<p>Calmom, you have articulated everything that I was thinking and feeling so well.</p>
<p>Calmom, I had no info either. But if you scroll down, below the ID number, you can use your social security number and your name and address to update and it’s enough. I got a confirmation e-mail and I assume if I wasn’t in the registry that they might let me know that.</p>
<p>Leukemia patient here. I took Neupogen when I was on a previous course of chemo, with no ill effects. (current WBC is 8.5-9.8) The worst part of Neupogen for me was injecting myself (as a donor, you would NOT have to do that). I was already on self-injected chemo, so the assumption was that I could handle giving myself the Neupogen shots, too. When you’re on some forms of chemo, your white counts drop. You need your white count to be high enough to fight infections and to stay on the chemo. Faced with these choices, you just do it.</p>
<p>If you are donating marrow/stem cells/peripheral blood cells, you are going to be asked to sign a ton of paperwork, whether or not it’s a research study. They have to disclose any and all possible side effects of your donation. Blame it on the lawyers.</p>
<p>Umbilical cord blood does not generally have enough stem cells for an adult BMT, though they have had good success in using cord blood with pediatric BMTs. My guess from what the OP is saying is that the trial is trying to see if Neupogen increases the cell production so that donors don’t have to go through so much pheresis to extract enough cells for donation.</p>
<p>Someone who is a potential match means that this person matches 5 or 6 out of six alleles that are tested and recorded from the original donation. From that point, the donor is contacted and a more sensitive level of match is tested (up to 12 alleles). Generally the closest possible match or two are then contacted for a detailed health screening. There may be preferences as to CMV status, gender, lifestyle issues, etc. in picking the best donor candidate, assuming the patient has the luxury of more than one. I’ve worked at marrow drives and while they ask that you only do the cheek swab if you are truly willing to donate when called, you are not bound to do so.</p>
<p>Donors and patients will not be identified to each other for at least a year (if a donor is German, it’s two years, and some places will never reveal the link), and even then, only if both agree. Some of my CML buddies who have had BMTs send letters to their donors (and get replies), but the letters are vetted and redacted by (I believe) the NMDP and then passed on to the recipient.</p>
<p>A family friend of ours, age 35 and four kids eight and under, is in hospice after two BMTs have failed to cure his leukemia. We are all profoundly grateful to the two donors who gave our friend a chance at a cure, and given him almost two years with his children. I have other friends who have come out on the other side of a BMT leukemia-free, though some have significant health issues relating to the transplant. They are darned happy to be here. I’m on a BMT listserve, and sometimes folks pop in to say they’ve been contacted about being a donor. I can tell you the outpouring of thanks and concern for those donors is overwhelming. The donors are heroes to people who have no other options.</p>
<p>Er, sorry, there is NO way I’m giving out my social security no. </p>
<p>As I said, if I’m in the registry already, they’ll be able to find me. It’s very, very easy for anyone who knows my full name. </p>
<p>As I said, Shellz has won the argument. My present level of commitment apparently isn’t good enough. They don’t want middle-aged, post-menopausal grandmothers like me who might have health concerns or say “no” to a particular procedure under certain circumstances. The one thing I can say for certain is that if I received a phone call like the OP got… I would have a lot of questions. I just am the type of person who likes to gather information before making decisions, and does not respond well to pressure.</p>
<p>Won the argument? Wow. This is not a game, Calmom. If it were a game, however, the “winners” are those who get the match they need. The losers are those who die waiting. If I put you off by my bluntness, sorry. Not gonna sugar coat the facts here…it’s life and death.</p>
<p>Everyone has the right to NOT donate. (read that again, before claiming that I am bullying anyone into being on the registry) The way you exercise that right is by abstaining from the registry. No judgement as it is a personal decision. But, and it is a HUGE but, putting your name on the registry indicates your willingness to be the match if called upon. Saying no thanks at that point is just wrong, barring extreme circumstances, which do exist. In fact, the donor’s health is of primary concern to the process. You will be turned away if the procedure will cause harm to your health. </p>
<p>BTW, it’s not “my” cause. It’s the cause of every family searching for one last hope for their loved ones.</p>
<p>VeryHappy…the good news is you may still be able to donate blood/platelets! Each blood donation can save up to three lives. Blood transfusion/Platelets are so important to critically ill patients, including BMT patients. </p>
<p>Don’t despair, there is a way for every willing heart to make a difference. How wonderful that you would have wanted to be the one to save a life. You are my hero.</p>
<p>Shellz; your attitude turns me off to your cause, too. Please, do the BMT organization a favor, and stay busy in a part that does not involve recruiting donors!!!</p>
<p>Um, I think the original question was how should OP decide. Obviously, any of us on the registry cared enough to sign up. The very real issue here is: what are the risks associated with the newer peripheral procedure and the use of neupogen?</p>
<p>I’ve been on the registry about 10 years. I have been totally committed to the idea I could help someone. But, I just did a fast google of this and other than what’s quoted by Busyparent, there isn’t as much detail about risk as you can find for, gosh, an incontinence medication in an ad in a magazine. Not from Mayo, not from FDA, etc.</p>
<p>Most reports are regarding the patient. Rather than argue about what Calmom or I or others “comitted to” when we signed up, perhaps shellz can find some of the info we need.</p>
<p>What are the percentage risks of long or short term life jeopardizing or quality of life jeopardizing damange to a healthy donor? I am not worried about hip pain or nosebleeds- but why do I see remarks about fatal spleen damage?</p>
<p>I can see why OP, a mom, is concerned. My best to you, as you decide.</p>
<p>Btw, I get a glossy magazine-type publication maybe every other year from the marrow folks and every so many years a postcard asking me to contact them if my address has changed.</p>
<p>Edit: my apologies for sounding so darned mad, but any concern a donor has should not turn into a “but you promised.” As we learn more facts, I am sure many will continue their desire to help.</p>
<p>See: [CLL</a> Topics Updates Neupogen & Neulasta: Risks and Rewards](<a href=“http://updates.clltopics.org/2749-neupogen-neulasta-risks-and-rewards]CLL”>http://updates.clltopics.org/2749-neupogen-neulasta-risks-and-rewards)</p>
<p>Found this from the Mayo site:</p>
<p>[Blood</a> and bone marrow donation: Risks - MayoClinic.com](<a href=“Blood and bone marrow stem cell donation - Mayo Clinic”>Blood and bone marrow stem cell donation - Mayo Clinic)</p>
<p>[Blood</a> and bone marrow donation: What you can expect - MayoClinic.com](<a href=“Blood and bone marrow stem cell donation - Mayo Clinic”>Blood and bone marrow stem cell donation - Mayo Clinic)</p>
<p>OP: I am late to the debate, but I am a bone marrow donor. I donated in 1996 for my sister, who has leukemia. It was not a stem cell transplant done via the apheresis process, but by the extraction of bone marrow from my pelvic bone. </p>
<p>Your original question concerned the safety of taking neupogen to stimulate cell production. This was not an issue for me 16 years ago, so I can’t answer to that. I would, however, ask the doctors if short-term (5-day) injections pose a health risk, or if that risk comes from longer-term usage. You are entitled to ask about potential health risks to yourself.</p>
<p>As for your philosophical question “what would you do?” I can answer unequivocally that I would do it again. To me, it was a no-brainer: I could donate or my sister would die. Given those two choices, why would I not choose to donate??</p>
<p>To those who said the process is painful, I can say that it was uncomfortable but not unbearable. Having my sister die would have been painful and unbearable.</p>
<p>My sister recovered from her BMT & was in remission for 4 years before her leukemia returned in 2000. At that point, I underwent two donor lymphocyte infusions (DLIs), where cells were extracted & blood was returned via the apheresis process. The first DLI took ~1 hour, the second required 3 hours. The DLIs were marginally successful, but my sister was able to participate in clinical trials for the drug Gleevek, which was quickly approved by the FDA & has been highly successful in treating various types of leukemia & other cancers. My sister is alive & leading an active life today.</p>
<p>I realize that being a bone marrow donor is a highly personal decision, and I applaud anyone who would consider it. For me, it boiled down to a very simple question: If you have the ability to save a life, why wouldn’t you? (Yes, I am on the National Registry & would donate again for a stranger.)</p>
<p>Feel free to PM me if you would like to discuss further.</p>
<p>
shellz, you’re missing a vital part of the equation - the psychology of it all.</p>
<p>When you put your name on the registry (and I put mine on, since there are very few Ashkenazi Jews available for donation since the Holocaust), it’s an abstract thing. Would I donate to save a life? Of course!</p>
<p>But once you’re called to make that decision, it’s no longer abstract. Now there are real issues and real risks involved. There are other real people to consider, both those in the donor’s family, the patient, and the patient’s family. Your feelings about something concrete can certainly be conflicted.</p>
<p>It’s no different than going into a marriage, or other “commitment.” How many people get married thinking, “I would NEVER cheat on this person,” and then end up doing so? How many people say, “If he/she cheats on me, I’m outta here,” and then have to face the reality of an affair when lives are already intertwined, children & property are involved, etc? Or the woman who says, “I’ll never stay if he hits me” and then finds herself abused after 15 years of marriage?</p>
<p>The abstract and the reality are rarely the same. The abstract is black & white: donate or not. The reality of people’s lives is much more messy.</p>
1 Like
<p>Chedva-
Good points. I certainly don’t discount the psychology of it all. Its very real, and as you say, messy. </p>
<p>anxiousmom-
I feel the same about people who are on the registry but yet aren’t fully committed.</p>
<p>I will bow out, as my postings, though based in fact and blunt language, are not appreciated.</p>
<p>Good luck to the OP and to all those out there who are lucky enough to be the match.</p>
<p>Interesting info about the registry. Thank you.
Are there similar organizations where you can register for organ donations after death - currently I have a notation on my drivers license to that effect, but don’t know if there’s anything else that needs to be done. Is there an organization that’s interested in using your body for research or med school after death?</p>
<p>Thanks Calmom and SV2. I don’t want to prolong my part of this discussion; I’ll do some research and if what I find is valid, will pass it along at some other point. </p>
<p>Last night, the study I found was of 350 people. Not much. Calmom’s link is to a CLL info and support site, primarily for patients; Mayo doesn’t seem to tackle my question.</p>
<p>It’s not alarming to find 30 % had various “enduarable” effects- bone pain, etc. I’m concerned about a bit more. I’ll just stop here.</p>
<p>
I agree to a certain extent. It is quite different when the abstraction suddenly becomes a reality. At the time, I was a mother of young children (ages 4-8). Yes, there were risks to me, but in a cost-benefit analysis, the risks to me were smaller than the risk to my sister of doing nothing. It is a highly individual decision.</p>
<p>This is the concept of “informed consent,” which also includes the right to change one’s mind when the abstract collides with reality. NIH & any other institution are bound by medical ethics & law to explain this in detail.</p>
<p>12rmh18.
Glad to hear your sister is doing well. I am also on Gleevec! :)</p>
<p>12rmh, it’s also very different when it is your sister as opposed to a stranger - and a person might feel different about the risks involved depending on the age of the patient and medical condition being treated. For some conditions, the transplant may be experimental or potentially life-prolonging rather than life-saving. </p>
<p>For example, the OP was told that the patient is a 47 year old man with multiple myeloma. According to information from the Mayo Clnic, a stem cell transplant will not cure the disease – rather, it has the potential of prolonging the patient’s life, but he will eventually relapse. See: [Multiple</a> Myeloma Treatment - Mayo Clinic](<a href=“http://www.mayoclinic.org/multiple-myeloma/treatment.html]Multiple”>http://www.mayoclinic.org/multiple-myeloma/treatment.html) </p>
<p>Now, of course, like your sister, in the interim there could be a new discovery of a drug or therapy that will save the patient’s life, so the extra years that the patient gains with the treatment could indeed be lifesaving. But that still is a factor to be weighed against whatever risks are involved to the donor. </p>
<p>Again… I simply think that the OP has the right to ask appropriate questions about both short and long-term risks to her, and make a decision that takes her own needs and that of her family into account. She is being asked to undergo a procedure and take medications that didn’t even exist at the time she signed up for the registry.</p>
<p>Of course it is a wonderful thing if she donates and yes, it may be a chance to help someone in need. But she shouldn’t be shamed into making a choice she is not comfortable with - it is only a “gift” if freely given.</p>
<p>I don’t know if this is true today, but when my husband donated bone marrow, he was told that he had the option to say yes OR no to the donation request. This was made very clear to him. There was no pressure to donate. And when he was asked to donate a second time, he was again given no pressure. </p>
<p>He decided to decline the second time as our life situation was different. The donor liaison who we interacted with did not pressure my husband in any way to change his decision. She was a bit annoyed that he was being asked to donate a second time because recipients (this may have changed) were not supposed to ask for a second donation if the first does not work out. </p>
<p>So to all you who are on the donor list - if you are asked to donate, you should not be pressured to give a ‘yes’ answer. There can be very good reasons to say no. You should not be made to feel selfish.</p>
<p>While no one should be made to feel guilt for saying “no”, I’d wager that a donor is in more danger driving to and from the hospital than from the procedure. We, human beings that is, are typically terrible at risk assessment. </p>
<p>I’m in the registry and barring something unforeseen, I’d donate. Yes, there will be risk. But I’d rather put my cards on the table saving, or prolonging, someone’s life than in the usual, mundane ways I do it everyday.</p>