, current recovering broken shoulder off 2 more months at least, etc.) I know how frustrating it is not to be able to train and compete at your best - and this opportunity to donate while you are on the road to a come back. So frustrating for you I can imagine!!! But you must know that your sacrifice is worth it when you actually have the chance to save someone's life by your actions. Wow!

I do hope the recovery time isn't bad (assuming you're selected). But regardless - THANK YOU!!!!

[Possegal]

My friend was in the hospital for the second donation within a day of his wife and first born child coming home from the hospital. Not the best of timing, but he didn't think twice. I emailed him and will post with a response, but I can promise you he will say "no question, you have to do it".

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small. Her family has mobilized though and have bone marrow registries all over PA and parts of the east coast. I know they have kept track of how many matches they were responsible for, but sadly so far no match for their daughter. Though she has been stable for years on a drug I was involved with some years back, and they are certainly grateful for that drug! But a match would be wonderful.

So I agree, as a formerly injured and still not 100% semi-athelete ;) I can appreciate your worries. But you may have a chance to save a life, and it doesn't get any better than that.

[spindizzy]

Possegirl & Maillotpois-

Thanks for your thoughtful responses. I know that if I'm a match, I will donate..timing just sucks big time!! Perhaps the process may take a little bit and can get a few early du's in, who knows? I don't think I could live with myself if I didn't. I'm sure my coach is going to be super impressed! Two steps forward....

[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.

[Trek420]

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small.

I'm here! I'm here! Jewish and in the donor pool. Guess I'm not a match you your friend or I'd know :o

Thank you for donating. :D

[maillotpois]

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

[Trek420]

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

But you'll be banned from the TdF ;) :p :rolleyes:

[Possegal]

I'm here! I'm here! Jewish and in the donor pool. Guess I'm not a match you your friend or I'd know :o

I guess not either, too bad! Kid is about 16 and has been on meds for at least 6 years I think. There is this subset of young kids with CML in the western PA area, all of Jewish decent, all of families with known concentration camp history. It is an odd epidemiological mystery that I do think is being investigated. Or so I have been told anyway.

I think this girl's family has been, naturally, trying very hard to do marrow registries through synagogues and such, to try and increase the potential pool for their daughter.

Here is a comment I found on their website:
has registered over 8,000 people...

at drives held in 12 states...

and 22 marrow donors have been found for other patients looking for a match.

I hope they find a match for their daughter soon, but I'm proud I was a part of a drug that has been keeping her healthy for years.

[maillotpois]

Out of curiosity, Possegal, what drug and what was your involvement? Do you do research or something?

[firenze11]

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

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. :eek:

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!

[Pedal Wench]

My friend was in the hospital for the second donation within a day of his wife and first born child coming home from the hospital. Not the best of timing, but he didn't think twice. I emailed him and will post with a response, but I can promise you he will say "no question, you have to do it".

One of my best friend's from childhood, her oldest daughter's best friend is a CML patient. She has yet to find a match. She is Jewish and there is a problem for this subset of the population, as so many were wiped out during the Holocaust. Her donor pool is very small. Her family has mobilized though and have bone marrow registries all over PA and parts of the east coast. I know they have kept track of how many matches they were responsible for, but sadly so far no match for their daughter. Though she has been stable for years on a drug I was involved with some years back, and they are certainly grateful for that drug! But a match would be wonderful.

So I agree, as a formerly injured and still not 100% semi-athelete ;) I can appreciate your worries. But you may have a chance to save a life, and it doesn't get any better than that.

I am Jewish, of Eastern European descent. What can I do to help?

[Possegal]

hey pedal wench, you should seek out a way to donate a little blood to sign up for the registry. you can probably find some info that will direct you to the right place here. http://www.marrow.org/HELP/index.html
some registry events use cheek swabs but i think most do a blood draw, and doesn't take much blood for them to register you. and thanks for asking, the more folks registered, the better the chance for matches!

[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

[Possegal]

It should be said that many many many (add lots more manys) drugs are used off label. That in and of itself isn't so alarming. here is the link to some info about the FDA warning. If it were me, I would just be sure to take this with me and ask the people involved what they think about it. I'm sure they know about it and I'm sure they can adequately address it for you at the time and put your mind at ease.

http://www.medscape.com/viewarticle/568498

EDIT - ok, looks like that may not work as you may have to have a membership that I have due to work. how about this
http://www.fda.gov/medwatch/safety/2007/Sep_PI/Neupogen_PI.pdf

and here was the paragraph leading up to the revision in the label.

FDA Warns Against Off-Label Use of Filgrastim Injection (Neupogen)

On September 5, 2007, the FDA approved safety labeling revisions for filgrastim injection (Neupogen; Amgen, Inc) to warn against its use for peripheral blood progenitor cell mobilization in healthy donors.

Use of filgrastim for this unapproved indication has resulted in alveolar hemorrhage manifesting as pulmonary infiltrates and hemoptysis requiring hospitalization, the FDA said, noting that hemoptysis resolved with discontinuation of therapy.

Filgrastim is a granulocyte colony-stimulating factor indicated for use in patients with cancer receiving myelosuppressive chemotherapy or bone marrow transplant, patients with acute myeloid leukemia receiving induction or consolidation chemotherapy, patients with cancer undergoing peripheral blood progenitor cell collection and therapy, and patients with severe chronic neutropenia.

Again, that may sound worse than it is and I am not for a second saying don't do this. Just that were this me, this is something I would talk to the Drs about first and get all the information that I can. They will know much more than I can find out by searching online. :) Naturally.

[spindizzy]

You're a sweetie! :) Thanks.

[KnottedYet]

Spindizzy - thank you so much for doing this. I'm one of those folks barred from donating anything, blood, bonemarrow, *anything* because of a history of cancer (long gone and "cured", but mine is on the bad list and I'm disqualified)

If you miss your race season because of donating I will send you my 2006 Danskin Triathlon finisher's medal, because what you might get to do is much more important and deserves a medal.

[maillotpois]

Hey - that's a great idea! I've got a few great medals for you as well - some of my TNT ones would seem particularly appropriate.

[spindizzy]

Knotted and Maillotpois-

I am surrounded by generosity and sweetness!

I have decided to stop fretting, take it one step at a time. I am only thinking positive thoughts, and if I get to donate, I will work around it. I believe in developing mental toughness and this may present itself as an opportunity to do that. I plan on getting in a few road races in early spring and then 4 or 5 dus to compete in over the summer. If they have to be later summer, so be it.

I am also telling everyone I know that I was called; perhaps it will get others to consider having their blood drawn and getting their name on the registry. You cannot believe how many people didn't know how simple it was.

Knotted, everyone so inclined helps in ways that they can or that are meaningful to them. The spirit of generosity demonstrated by yourself and Maillotpois is overwhelming. Thank-you for keeping me in your thoughts

Now if you'll just say a small prayer for me as I go downstairs to do some power intervals on my bike, with my new seat, I would be doubly grateful!

[maillotpois]

I am also telling everyone I know that I was called; perhaps it will get others to consider having their blood drawn and getting their name on the registry. You cannot believe how many people didn't know how simple it was.


That's the best thing you could possibly do, regardless of whether you are "chosen to serve".

[spindizzy]

So they just took a mere 10 vials of blood about 120 cc ( I guess that is almost 1/2 cup). I have lots.

Anyway, now I just wait I guess. Kinda' weird in a way.

Looking to run a 5k on Good Friday or an 8k early April. Or maybe both.

[maillotpois]

well, good luck!

[Possegal]

Good luck and do keep us updated. It is a great thing you are doing. :)

[KnottedYet]

Good luck to you, and to the folks out there looking for a match!

[bouncybouncy]

This thread is incredibly inspiring!!! Thank you all...and Spin: Good Luck and strength!!!

[iowagrad]

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

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.

[Possegal]

OK, this is better late than never, but I managed to talk to my friend today and he apologized for not having responded to my email about how it was for him when he donated. He then sent me this reply.

My donation was from my hip bones and it was under general anesthesia. I was sore for about 3 days, but they give you percocet for the pain. After that it was off to the races. Best part the food at the hospital that I had after the donation! Steak and Lobster and nice desert and a glass of wine! Yes, in a hospital. The staff was great and the procedure was a piece of cake. In fact I did it twice and have been a match for a third, but they found someone else after they discovered that I had already donated twice. Life is the greatest gift there is and giving bone marrow to help someone else live longer or have a shot at achieving their dreams is a wonderful feeling. Maybe this will sum it up. I wrote it!

PLASTIC COOLER: $22
HELICOPTER RIDE: $14,000
DELIVERING THE GIFT OF LIFE: PRICELESS!!!!!!!

THERE ARE SOME THINGS MONEY CAN'T BUY. FOR EVERYTHING ELSE WE JUST HAVE EACH OTHER. DONATE BONE MARROW TODAY! THE LIFE YOU SAVE MATTERS.

hope this helps

[maillotpois]

That's very cool. Thanks for following up with him, Posse.

[cyclinnewbie]

Hi guys....just found this thread, and have been reading it today, and just want to say that, as an Oncology nurse who has held the hand of many patients who lay dying because they could not find a match, my heart is so touched by all of you. Thank you to everyone who has donated, researched, supported those with cancer and those caring for them, tried to donate, wants to donate, or even thought of donating. THANK YOU!

[spindizzy]

Posse girl-

Thanks for sharing the info. I can't believe your friend has been a match twice, potentially 3 times. I was speaking to a colleague here (works in Immunology) and she thinks chances are incredibly slim that I would be a match.

I've planned my summer season and we'll let the cards fall where they may.

Mastercard/Cancer Society is missing out on an amazing marketer.....

MMMM ......steak, lobster AND wine...want to go to that hospital!! How civilized!