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Did anyone here donate bone marrow or stem cells?
Posted by: space-time
Date: June 21, 2010 11:10AM
I learned that the 8-month old niece of a friend (which I have not seen in a very long time) has a rare and serious form of leukemia. I volunteered to be tested to see if I am a possible donor. I never met the little girl, and I barely know her Mom, but I would be more than glad to help them, if I am a match.

Also I would like to know how successful are these procedures, what is the chance the the baby will survive?

There are 2 possible options according to the message I received from them, and I wonder what the risk is for the donor associated with each procedure. It’s not that I am afraid of one or the other, but if there are significant risk associated with one procedure and the other is much safer for the donor, then that would also help me make a decision.

thanks a lot.

Quote

Here are a few important aspects of this process that potential donors usually have questions about:
- the actual donation can happen in one of two ways:
o 1) actual bone marrow donation. Pros: best options for Raluca, short procedure for the donor (15 minutes or so). Cons: more invasive than the alternative (requires a small biopsy usually in the hip bone) and can be somewhat painful for the donor; anesthesia is obviously provided.
o 2) stem cell donation. Pros: minimally invasive (requires only access to peripheral veins, like during blood donation), little if any pain for donor. Cons: 2^nd best option for Raluca, more time consuming for the donor (they need to be hooked up to a machine which “collects” stem cells from their venous blood for a few hours), might involve a short treatment for a few days to stimulate the production of stem cells in the donors' blood.

Note that in both cases the actual “quantity” of specimen (bone marrow or peripheral blood) will be relatively small because Raluca is so young and won’t need the usual quantities for transplant. This is just FYI, since the collection procedures would not change significantly except likely taking shorter than usual.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: AlphaDog
Date: June 21, 2010 11:30AM
I don't have any firsthand experience, but a good friend's sister got a stem cell transplant to treat her leukemia. That was in February, and the procedure went well for both the donor and the recipient. She's currently cancer free, although it's been just a few months.

The PA I see for my rheumatoid arthritis is in the bone marrow registry and has donated more than once. She's still alive and well, so the risks must not be too big.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: dochocson
Date: June 21, 2010 02:23PM
I've been on the registry for about 20 years, haven't been called yet.

The risks to the donor are really quite minimal. Bone marrow aspiration (option 1 in your scenario) can be painful, though they do use local anesthetic to reduce the pain. It is a large bore needle that has to puncture the bone to get to the marrow. They may use conscious sedation, I have not seen them use general anesthesia for this.

I would personally opt for the bone marrow donation, why not give her the best possible chance?

One last thing, do NOT register as a donor unless you intend to go through with it.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: lemmingboy
Date: June 21, 2010 02:44PM
I've been on the marrow donation registry for years and have never been called.

From what I understand, for actual marrow donation, the biggest risk comes more from the anesthesia than the actual procedure. Also when they say there is pain for the donor, I've been told it's more along the lines of the soreness you'll feel if you workout way past your limits and not very bad at all.

In terms of the second method, it's just like giving blood except you stay hooked up for a few hours instead of a few minutes. There is almost no risk and I think the treatment they talk about afterwards is a simple round of drugs to protect you for the slightly weakened immune response you'll have for a few days.

If they can find a match, which is the hard part, and marrow is actually donated, the odds of success are very high for a full recovery.

I got put on the registry for a similar reason to you -- a friend of a friend needed a transplant and no match could be found. With nothing left to lose, they asked everyone they knew to get tested, for the one in a million chance a match could be found. Sadly, I believe the young lady never found a match and ended up passing away.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: space-time
Date: June 21, 2010 03:03PM
Thanks, I am 100% decided to donate if I am a match, whatever works best for her, and if the bone marrow procedure is not that bad and I can get away with local anesthesia, then I will probably chose that option. if only the little girl could find a match.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: volcs0
Date: June 21, 2010 05:07PM
The cure rates for AML in first remission after matched unrelated transplant are decent. Not great but decent. For kids, we transplant AML in first remission if they have a fully matched sibling donor. There are indications for transplant in first remission with an unrelated donor as well, but many kids without a matched sib just get full chemo - an would only go to transplant at relapse.

For ALL, transplants are usually only done in second remission (i.e. after standard therapy fails), and at this point, transplant is not as successful. Of course, overall, ALL is more curable than AML, it is just that by the time a kid with ALL gets to transplant, they are usually pre-treated quite heavily.

Most kids who die after transplant, still do so from relapsed disease, but the side-effects of the transplant can also be devastating - graft-versus-host disease being the biggest long-term issue.
But overall, I've seen transplants cure a lot of children over the years.

Bone marrow harvests are becoming less and less common. All the harvests I've done have been under full general anesthesia. Depending on the size of the donor and the patient, we will do up to 100 pulls from each side. The side effects are a drop in hemoglobin (can be substantial, but not usually requiring a transfusion) and pain (which can also be substantial). There is also a risk on infection at the sites(s) but this is pretty uncommon.

More and more, people are getting stem cells harvested after being mobilized with G-CSF of GM-CSF. This is standard pheresis, much like donating platelets. There are supposedly few side effects of the growth factors, other than some bone pain. Of course, long-term side-effects are as yet to be determined.

I've been on the registry for 20 years as well, but given my "standard' ethnicity (Eastern-European Jewish ancestry), I'm not likely to be called up.

Hope this helps.
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Re: Did anyone here donate bone marrow or stem cells?
Posted by: M>B>
Date: June 22, 2010 01:03AM
I have arranged to donate all my body parts for recycling upon my death, and not a minute earlier. After all where I am going I will have no use for them, wherever that is?
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