<p>I’ve been registered for many years and made it “close” a couple of times, but according to the lady at “beADonor.org” who called me today I’m very likely to be chosen to donate this time. </p>
<p>She told me I’d likely have 2 options (the patient’s doctor may have an opinion on the preferred one for the patient - in which case I would follow that). Here is my understanding of the choices based on one 15 min conversation with the lady. </p>
<p>The first option is 5 shots in 5 days that spur the creation of blood-forming cells (which is why they want the marrow). Then it’s extracted with a needle at a blood center. She said the shots make some people feel “like they’ve been run over with a truck”.</p>
<p>Second option is the traditional “knock you out and collect marrow from your hip”. This downside is general anesthesia risk and soreness.</p>
<p>What a choice, right? If I match I’ll do it. But I am a little scared. Would love to hear from others who have done it.</p>
<p>I’ve never done it – but kudos to you. You’ll be saving someone’s life. Not too shabby an accomplishment. Put it in your Christmas letter and brag!</p>
<p>I’ve had leukemia for eleven years and a number of my fellow travelers have had bone marrow transplants. On some of the listserves I’m on, marrow donors come and ask questions and share experiences. </p>
<p>Generally speaking, folks who have donated found the procrit/neupogen (cell growth shots) and harvest to be easier than the marrow through the hipbone. Having had a number of bone marrow biopsies, I can say they are not a fun time, though my doc gives me Ativan so I don’t care. As a donor, though, they’ll knock you out, but you’ll be pretty sore afterwards. Depending on the patient’s diagnosis and final testing pre-transplant, the doctor may decide to change the method of stem cell extraction. It happens, but not often.</p>
<p>Folks who undergo a bone marrow transplant these days are down to their last option, since there are now many more drugs out there that offer lower risk and better success rates.</p>
<p>Thank you for being tested and for considering going through the process. This is a life-saving mission.</p>
<p>CountingDown, Thanks for the helpful info. I THINK the “counselor” who called me said that the doctor would likely prefer I take the shots. But SHE was a donor and had opted for the hip “method”. She kind of caught me off-guard and she was blasting me with information. I was just trying to keep up :-). I go give some more blood tomorrow and they’ll ship it off for the final ok. She said they know I’m a match but they have to make sure I haven’t developed any undesirable “issues” since the last time they analyzed my blood.</p>
<p>AllThisIsNew: yes, I was a bone marrow donor for my sister in 1996. Harvesting techniques have changed a lot since then but I would be happy to answer your questions. Send me a PM.</p>
<p>AllThisIsNew,
I was a donor-- probably about 12-14 years ago now. Mine was a knock you out and take it from your hip. I don’t think there was another choice back then.
I had (and have had in other instances) difficult with the anesthesia (pretty sick to my stomach after I woke up), but I think that’s me. Yes, I was sore for a few days. Not a big deal, given how critical this is for the recipient. If they called me again, I would do it again in a heartbeat.</p>
<p>I have never donated marrow but work in the field.</p>
<p>G-CSF or granulocyte colony stimulating growth factor is what the shots are. This medication, as you said, stimulates the bone marrow to make extra cells. The cells are removed by apheresis which is where a needle is placed in each arm, blood is removed through one, the stem cells are removed and the rest is put back into you through the other needle. Most people do experience bone pain while on the shots but it will subside after a day or so after stopping the shots.</p>
<p>Most bone marrow transfusions are done this way now because there is lower graft failures with peripheral blood stem cells (PBSC) versus marrow but there is a higher incidence of chronic graft versus host disease. Survival at 2 years is higher with PBSCs vs marrow.</p>
<p>It’s a wonderful thing to do for someone else so a big thank you for helping this anonymous person who is in desperate need of new cells.</p>
<p>A dear friend of DH is now being infused with his second round of stem cells after he relapsed with leukemia after a bone marrow transplant. The same donor agreed to donate more cells when she heard. I don’t know what his ultimate outcome will be, but I can say for sure, he would not make it through the month had this wonderful person not agreed to donate her cells for a second time. His wife sobs with gratitude every time she speaks of it. </p>
<p>The “spinal tap” method is far more invasive and, if given the choice, I would not choose it! Quite often, the doctor will specify which they would prefer, based on your gender/age/blood/weight etc.</p>
<p>Thank you so much for being a donor. My mother received a transplant from an unrelated and anonymous donor and I think it is one of the most noble things you can do. I hope every day that the registry will call me and tell me I’m a match so I can do my part.</p>
<p>Thanks for the PM. My experience was similar to snuggy’s - marrow drawn from the hip bone & difficulty recovering from the anesthesia (that’s also unique to me), and soreness for a few days afterward. But I would do it again in a heartbeat. I am on the national Registry and was contacted once about a possible donation, but it was not a good match to the potential recipient. </p>
<p>But I feel that my donation pales by comparison to the courage necessary for those who actually confront this disease. They are the real heroes. (Are you reading, CountingDown? ) Following the BMT, my sister’s leukemia (CML) went into remission but returned 5 years later. At that time, I was asked to donate white cells by apheresis several times for a procedure known as DLI (donor lymphocyte infusions). Fortunately she qualified for Phase 2 clinical trials of a new drug, STI-571, which proved highly effective in treating CML & was approved by the FDA in record time under the brand name Gleevec.</p>
<p>I am so proud of my sister for being a medical pioneer. She was the 10th patient at JHU to undergo a certain treatment protocol and was also a pioneer in drug development. And the best news is that 17 years after being diagnosed & undergoing a BMT, she is alive and leading an active, healthy life. While the BMT & multiple DLIs were not successful, they helped to buy her time until modern medicine could be developed.</p>
<p>I haven’t been a bone marrow donor nor has my DH, but we are both registered if needed. DH “almost” matched 3 times and we would do it if asked. </p>
<p>I just wanted to chime in and say thank you to everyone who does this.</p>
<p>I can not offer much but having known two people with leukemia, I want to say thank you for what you are doing. I hope more continue to sign up for the bone marrow registry.</p>
<p>The graduation speaker at my son’s 2009 college graduation was the college’s much loved former president and marine biologist, Steve Katona. Shortly after retiring from the college just 3 years ealier, he was diagnosed with leukemia and received a bone marrow transplant. His speech starts out with a description of the process from his, the recipient’s experience. Whenever I hear about the work he is still doing I think about his speech and about his donor.</p>
<p>Here is a link to the speech. His talk begins at about 6:00.</p>
<p>I have only had general anesthesia once and I was quite nauseous afterwards. The shots do sound better to me. The literature even says they’ll come to ME after the first one if I like. I’m not a fan of shots, but I really hate vomiting.</p>
<p>And 12rmh18 is totally right! The people fighting these diseases are the heroes. By comparison a few pokes with a sharp object isn’t a big deal at all.</p>
<p>Thanks for all the input - zip100, I will definitely listen to that speech tonight.</p>
<p>I applaud those who are willing to be donors, unfortunately since I am not even allowed to give blood, I don’t know if I would be allowed to donate organs.</p>
<p>I agree, local is much better than general anesthesia.</p>
<p>My husband donated bone marrow over 25 years ago. He was in his early 20’s (and quite invinsible).
Back then there was only one option - he was put under and it was harvested from his hip. He has a high pain tolerance so he expected to not need much in the way of pain meds. Boy was he wrong!!! Lots of pain. In a few days he felt much better but he was very surprised at how much pain he felt in the 24 hours after surgery. </p>
<p>The first option you mentioned seemed much less invasive than the 2nd option (which was my husband’s experience). If the DR. okays that option, I’d go with it. It will still be painful, I’m sure, but hopefully, less so. </p>
<p>You are giving an amazing gift to this person. Hope. What a priceless gift.</p>
<p>If you are known to have a rough time with general anesthesia, I’d ask about having an I’VE anti nausea med given. That worked very well for me when I’ve needed general. </p>
<p>I signed up to be a bone marrow donor but they’ve taken me off the registry due to my personal chronic health problems since registering. </p>
<p>I applaud the wonderful donors who help folks have a chance for improved life.</p>
<p>Another kudos to all those signed up to be donors, and just another reminder that you are potentially SAVING A LIFE!!! It’s already been said on this thread, but I just wanted to reiterate that the only people who are being considered for an allo transplant (from another person) are TRULY DESPERATE and have no other options.</p>
<p>In terms of the two kinds - I agree with what’s been said before - the shots will likely be significantly easier than harvesting from bone. Harvesting bone marrow from the hip is a pretty brutal procedure, which is why they put people out completely. </p>
<p>But even if you have to go that route, it’s temporary and totally worth it in my opinion. I’ve been called twice but not been a perfect match. </p>
<p>Best of luck to you and to the potential recipient on this journey!</p>
As a donor, though, they’ll knock you out, but you’ll be pretty sore afterwards. Depending on the patient’s diagnosis and final testing pre-transplant, the doctor may decide to change the method of stem cell extraction. It happens, but not often.</p>
) Following the BMT, my sister’s leukemia (CML) went into remission but returned 5 years later. At that time, I was asked to donate white cells by apheresis several times for a procedure known as DLI (donor lymphocyte infusions). Fortunately she qualified for Phase 2 clinical trials of a new drug, STI-571, which proved highly effective in treating CML & was approved by the FDA in record time under the brand name Gleevec.</p>