Thank science! (And also those people who participated in a campaign to help him get a match.)
My mom was diagnosed with a rare variant of AML (APML or APL) in April 2011. When she was admitted to the hospital, she had at maximum one or two days left to live before she would have hemorrhaged to death without medical attention (no platelets).
When APML was first discovered in 1957, the average patient lived 2 weeks and the death rate was 100%. "God" didn't save a single person with APML prior to 1957.
Now the "cure" rate of APML is 95%. It's pretty astounding. My mom has now lived 10 months longer than she would have without modern medical science and hopefully will live a good deal longer because of it.
My mom is incredibly thankful, not to God (who she believes in), but to modern medicine. She even decided to not invite my Christian Scientist cousins to my wedding (which she was able to attend 4 months after her diagnosis) because she strongly feels that people who disregard medical science in favor of God are literally wishing her dead.
The expression "Thank God!" could easily be intended to show thankfulness that medicine and this person's illness crossed paths now vs. 100 years ago.
Not to spark a religious debate, but this reaction seems to be common among the scientific community. Granted, it seems illogical for a god to be selectively-responsible for occurrences in one's life, but I don't think a lack of correlation is proof of anything necessarily. Some people believe in a deity who sparked the big bang and has done nothing more (a "hands-off" management style, if you will). Whether this merits praise/piousness, it's not my place to decide. But since nobody has the answer (and will probably never discover it), everyone's free to believe what they wish as long as it doesn't impose on others (a rare feat, I know).
A lot of people who believe in God, can credit human discovery and science to the God given ability to learn things.
This isn't a place for this discussion so I am not going to go further into this. We should all be happy for Amit and anyone who finds a 10/10 match. I know I was thankful for my donor.
What awesome news! Just yesterday, I was wondering if he found a match. I'm really happy for him and glad that his drive made me sign up for the registry. Here's wishing you a safe and healthy recovery, Amit.
Yup, AML sucks. My mother was diagnosed with APML in April 2011, which is a variant of AML with a much better prognosis (more like 90% than 50%). I was so relieved when we found out it wasn't AML proper and she wouldn't need a transplant, but it did get me to finally sign up for bethematch.org. Not everyone is "lucky" enough to get APML.
Those first couple weeks I was pretty sad and felt sorry for myself a lot. When friends started organizing drives I got totally immersed in helping to organize those and forgot about everything else. When that trailed off, I guess I'd come to terms with it. I wish I knew exactly how long I had, but nobody ever does.
I'm looking forward to using this as an excuse to do a lot of things I'd been putting off and living the life today that I always figured I'd love someday.
> At this point, my blood type changes to the blood type of my donor. And my blood will now have my donor’s DNA, not my own.
That's actually really fascinating. This perpetuates for life? This would seem to imply that a person who's received a transplant will, thirty years later, be walking around with two separate sets of DNA, as the other cells in the body presumably would not change.
Given that DNA is (indirectly) responsible for the way that cells communicate with one another (among other things), I wonder if this dichotomy creates any complications in other ways. (Not counting potential graft-host disease rejection - I'm talking about further down the line).
As a total non-biologist, doesn't the "10/10" refer to the parts of the cells that touch and communicate? That is, the interface? If so, I would guess that what DNA is inside doesn't matter for the purpose of compatibility. Walks like a duck . . .
1) DNA is transcribed to RNA
2) RNA is translated into protein
3) Proteins do work
(This is a gross simplification, but is still a good working model)
In this case, the 10/10 are probably cell surface markers, which are proteins in a specific conformation (with possibly some other types molecules attached). And yes, one of their roles is touching and communication. So the important part for compatibility is that the DNA that ultimately makes those proteins match Amit's DNA. After that, you have made a pretty good match, so you are then just hoping that they are healthy in all other regards.
To use a programming analogy, the 10 markers could represent an Interface definition. Amit's blood has that Interface, but the underlying class has a severe bug. The donor's blood has the same Interface, but has a better implementation.
These are the human MHC molecules that present antigen to T-cells. Unfortunately for the transplant process, a vast number of HLA alleles exist for each locus. This is important evolutionarily for population disease aversion, but makes the process of finding a match very difficult.
Central tolerance makes our immune system unreactive to self antigen. Foreign HLA present in tissue grafts will never be screened out by negative selection since this process requires expression of our own genes to cull any B or T cells that are self-reactive. Anything foreign will most certainly have reactive cell-surface epitopes (to varying degrees of reactivity).
Try reading up on central tolerance, somatic recombination, and clonal selection if you get the chance as it's a beautiful example of nature stumbling upon metaheuristic optimization:
An interesting corollary of this is the possibility of curing AIDS[1]. Of course, the procedure is way to dangerous nor are there enough AIDS resistant donors for this become a viable cure, yet it is fascinating that these few people are one of the few that recovered from an incurable disease.
(SPOILER) this is the twist in a novel I've read:http://tinyurl.com/6r6hkhn
(edit: tinyURL'd so the link text doesn't give tell you what the book is if you don't want to know).
There was an actual real-life crime episode involving that, look up Andrei Chikatilo, the police and a real trouble catching him because of mismatching blood types.
I'd give you a wikipedia link, but apparently I can't use google cache.
Actually, English wikipedia does not seem to mention that, and the Russian one says that not only Chikatilo did not have mismatched AB types of blood and sperm, but also that the condition has been proven to be genetically impossible (citing a broken link as a source for this statement, though).
Though not quite a crime drama, something like this has already happened. A woman trying to get a kidney transplant was informed that two of her sons couldn't be hers. Complications ensued. http://www.katewerk.com/chimera.html
I watched Gattaca again this weekend. This sure seems like a simpler option (assuming it affects the urine) than everything the main characters had to go through (collecting and storing blood and urine samples, making finger pouches for blood prick tests, etc.)!
I'm sure it does cause potential complications to an extent. However, I know of at least two comparable situations that occur without medical intervention:
1) Pregnant women -- During pregnancy, and to some extent afterward, the mother's blood contains cells from the fetus she is carrying. Some of these cells migrate to other places of the body. Scientists hypothesize that this is part of why pregnancy may lower cancer risk -- something about how the mother's immune system deals with these foreign cells. This is called fetal microchimerism. http://www.scientificamerican.com/article.cfm?id=fetal-cells...
Just when you start to think that you've seen the weirdest/strangest/most amazing thing in nature, along comes something else that you wouldn't even begin to imagine was possible. Thanks for the Chimera link!
Yes, my brother had a stem cell transplant using my stem cells. At one point a year after transplant he got some graft-vs-host disease and one of the first tests they do is a Chimerism test to see how much percent of his blood stem cells are actually mine. The way they do that is by comparing his blood to a base sample of mine. Or otherwise, they could compare his blood to his hair sample (which retains his old DNA), and see if its different. I'm obviously over simplifiying it, but as far as the crime situation some others are talking about on this thread, note that the identical footprint will only be in the DNA in blood. If you take skin/hair etc, it will still have the original DNA set.
More importantly, to most of us Amit is just as much a stranger as the millions of other people who are touched by leukemia and cancer in general. Make sure you are donating in one way or another.
I decided to sign up to donate my stem cells because of Amit. I did not realize how little it cost me to save a life and after that I felt irresponsible if I didn't sign up.
I encourage everyone to consider becoming a stem cell donor and I thank Amit for teaching me about it. I am relieved he found a match. He certainly deserved it.
My father-in-law was diagnosed with multiple myeloma, which is also a cancer of the blood, about 7 years ago. He has had two stem cell transplants since than, one six and a half years ago and one a year and a half ago. Both times he nearly died, but after getting through the scary stages he's out mowing his lawn and spending time with grandchildren that he otherwise would never have met. Science is truly amazing, and we're so grateful to the medical professionals who took care of him and helped give him many more years of life than he otherwise would have had.
This is really great and i wish him well, but to my understanding at the ending of the post, even if all of this is successful, Amit still has a really short life expectancy? Can he perpetually do this over and over again to combat the disease and prolong his life longer?
It depends. If the cancer relapses it can be resistant to chemotherapy I've been exposed to before, which makes the prognosis a lot worse. There are alternative chemotherapies though and they can repeat the transplant. But yeah, if they can eradicate all traces of the cells now, and if the donor T -cells succeed in fighting off any cancerous cells that remain, the odds are a lot better.
It is difficult to deal with, or was definitely so at the beginning. But I guess people are really adaptable -- I've a list of things I want to do and try when I get out, and right now I feel like even if I only had another year I wouldn't be too bummed.
Note that if you sign up with the donors.marrow.org registry in January, American Express is covering all the registry's costs (about $100 per new donor candidate), so it's a particularly good time to sign up.
I'm curious about the long tail effects of this. I wonder how many people in need found a donor match from all the people that got tested for this campaign?
I found out while in a taxi cab this morning & I started crying. So thankful. So glad I could (maybe) help.
It's such a simple thing to save someone's life like this. Please register to be a marrow donor today.
It's no more work than sucking on a lollipop & even the donation process these days is usually not much worse than blood donation (it just takes longer):
This is ESPECIALLY powerful if you're non-white or mixed race, because -- you probably remember this from when Amit's story started -- the chances of finding a match for an ill non-white or mixed race person is about 1 in TWENTY THOUSAND.
That means that many of these sick people could be saved -- the tech is there, the science is there, but the donors simply aren't. This is hideous, but something we can absolutely fix.
The number of people who registered for Amit will almost surely save many other lives.
All right, you're the one who finally got me. Each time Amit's story has come up on HN someone has posted a link how to join, and each time I'm closer to deciding to do so, but always got a little scared before I pulled the trigger.
Now that I see Amit found a donor and the system works (my eyes teared up a little reading his post), I finally decided I need to join.
So, for everyone else like me who has needed just a bit more motivation; go on and join the registry. I just filled out the forms and requested the cheek swab kit. It takes about 15 minutes to fill out the forms, and then in two weeks they'll send you a cheek swab kit with instructions and a return envelope. Not too bad, so far...
Thank you, lovesdir & fady!! You could totally have just set yourself up to save a life. Isn't that amazing? Yes, I'm all moony right now but I'm so happy.
If you're reading this & on the fence about registering, especially if you are non-white or mixed race (& ESPECIALLY Asian + Caucasian), please check out this little site about an adorable little 4-year-old boy who loves sharks and desperately needs to find a donor:
And do it now. Not only because doing it now means it'll actually get done, but because Amex is sponsoring the charity this month and paying for all their test-related costs -- meaning the more tests they register in January, the more money Be The Match will have left for future months & for getting the word out:
I'll admit I got a little "misty" reading that - what a roller coaster. I'd love to know a little bit more about the donor (e.g. who they are, how they were found, etc..) Godspeed Amit!
Congratulations! My life was just extended going through the same exact thing your going to go through. I am 7 months out and life is grand. Be thankful for the small things like popsicles, laughing, and cold wash-clothes when you start throwing up.
Everything will be wonderful. Best of luck to you Amit!
For sure! I assume you have already been through tons of nausea. I relapsed from my original AML treatmeat a few years later and had to undergo transplant. The chemo before the transplant was the worst I have ever had. It was my 11th round of chemo since I started with cancer back in 2008. Just sit up in the morning and eat what you can, rest a lot and always talk to everyone and ask them how their days are going. I found that hearing others pleasures made me get through my experience much easier. Plus it takes the mindset from how crappy you are feeling to how good the future will be for you.
104 comments
[ 4.1 ms ] story [ 159 ms ] threadThank science! (And also those people who participated in a campaign to help him get a match.)
My mom was diagnosed with a rare variant of AML (APML or APL) in April 2011. When she was admitted to the hospital, she had at maximum one or two days left to live before she would have hemorrhaged to death without medical attention (no platelets).
When APML was first discovered in 1957, the average patient lived 2 weeks and the death rate was 100%. "God" didn't save a single person with APML prior to 1957.
Now the "cure" rate of APML is 95%. It's pretty astounding. My mom has now lived 10 months longer than she would have without modern medical science and hopefully will live a good deal longer because of it.
My mom is incredibly thankful, not to God (who she believes in), but to modern medicine. She even decided to not invite my Christian Scientist cousins to my wedding (which she was able to attend 4 months after her diagnosis) because she strongly feels that people who disregard medical science in favor of God are literally wishing her dead.
Not to spark a religious debate, but this reaction seems to be common among the scientific community. Granted, it seems illogical for a god to be selectively-responsible for occurrences in one's life, but I don't think a lack of correlation is proof of anything necessarily. Some people believe in a deity who sparked the big bang and has done nothing more (a "hands-off" management style, if you will). Whether this merits praise/piousness, it's not my place to decide. But since nobody has the answer (and will probably never discover it), everyone's free to believe what they wish as long as it doesn't impose on others (a rare feat, I know).
FWIW, I am agnostic.
This isn't a place for this discussion so I am not going to go further into this. We should all be happy for Amit and anyone who finds a 10/10 match. I know I was thankful for my donor.
Our thoughts are with you, best wishes!
*Jarring, frightening, emotional, scary, disconcerting? What's the right word. Maybe all of them.
I'm looking forward to using this as an excuse to do a lot of things I'd been putting off and living the life today that I always figured I'd love someday.
Good luck Amit.
That's actually really fascinating. This perpetuates for life? This would seem to imply that a person who's received a transplant will, thirty years later, be walking around with two separate sets of DNA, as the other cells in the body presumably would not change.
Given that DNA is (indirectly) responsible for the way that cells communicate with one another (among other things), I wonder if this dichotomy creates any complications in other ways. (Not counting potential graft-host disease rejection - I'm talking about further down the line).
In this case, the 10/10 are probably cell surface markers, which are proteins in a specific conformation (with possibly some other types molecules attached). And yes, one of their roles is touching and communication. So the important part for compatibility is that the DNA that ultimately makes those proteins match Amit's DNA. After that, you have made a pretty good match, so you are then just hoping that they are healthy in all other regards.
To use a programming analogy, the 10 markers could represent an Interface definition. Amit's blood has that Interface, but the underlying class has a severe bug. The donor's blood has the same Interface, but has a better implementation.
http://en.wikipedia.org/wiki/Human_leukocyte_antigen
These are the human MHC molecules that present antigen to T-cells. Unfortunately for the transplant process, a vast number of HLA alleles exist for each locus. This is important evolutionarily for population disease aversion, but makes the process of finding a match very difficult.
Central tolerance makes our immune system unreactive to self antigen. Foreign HLA present in tissue grafts will never be screened out by negative selection since this process requires expression of our own genes to cull any B or T cells that are self-reactive. Anything foreign will most certainly have reactive cell-surface epitopes (to varying degrees of reactivity).
Try reading up on central tolerance, somatic recombination, and clonal selection if you get the chance as it's a beautiful example of nature stumbling upon metaheuristic optimization:
http://en.wikipedia.org/wiki/Central_tolerance
http://en.wikipedia.org/wiki/Clonal_selection
http://en.wikipedia.org/wiki/V(D)J_recombination
To me, these are starker, more potent examples of biological optimization processes than evolution -- they're ongoing in your body right now.
[1] http://www.time.com/time/health/article/0,8599,1858843,00.ht...
I'd be interested (obviously) in finding out what other implications this might have for me long term besides enabling me to life a life of crime. ;-)
This might be the one: http://www.csiguide.com/episodedetail.aspx?csi=157.
I'd give you a wikipedia link, but apparently I can't use google cache.
also, http://en.wikipedia.org/wiki/Genetic_chimerism_in_fiction
1) Pregnant women -- During pregnancy, and to some extent afterward, the mother's blood contains cells from the fetus she is carrying. Some of these cells migrate to other places of the body. Scientists hypothesize that this is part of why pregnancy may lower cancer risk -- something about how the mother's immune system deals with these foreign cells. This is called fetal microchimerism. http://www.scientificamerican.com/article.cfm?id=fetal-cells...
2) Chimeric people. In rare cases, a human can be born that is made up of two separate DNA profiles. http://en.wikipedia.org/wiki/Chimera_(genetics)
Completely off-topic: I feel more grateful for the access to Wikipedia after a blackout day.
Good luck, Amit, with your plan!
Edit: chimeracoder
Huh. :)
Overall, 75% of AML transplant patients survive year one, 50% make it through year five.
I encourage everyone to consider becoming a stem cell donor and I thank Amit for teaching me about it. I am relieved he found a match. He certainly deserved it.
That must be incredibly difficult to deal with.
It is difficult to deal with, or was definitely so at the beginning. But I guess people are really adaptable -- I've a list of things I want to do and try when I get out, and right now I feel like even if I only had another year I wouldn't be too bummed.
This was my reaction too. I literally had to get up from my chair and marvel at what science has wrought.
It's such a simple thing to save someone's life like this. Please register to be a marrow donor today.
It's no more work than sucking on a lollipop & even the donation process these days is usually not much worse than blood donation (it just takes longer):
http://marrow.org/Join/Join_Now/Join_Now.aspx
This is ESPECIALLY powerful if you're non-white or mixed race, because -- you probably remember this from when Amit's story started -- the chances of finding a match for an ill non-white or mixed race person is about 1 in TWENTY THOUSAND.
That means that many of these sick people could be saved -- the tech is there, the science is there, but the donors simply aren't. This is hideous, but something we can absolutely fix.
The number of people who registered for Amit will almost surely save many other lives.
So please, please register: http://marrow.org/Join/Join_Now/Join_Now.aspx
Now that I see Amit found a donor and the system works (my eyes teared up a little reading his post), I finally decided I need to join.
So, for everyone else like me who has needed just a bit more motivation; go on and join the registry. I just filled out the forms and requested the cheek swab kit. It takes about 15 minutes to fill out the forms, and then in two weeks they'll send you a cheek swab kit with instructions and a return envelope. Not too bad, so far...
good luck; eat healthy.
update: just finished signing up and it took a whole 7 mins. thanks for the nudge :) http://dl.dropbox.com/u/103326/Slingshot/Pictures/Screen%20S...
If you're reading this & on the fence about registering, especially if you are non-white or mixed race (& ESPECIALLY Asian + Caucasian), please check out this little site about an adorable little 4-year-old boy who loves sharks and desperately needs to find a donor:
http://kyleneedsyou.org/
And do it now. Not only because doing it now means it'll actually get done, but because Amex is sponsoring the charity this month and paying for all their test-related costs -- meaning the more tests they register in January, the more money Be The Match will have left for future months & for getting the word out:
http://marrow.org/Join/Join_Now/Join_Now.aspx
Thanks for the push folks; it was much simpler than I expected, and now I can be excited for some snail mail!
It certainly highlights the benefits of investing in Health Care to improve and save lives. SciFi happening today!
Everything will be wonderful. Best of luck to you Amit!
Kudos to his friends and other people for helping him find the match!!