<i>IGNORANCE:</i><p>The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.<p>If I were ever to consider doing this, someone would have to educate me to the point where my <i>perceived</i> safety is high. Right now I know that this probably won't kill me, but I don't understand it enough to trust it. I imagine that I am not the only person in this situation.<p>I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that's why I felt obligated to share.
Wow... unlike most things on the web, thanks for providing a way for non-USA people to get involved! <a href="http://amitguptaneedsyou.tumblr.com/help-around-the-world" rel="nofollow">http://amitguptaneedsyou.tumblr.com/help-around-the-world</a>
Hi all,<p>Long time reader but never posted before. If anyone here will be attending, I'll be manning the National Marrow Donor Program booth registering donors this Saturday, October 29 at TEDxMidAtlantic in Washington DC (<a href="http://tedxmidatlantic.com/" rel="nofollow">http://tedxmidatlantic.com/</a>). While the booth is intended to be in Amit's honor, I strongly encourage any minorities to join the registry, as the need is severe across all ethnic groups. I'm an AML survivor myself (though no BMT, chemo-only), and I can't emphasize enough that the decision to join the registry is opening yourself up to the opportunity to literally save someone else's life.
Not that it will matter to the trolls, but it's worth noting:<p>The vast majority of championing for this cause is happening on behalf of Amit, not by Amit himself. He was actually quite reluctant to be public about his condition, and has only stepped forward at the encouragement of people close to him.<p>While Amit is at the center of this effort, the narrative has quickly widened to address the much larger issue of underrepresented populations in the bone marrow database. The impact of the efforts inspired by Amit's situation will be felt far beyond that of one person.<p>Even as he fights for his life undergoing intense chemotherapy and all kinds of difficulties most of us have no appreciation for, he continues to do the best he can to help people.<p>Anyone who does that deserves not just our respect and admiration, but our attention and participation.<p>If anyone feels like being self righteous, they might do well to channel that energy into doing something that helps the world instead of leaving insidious comments on a thread.
I applied for a kit when I first heard about this, but the kit's been sitting on my desk for a couple days.<p>I just went ahead and did the swabbing. It was very simple, took only 2 minutes, and was completely non-invasive. (It was also completely free.)<p>If you haven't signed up yet, please do so. Even if you don't care about Amit (I have no idea who he is), you might be able to help someone else in need.
I have registered for the test kit. I really appreciate the way amit and friends have set up the campaign. This gives maximum chance for him to survive and also helps other victims as well, since they might contact you if some one else needs help. Good luck Amit, I hope you will pull through it.
There have been some great results in the news recently regarding CAR T cells in the treatment of Chronic Lymphocytic Leukemia. I think this one might be a winner.<p><a href="http://news.ycombinator.com/item?id=2873604" rel="nofollow">http://news.ycombinator.com/item?id=2873604</a><p><a href="http://penncancer.org/cart-19" rel="nofollow">http://penncancer.org/cart-19</a><p>From what I understand about this treatment, blood is removed from the patient and 'infected' with a harmless HIV virus that has been modified to attach a molecule to T cells. This molecule binds to a receptor (CD19) on the cancer cell, thereby creating T cells that attack the cancer cells. The treated blood is injected back to the patient and the patients body creates more of these cells on it's own- effectively creating an immune response to the cancer cells.<p>Do you think a subset of HN readers could somehow facilitate a project that could help the labs researching ( or planning on researching ) methods for expanding this method of treating cancer? I would like to ( and inspire people here to ):<p>1) find the available labs that can best perform the _steps_ required for this treatment _process_. Basically, get a list of labs.<p>2) help expedite iterative methods for techniques that:
a) speed the development time of the specific _step(s)_, and/or
b) broaden the efficacy of the overall treatment _process_ ( ie. treat other cancers ).
Basically, list the _steps_ in the _process_ and see if there is a way to make them faster, better.<p>3) create tools that allow the people and labs working on this _process_ to communicate as efficiently as possible. Basically, learn how the different labs work and write tools that streamline their collaborative workflow.<p>I have a feeling there are many smart people on this site with free time ( ie. visiting this site often ), technical resources, and organizing skills that could make this happen- fast. Shoot me an email with questions/comments/complaints if you don't want to comment on this thread; I want to help.
Does testing from the swab kits match you up with anyone in need of bone marrow? I have a coworker with leukemia too and I'm sure many others here know of similar situations and it'd be great to have a resource that works for everyone. Posting individual stories doesn't scale very well.
Call me paranoid, but can you use a slightly different name in the registry to keep the prying hands of the state off your voluntary DNA sample? Has there been any known cases of the police using this registry to obtain evidence for prosecutions?
I joined one of the drives a week ago in New York. Swabbing your cheek is easy, filling out the form is easy, and even though the odds are I'm not a match for Amit, I may one day be the match for someone else.<p>From what I understand, the procedures for donation have gotten simpler and less invasive all the time. Giving up a day for the chance to save someone's life is an absolute no-brainer. Easiest decision I'll ever make.<p>Go get on the list.
I don't understand why blood, marrow, and organs have to be donated. I agree that the concept is discussing, but in a life and death situation people should be able to pay to "encourage" a donor.<p>Already there are a lot of people who go to third world countries to buy organs. If it was legal to buy organs people wouldn't have to risk the unsanitary operation condition.<p>Furthermore, seeing as giving blood or marrow is less dangerous there should be no reason not to allow people to buy them.
I'm not in the US, and I'm a white Caucasian, so it won't be any help to Amit. But when the Australian Red Cross phoned me up this morning to set an appointment to donate blood I also told them I wanted to get registered as a bone marrow donor. Until yesterday, I had no idea they could now extract bone marrow cells via blood. Excellent timing on both the post and the phone call!
Once someone with AML gets a marrow what does their 1 year prognosis look like? I computed cancer "yield" a year ago based on cancer data from the state of New York, and Leukemia is (unfortunately) a pretty devastating cancer:<p><a href="http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-of-new-york.html" rel="nofollow">http://d0j.blogspot.com/2010/05/cancer-incidence-and-state-o...</a>
Sad! I am south asian and I just tried to register - they refused to sign me up as I have had hepatitis B in the past. In India, this is so common that people don't even know they have had it (I came to know about it 10 years after having it). I just remember having 'jaundice' once.
I know some other people on the list, and was looking at signing up, but got really annoyed that all the registries seem to demand a third party or multiple third party contact info in order to submit a sample.
Why not go to a good private hospital somewhere in South India.<p>Amit probably has a better chance of finding a matching donor there and the procedure, I'm assuming, is less expensive than over here.
I just registered for a bone marrow match drive tomorrow at OSU. While I'm 100% sure I'm not a match for Amit, I hope that many people show up, and that I'm a match for someone.
while i think the cause is great, i can't help but feel a little sad that it has taken this event to spur everyone in the community to a more philanthropic direction. many of us here are looking to become rich and successful and forget that in many ways, we are already very wealthy.<p>honestly, i think it's a good time to think of all the positive things we can do with what we have - including using our technical knowhow to make the world a better place for those less fortunate.