Amit Gupta has found a 10/10 matched donor | Hacker News Reader

Amit Gupta has found a 10/10 matched donor

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1,179 pointsnwest100 comments

> 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 . . .

The central dogma of molecular biology is:

    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.

The 10/10 match refers to HLA typing:

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.

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.

[1] http://www.time.com/time/health/article/0,8599,1858843,00.ht...

Yep, perpetuates for life. It's called Chimerism.

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. ;-)

I was gonna say, walking around with someone else's blood sounds like it'd make for an entertaining crime drama episode.

(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).

CSI: LA did an episode about it in its earlier seasons. (As in, back when it was good.)

This might be the one: http://www.csiguide.com/episodedetail.aspx?csi=157.

Not CSI: LA but CSI, the one set in Las Vegas.

Yeah, I hit the A instead of the V, there. :)

While not a "crime drama", Chimerism is also the main diagnosis in an episode of House: http://house.wikia.com/wiki/Cane_%26_Able

Also in an episode of CSI (http://www.csifiles.com/reviews/miami/bloodlines.shtml)

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

Im sure CSI Miami have it covered.

Original CSI http://www.csifiles.com/reviews/miami/bloodlines.shtml

also, http://en.wikipedia.org/wiki/Genetic_chimerism_in_fiction

As a Forensic DNA Scientist, I can confirm this is indeed an issue.

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...

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)

>>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!

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!

Hmm. I don't think I've seen this as a twist/trope on TV procedurals yet.

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.

I'm rather surprised that a bone marrow match wouldn't have the same blood type. I guess I shouldn't be though.

Edit: chimeracoder

Huh. :)

No, it is pretty surprising.

After reading all this interesting discussion that your comment led to, I just now noticed your username :)

The dichotomy does seem to create complications, unfortunately:

Overall, 75% of AML transplant patients survive year one, 50% make it through year five.

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.

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!

That's awesome. Congratulations! (And jeez yeah not looking forward to the nausea in the coming week but I'll get through it.)

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.

My girlfriend of 27 was diagnosed with the same exact type of leukemia in 2010. She went through a similar process as Amit and so this story resonates deeply with me. She received a bone marrow transplant last summer and still has to go to the hospital every week or two, but she is getting better and better.

Amit, let me wish you the best of luck. The coming days will be tough, sure, but they will seem insignificant compared to all the days you'll get to enjoy in the future. My girlfriend getting her transplant is easily the most beautiful thing I've seen in my life. It's literally life in liquid form.

Overall, 75% of AML transplant patients survive year one, 50% make it through year five.

Our thoughts are with you, best wishes!

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.

Never tell me the odds.

It must be so ________* to have your life expectancy over the next few years calculated like that.

*Jarring, frightening, emotional, scary, disconcerting? What's the right word. Maybe all of them.

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.

Thank you for the wake up call Amit. Like many others here, I just signed up to be a donor because of you. You've inspired us all.

Thank you!

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?

That must be incredibly difficult to deal with.

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.

Thanks a lot for the reply, i wish you well in your hard journey.

Amit, you are fucking awesome.

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.

Clickable link with Amex sponsorship details: http://marrow.org/Join/Join_Now/Join_Now.aspx

Thanks!

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.

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.

Great News indeed! Wishing Amit the best for the procedure. Let's make sure to keep up with the momentum to register donors from minority groups.

Good for him!

Flash of insight: a big part of why he was able to do this, is because he put himself in the public arena and allowed himself to become a celebrity (in some sense).

As someone who is a little scared of becoming famous, this is a wake-up call.

I always focus on the negative aspects (eg being judged) of being known to many people. But if Amit had been as much of as a fraidycat as me, he might not have gotten this chance.

Bottom line: being a public person confers many benefits. It's easy to focus on the 5% who are haters rather than the 95% who are fans. Being obscure is safe, but stifling.

(A friend of mine who is somewhat famous in his niche noted that the lynch mob he had expected never showed up :p )

Amit is also extraordinarily generous. A lot of why he's "famous" is for giving stuff away... his products, his events, his space, his time, etc. I don't think all "famous" people would've received the same outpouring of support.

Certainly great news! This unfortunately hits close to home though.

My own son who is just 1 y/o was just diagnosed with leukemia (ALL pre-B) a few weeks ago 2 days after Christmas and it has been a very rough road. I really hope we won't have to find a bone marrow donor since we have cord blood but that blood could be 'tainted'. Hoping to avoid additional drugs for rejection.

Good to have someone else to follow along with. I've posted a similar blog for my son over at (http://www.noahkeck.com). Would appreciate any prayers and positive thoughts, etc.

It is so heartfelt that this news ends up at the very top of HN even in at the height of the SOPA debate.

I was so eager to find out some details on who matched,the place of the birth of donor etc to get an idea if proximity of birth place matters.. sadly, the blog misses those details. Does anybody know who matched?

Me too. Officially the NMDP doesn't release any details to either party until a year has gone by and they both ascent to it. Been trying to gather all the clues I can from the doctors (who have limited info as well).

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.

Super happy for him :)

We see so many initiatives regarding cancer, yet as cliché as it sounds, you never really understand it until it strikes close to home. My girlfriend was diagnosed with Non-Hodgkins Lymphoma a month ago and is going through chemo and radiation right now.

In the past I might have glossed over things like Amit's story, breast cancer awareness month and pro football players wearing pink shoes...but now it gives me a ton of hope (which I really need) that things like this can save people's lives.

Is there any data on how many actual potential donors did a sample as a result of this campaign? The 7000+ reblogs is a very impressive number - but I'd bet nowhere near all 7000 went through the process. Would those 7000 reblogs even result in 7000 potential donors?

It could provide an interesting perspective on this hot topic of 'painless activism'. While getting tested is pretty easy, there are still plenty of points of process attrition for those to drop out (or not get started).

The funnel has to start wide somewhere.

It's tough to know the exact number, especially since the numbers from the drives are delayed by several weeks and some of the drives we held weren't "tagged" for me, but from what's come in so far, and the drives we ran in India, we should have registered about 10,000 people.

I haven't been able to get a number of the individuals who sent in for swab kits as a result of our efforts, so I'm not including those numbers. But I'm hopeful that with all the posts online + press (CNN, NPR, Wired, BBC, GOOD, tech blogs, etc.) that those numbers add up to something significant as well.

"This is science fiction stuff. I can hardly believe it’s even possible"

This was my reaction too. I literally had to get up from my chair and marvel at what science has wrought.

It's stories like this that make you realise what's really important. It's so easy to get sucked into a life of computers and tech but heartwarming stories like yours, Amit, are what keeps us all human. I wish you the best for the forthcoming weeks, months and years, and I really look forward to hearing your progress on your blog, once you have recovered.

That's fantastic. Good luck Amit!

Great news, nothing the internets can't do as humanity's collective conscience.

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!

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?

Wow! I dont know him and I am brought to tears.

It certainly highlights the benefits of investing in Health Care to improve and save lives. SciFi happening today!

This is great. Very happy that he found a perfect donor. Hope all the operations go well.

Kudos to his friends and other people for helping him find the match!!

This is great news!

Quite a story. There is a tough fight ahead for him.

Good luck Amit.

Congrats on your great news, all the best wishes for you Amit! Stay strong and positive during your operations and treatments!

Not only did it work for him, but this well-publicized screening campaign will help other people find donors as well.

That's great news! Bravo to internet for creating awareness and getting more donors. Hope it all works out for him.

We look forward to reading about your successful recovery on HN during your next stretch. Good luck!

Great news Amit, hope everything goes well. Wish you the best.

Thank you for the update. My mood has lifted 100 fold.

Congrats Amit, wish you all the best.

wonderful news I know 2 people who have had this procedure. Both are well!

wonderful news! i'm glad he motivated me to sign up for the registry too.

Got me to swab :)

Such great news

congrats! good luck my friend

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):

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

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...

wow, and you were the one who got me! i "was" in the same boat..passed it up, but after reading your post and the follow up, i just had to signed up.

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...

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:

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

This just pushed me into signing up too. I thought it would be a long complicated process. It wasn't. Definitely worth it.

nice!

7 minutes? Either your tubes are way faster than mine or I need to start reading faster.

Thanks for the push folks; it was much simpler than I expected, and now I can be excited for some snail mail!

Hooray, glad to hear it! :-)

Thanks for reminding again. I wanted to do this for a long time and I just did.

Got my donor card in the mail today!

As a non-white person, I also registered a few weeks back after seeing the occasional posts on HN.

Thank God!

Oh no, I'm going to be that person.

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).

FWIW, I am agnostic.

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.

Wasn't it Satan that gave use that ability? (as the serpent in the tree of knowledge of good and evil)

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