Donating Bone Marrow

“I received a plea to help a woman in need of Bone Marrow donations. I was surprised to learn that this is really only a bit more demanding on the donor than a blood donation. I can't give blood or marrow because of having had cancer within 5 years, but thought I'd share this info with you - as a way of doing something.

Check out: http://www.marrow.org/ for general info.

This is the website for the specific woman I was contacted on behalf of:

http://www.lucyslovebus.org/
http://www.lucyslovebus.org/marrowme.pdf
last edited: 1/30/06 5:27:41 PM”

“i was always under the impression it hurt like hell”

“I gather it hurts, but its not like giving a kidney or a liver.”

“Yes, please sign up. I might need one in the future if my HL ever came back.

Thanks. ;)

Getting your bone marrow tested for Cancer was not pleasant.

On a related note - getting your bone marrow transplanted must suck more than anything. I have my chemo in the Transplant Floor. Those people have there bone marrow wiped out before transplant can be done.

Thats chemo like nothing anyone else experiences and then they sit in there for about 6 months.

Hope to God I never need it.”

“i had a false positive for hep, so can no longer donate plasma, does that go for all blood related products?”

“For the bone marrow donor you can expect some localized back pain for a couple of days where the needle was inserted into the hipbone to draw the marrow out. You will not feel anything while it is being drawn because you will be anesthetized. They usually draw 1 liter for an adult, but much less if you are donating for a child. My brother donated for me and I received 2 liters which was more than normal, but I needed a lot. You have about 10 liters of marrow in your body. He said he felt a "rubbery feeling" in his feet after donating and it cleared up after a week. He also got sick from the anesthesia, but that's just him. Not everyone will get sick from it.

People who stay in the bone marrow unit for 6 months are probably the patients that have serious complications. Transplant outcomes are improving, but it's a risky procedure anyway you look at it. Some will go home and then go back with problems, but it's looked at as maintenance sometimes and comes with the territory of transplants. You can go home in as little as 1 month if everything goes right. Yes, having to get a transplant sucks, but thankfully they have the medical advances to cure bone marrow failure diseases and another thanks to all the people that care enough to donate bone marrow to save lives.
last edited: 1/30/06 8:28:47 PM”

“What a great thread. Thanks for posting this pedxing.


-I work in the Transfusion Medicine dept (aka Blood Bank) at a Boston Cancer/Trauma hospital.”

“I've done it twice now. First time with throught the back or really hip bone. That patient didn't make it got stick before the bone marrow could graft. My second time was more like donating blood. I got a injection for 5 days straight increasing the amount of stem cell in my blood. They then hooked me up to a machine took out my blood skimed off the stem cells and returned my blood and plasma in my other arm. This guy survied and it has been almost 2 years since I donated. We now keep in regular email contant and every so often phone calls. He's back to playing golf and running around with his grand kids.

I was crushed when I heard the first guy didn't make it and thought I would never donate again. Well when called upon I couldn't say no as I knew someone was really depending on me for there last chance at enjoying life.

It truely is a great thing to do as there is no reward at all other than knowing you could be saving someones life. I remember the first time I talked to John he asked me if there was anything I wanted. I simply said the fact your alive is all I'll ever need.”

“Also when you do a bone marrow transplant. The person takes on your immune system. What your alergic to he is. Your blood time is now his blood type.

So since I never got sick and I'm not alergic to anything he picked up the same traits.”

“Hats off to you flasher. It's an amazing thing to do.”

“Ped. Thanks
I can't believe I've done it twice. When I signed up for the program here in Iowa they said its like 1 in a million you'll ever have to go through with it. Well 2 times now I guess I must have popular marrow.

To me it doesn't matter how many times I do it I'd do again tomorrow.”

“flasher - Hats off to you!! You are an inspiration.”

“Flasher, that's great that you donated not once, but twice. I know some patients are excited to meet their donors from what I've read on our egroups.

I've heard of the allergy transfer happening, but I'm glad I didn't get my brother's hay fever or asthma. You get the donor's DNA in your bone marrow too.”

“Flasher - that is awesome that you are able to donate. My sister may ultimately end up needing a transplant if her current program doesn't work. She is insisting she can not put anyone through the procedure.

When she had her marrow drawn for testing they didn't have the appropriate anesthesia and she felt all of it; pretty awful stuff so this would be a absolute last resort for her.”

“Good for you Flasher!

Sandyann, it's more likely that the procedure for your sisters test was different than what marrow donors go through. Another possibilty is that your sister, being sick, had(s) poorly differentiated marrow. Causing more/painfull biopsies to get enough marrow to analyze.”

“Donating bone marrow requires surgery with anesthesia. It is not anything like donating blood.”

“Most people get "conscious" sedation type anesthesia, not gassed. :D If done well, the procedure leaves some soreness. The "surgery" is taking a core of bone marrow with a large core needle, and sucking out the bone marrow particles. The sucking is worse than the core, I warn the patient of that if they have local anesthesia only. Lasts only a few seconds, each time you "pull".

The stem cells needed come from the marrow or can come from blood. Somebody mentioned getting meds then blood taken. That is one way. The meds increase the number of stems cells in your blood and pheresis concentrates them.

National Marrow Donor Program

ABC's of Blood Cell Donation”

“I've read this and the cancer thread. You guys have inspired me so much that I started the mental debate about giving. It didn't last long and I decided to do it. Unfortunately there is a cutoff at age 61 and I will be there in exactly one month. I really doubt that I could get through the red tape prior to my b'day, but I'll check. I wonder why 61? It seems such an arbitrary, pull-it-out-of-the-hat figure.”

“Donating marrow is not surgery. They just insert an larger needle into the hipbone and draw out the marrow. There is no cutting involved. They have to use anesthesia because of the time it takes to draw a liter or two of marrow. It's not possible to numb inside of the bone from the outside using topical agents. That is why a marrow draw is painful without a Demoral drip or something similar during a biopsy by someone not experienced with drawing marrow.

Some doctors just use a topical agent to numb without anything else because they are so good at drawing marrow for a biopsy that they can do it with minimal pain. On the other hand some doctors aren't used to doing it and can cause great pain during a biopsy.

For a patient having a transplant the marrow is just dripped into the body from an IV line over a few hours. It is not a surgical procedure and doesn't hurt during the marrow infusion. The marrow finds it's way into the bones and hopefully begins to grow in the empty space left by total body irradiation and high dose chemo that killed the diseased marrow and left room there for the new marrow to grow. It's really an amazing process. New drugs are now eliminating total body irradiation for some cases.”

“I've been on the marrow registry for about 15 years.
I got called about 6 years ago, but further testing proved we didn't match. The good thing is that now I'm fully tested and the next call will be for real.”

“Crazy. Yesterday I worked on patient's parents at University of Michigan's Motts Childerens Hospital. I worked on a man who's daughter had been at the hospital for 6 months with soft tissue cancer, having been in remission for 4 years from bone marrow cancer. She's twenty now. Her name is Laura. Her parents can't leave her side because she's tired of fighting (she had all kinds of complications with T cells and bacteria). In talking with him I decided I'm going to sign up to be a donor. I don't even have to go looking for the website now. Thanks guys!
It's comforting to hear what exactly is involved.”

“$45 to $95 "donate"?”

“Dude, you'd spend that easy in one day out. Think how much it'd add up to if every person who could potentially be a donor didn't cover their own tissue testing cost initially.”

“And it is tax deductable.”

“Doesn't cost a thing to donate. Well in Iowa it doesn't.
The drug you take in increase stem cells is call Filgrastm (sp) You take a shot for 5 days in a row. The side affects is you feel like you have a mild case of the flu all achy and stuff. Also in increases the size of your pancreas and you run the risk of it actually exploding.

Also normal bone marrow donation is surgery as its not just a needle. They make two 1/4" cuts into your back. And through each cut they will punchure into your hip bone in up to 50 different spots. All in told you can wind up with 100 holes in your hip bone. I had to have a epidural as I can't take local anesthetiza and be put to sleep. The pain in my back hip lasted for 2 months with the first week being very painful.


“I've been on the marrow registry for about 15 years.
I got called about 6 years ago, but further testing proved we didn't match. The good thing is that now I'm fully tested and the next call will be for real.”

twigeater

Nope not true everytime you could be a possible match you have to be re-tested each time. The record of your previous test means nothing to a would be new patient. Each donor and patient have different make and the cells have to be tested directly to see how they interact.
last edited: 1/31/06 8:39:14 AM”

“Some doctors just use a topical agent to numb without anything else because they are so good at drawing marrow for a biopsy that they can do it with minimal pain. :-D

Never done it for transplant, only diagnosis. Never been on the sharp end of the procedure.”

“oh sure I know I'll have to be tested if I get called.

The way I understood it was the initial test to get on the registry tests a certain number of "points" (I'll call them points cause I don't know the right term)...when I got called, something about those points matched, but tests for futhur points proved I wasn't a match.
What I meant was now when my points are compared, there are more points to check against initially, so if I get called now, if it's not the "real thing" then darn close.”

“Some doctors just use a topical agent to numb without anything else because they are so good at drawing marrow for a biopsy that they can do it with minimal pain. :-D

Never done it for transplant, only diagnosis. Never been on the sharp end of the procedure.”
Pathman

I've never heard of any doctor being able to puncture into your hip bone with out it hurting.
Also there is a huge risk for the patient as the new marrow can view the new body as un-normal. The new marrow (also your defense system) will attack the host because it is viewed as foreign killing them in the process.”

“Didn't say no pain, minimal pain. Key is numbing the periosteum, the covering over the bone with lots of nerves. As mentioned, can't numb inside the bone where the marrow is, that is where most of the discomfort comes from. Always ask the patient how they are doing, take it slow and easy. I don't do them any more and don't mind not doing them. Doing it with minimal pain takes time and patience.”

“They just drugged the hell out of me to the point I didn't know what was going on. I had them do it under my requests and I really didn't want to be awake during the whole thing. And since I couldn't be put to sleep it was my only option.”

“Th eproblem with my sister's test is the normal anesthesia was not available and she needed the test asap. So, they gave her a sedative to calm her nerves and took two samples from her hip. The problem was she felt the very painful pressure of the needle as it finally punched through the boen into her marrow. And then of course the harvesting of the marrow was just as bad or worse.

I know that was graphic but really the point I am trying to make is that most people wouldn't feel that enough to be afraid for family members to even test for matching. She is 46 now and her doctor is telling her she is past the optimum age for transplant ans do is trying Gleevic. We have ours hopes and prayers on Gleevic.”

“It seems like there are groups in most areas that cover the cost of the compatability testing. That seems like a great fund raising cause.

Hats off to Twiggy for joining the registry as well. It stunned me to read that people are dying for lack of a bone marrow donor. Yes, it's a bigger deal than blood transplantation - but when you think that you have a good shot at savind a life, it ain't much.

I've heard of people joining registry's to be live organ donors (kidney, liver, etc.) for people in need. I'm not ready to that to help total strangers, but this is something I want to do if I can get health clearance.”

“SandyAnn - Here's hoping Gleevic is a big help. Blessings to you and your sister.”

“The drug you take in increase stem cells is call Filgrastm (sp) You take a shot for 5 days in a row. The side affects is you feel like you have a mild case of the flu all achy and stuff. Also in increases the size of your pancreas and you run the risk of it actually exploding.
flasher
9:36:40 AM
1/31/06

I Inject that two days after chemo, for 5 days b/c chemo is doing a number on my Neutrophils. It's a Granulocyte Colony Stimulating Factor (G-CSF).

There is a very rare chance that your spleen could burst.

I've taken it 3-4 times now, 15-20 injections. Spleen Okee Dokee so far.

;)”

“It appears that there are two types of bone marrow harvests. Peripheral blood stem cell harvest (PBSH) like Flasher described and a standard marrow harvest through the hipbone. I'm assuming that anyone who signs up for the donor program can be called to donate using either procedure depending on what the patient needs.”

“SandyAnn, maybe your sister should get a second opinion. The upper age limit for transplant is between 40 and 55, but the health of the patient matters most.

There was a patient next to me having a transplant for CML leukemia and he was 51 years old.”

“It appears that there are two types of bone marrow harvests. Peripheral blood stem cell harvest (PBSH) like Flasher described and a standard marrow harvest through the hipbone. I'm assuming that anyone who signs up for the donor program can be called to donate using either procedure depending on what the patient needs.”
RichB


Correct Rich. All based on patient needs. If a patient needs alot of marrow then you go into the hip bone. If they need less you do PBSH”

“I'm on the National Bone Marrow Registry-- It's harder for Minorities, especially Asians, to find Marrow matches due to certain cultural and religious superstitions....

I've never been called upon to donate, but to get tested, they just take a little blood....One of my sister's friends had Leukemia, and unfortunately, did not make it before they found a match who was willing to donate...(They found one match, but they were scared off by publicity--the match was in Singapore.)

Thinkbubelz' uncle just got a Kidney Transplant from his (Thinkbubelz') cousin last Wednesday. We saw him on Thursday, he looked pretty well. I understand his cousin (the donor) has more pain because of the remaining negative space created by taking the kidney away. She has 5 kids, so I think this will probably be pretty challenging for her for a while!”

“How much discomfort is involved with the initial testing to see if you're a potential match?

edit: Never mind. They only take a little blood?
last edited: 1/31/06 4:29:54 PM”

“I actually found the "discomfort" of the Bone Marrow Biopsy.......interesting. Especially after he took a chunk of bone.”

“Here's one family that desperately needs matching bone marrow for their son. Despite holding bone marrow drives they still haven't found a match for him.
last edited: 1/31/06 6:45:42 PM”

“I hope they get a donor for their son. I see that I can never register. I was hoping it would be like blood donation - 5 years cancer free and you can donate.

http://www.marrow.org/HELP/med_guidelines_join.html”

“If a TT'er wants to register and needs the fee, I'll write the check. Just give me your word that you'll donate if you get the chance.”