
I am an 18-year-old techie/student. I have leukemia and need your help - mehrzad
https://github.com/m3hr/swabbathon-swabbers
======
shykes
Hi Mehr, I registered last year after someone very close to me was diagnosed
and treated - now in remission. I added myself to your list, I hope it will
help.

Here are a few things I learned after being closely involved with someone
else's treatment. You may have heard all this already, sorry if I'm stating
the obvious. But it never hurts to remember!

First: the treatments have gotten incredibly better in just a few years. The
science and engineering in this field are progressing at a rate comparable to
software. I also learned that age is an important factor: the younger you are,
the better your body will react to chemo and transplant. And you live in the
US, which has access to the best staff and equipment in the world.

Second: never forget that you can play a really important and active role in
your care. Don't be passive! Do research on your own, don't hesitate to make
doctors repeat themselves or explain in more detail, and approach the whole
thing like teamwork: your doctors and nurses are one half of the team, and you
are the other half. Yes, they know what they're doing. But nobody will be more
invested in this than yourself. And remember that your state of mind has a
true impact on your body.

I hope this helps... Good luck with the search and the treatment.

~~~
mehrzad
Thank you!

For your first note: I have done some research and you're absolutely right!
What's funny to me is that even if chemotherapy doesn't work, there are
essentially plans B, C, D, etc. The new treatments are really really
impressive and I'm young.

For your second: yes, I have become very active in this, especially when it
comes to nutrition. The unfortunate part though is when there is so much
conflicting information from studies, because the role of nutrition in cancer
treatment has been only preliminarily studied. For example there is evidence
that vitamin C interferes strongly with methotrexate, one of the most common
chemotherapeutic drugs. Or a diet high in folic acid could cause similar
trouble (when I'm already doing a leucovorin rescue). And then another study
about how polyunsaturated fats can cause metastasis -- wait no they are
effective against tumors in another study. Anyway my point is that I still
agree with you and I ask a lot of questions and am (rather) vigilant, but
unfortunately some things just aren't clear and my doctor told me to be a bit
calmer about my diet. But how can I, when those nutrients can selectively feed
or attack the tumors according to nih.gov! Ah!

~~~
shykes
First off, I would definitely listen to your doctor when they strongly
discourage something. In our case for example, folic acid was also a no-no.

Here's a book that was very useful to us: "The Cancer-fighting kitchen" by
Rebecca Katz and Mat Edelson.

One more piece of advice on nutrition (I'm just the messenger here). Listen to
your body, at different parts of the treatment it will tell you different
things, your tastes will change etc. Also, you can't go wrong drinking lots of
water!

~~~
seesomesense
" Also, you can't go wrong drinking lots of water!"

Actually, you can.

Look up hyponatraemia, SIADH or water intoxication. And for an example of
SIADH in a case of leukaemia:
[http://www.ncbi.nlm.nih.gov/pubmed/19367383](http://www.ncbi.nlm.nih.gov/pubmed/19367383)

And there was the well known Wii case:
[http://www.dailymail.co.uk/news/article-1224051/Wee-For-
Wii-...](http://www.dailymail.co.uk/news/article-1224051/Wee-For-Wii-water-
drinking-contest-death-Jennifer-Stranges-family-awarded-10m.html)

------
danielna
Hi Mehr,

I'm a leukemia survivor (AML) and was diagnosed when I was 21 and in
undergrad, roughly 8 years ago. I started www.cheekswab.org in 2012 to educate
people, especially ethnic minorities, about the exact complications facing
minorities who need bone marrow transplants. I also wanted to fill a need that
I saw around direct communication around what it's like to be a donor, what
the statistics are, what the process is like, and interviews with real people
who have gone through the donation process recapping their experiences. I
haven't done much with Cheekswab in the last several years but my new years
resolution for 2015 was to figure out a path forward with it.

I live and work in NYC as a software engineer and have a lot of experience
running these sorts of drives, particularly on college campuses. Feel free to
reach out to me if you'd like to talk, whether about leukemia or bone marrow
drives: username at gmail.

~~~
mehrzad
Holy shit this is amazing. And I'm so happy you have been event-free for so
long! (To be honest, Wikipedia makes AML sound terrifying; I have ALL). I just
looked over the site and the last post and accompanying blog made me feel
better about jumping into this next round of treatment. Thanks so much. I'll
definitely share this.

------
god_bless_texas
I joined the national marrow registry in 1995 while at Fort Benning doing Army
stuff. Donated in 1997 to a girl with leukemia. They did the procedure where
they drilled into my iliac (sp?) crust.

It hurt like hell for 12 hours and then I walked around Washington DC with a
rucksack and gear to see our nation's capital. At the time it was a
specialized process that Georgetown University was doing.

I matched again in 1998, but this time it was not a close enough match.

I cannot emphasize enough how seriously I would go back right now and do this
all over again, even once a month if I had to. You're saving a life.

Statistically everyone has plenty of matches, but the problem is that your
blood has to be in the registry so they can test and know. Join the registry,
if not for the life you save then the wonderful happiness it will bring for
helping a fellow human.

Mehrzad - friend - I do hope you find a match. I'll be thinking about you.

~~~
robbiep
Tech advances mean that bone marrow aspirates are no longer necessary most of
the time, they can take a regular blood donation from a vein and then extract
the desired cells from that in the majority of cases today

~~~
god_bless_texas
I've heard this, and it's a great thing. Even the old type of donation is not
too bad considering the upside of the potential outcome.

Thanks for adding it, people need to know this can be as simple as hooking up
an I.V.

~~~
aquark
I had the wonderful opportunity to donate this way earlier this month. It was
totally painless (modulo a couple of needle pricks) and just required some
time hooked up to the machine (~6 hours) and a course of drugs beforehand to
boost stem cell production for a few days.

For the benefit it can bring someone it is a total no-brainer decision, and
I'd do it again without a second's hesitation if necessary.

------
derwildemomo
If you are living in germany, [https://www.dkms.de/en/become-a-
donor](https://www.dkms.de/en/become-a-donor) has you covered. They'll send
you a home kit so you don't even need to leave your house to register.

------
chimeracoder
There are a number of people who are asking about countries besides the US.
Because of Bone Marrow Donors Worldwide[0], it doesn't matter where in the
world you are and where you register, as long as you register with an
organization which shares their info with the BMDW.

OP, in case you haven't thought of this already: CISA is the Columbia Iranian
Students Association. They may be able to help you reach out to other Iranian
friends and family. Turath is the Arab students association; that may be worth
a shot too. Great Neck is right nearby, and there is literally a 100% chance
that someone at CISA is from Great Neck and will be able to get the word out
to the Persian community there.

You're from LA so I'm going to guess you're either from Beverly Hills or are
in touch with the community there, but if not, someone at CISA will definitely
be as well.

[0] [https://www.bmdw.org/](https://www.bmdw.org/)

~~~
mehrzad
Hi chimeracoder, first of all big fan of your work.

I did reach out to CISA and the co-presidents got in touch with me. And my dad
has gotten the word out in the LA Iranian community. I don't know anyone from
Great Neck though. And it always feels awkward asking someone that I'm not
related to to put up flyers for me. A sense of shame when I need it least!
Thanks for the heads up, I had forgotten about Great Neck.

------
danso
Good luck with this project. I highly suggest using Google Forms...I don't
think the Github/fork model is especially efficient for a signup list.

~~~
mehrzad
I went with github for a "tech theme" because I was posting in the hackathon
hackers facebook group. Now it's feeling a bit unwieldy but I'm not sure if I
can stop it now hehe. I was hoping to do some analysis on it with a ruby
script or something that could have gone along with the files. Now I'm not
sure what to do.

~~~
jpfielding
probably not going to put it in github, but i registered with be the match on
11.02.2010. good luck.

~~~
daxfohl
igualmente, except 5 min ago. To OP: thanks for bringing awareness. Unless
you're lying, in which case I still applaud the insight of how to reach a
certain audience (this one), you lying sack :).

------
rokhayakebe
OP.

The US Iranian community is big, if you have flyers or if you could create a
simple one pager, I will print and drop it at 5 or 6 Persian stores around the
area I live in (Orange County). There are many Persians here, you never know.

Feedback for anyone running a Donor Match site.

You would think that someone who is willing to help save lives would spend 5
minutes registering, but not always.

I went to the site and they are asking me all sorts of questions (just 4),
which are COMPLETELY legit, but all I want is to give some information to say
I am willing. If I match someone you can email or call me for more
information, educate me and such. I may still end up being a 50/50 Yes, but at
least I have shown my willingness to help.

When you ask a question such as "Do you understand all the implications,
etc..." what I am supposed to think? I am thinking let me go and research the
implications because I am not aware of all of them, or even 2 of them.

~~~
iamcreasy
80% of the time they will collect stem cells from your blood.

~~~
rokhayakebe
You've given me more information than I have ever needed to know on the
subject to readily sign up. Thank you!

------
hashemian
Hi Mehr

I'm sorry to hear about this, but glad to know you are determined to fight
this back.

I'm also Iranian, right now living in Canada. I will register ASAP, hope it
can help you or other similar patients.

My sister was diagnosed with Leukemia when she was 18 as well (she is living
in Iran) around 7 years ago, but she was cured and she is been living a
healthy life since then. Don't loose your hope, try to stay positive, you
definitely know how important it is.

One more thing, I think it's amazing that you have started this thread to
discuss this. You can start an effort to raise awareness on Leukemia and use
your technology background to reach as many people as possible. Hopefully one
day enough people will register in BMDW, so no one has to stay in waiting list
any more.

------
phantom_oracle
Stupid question but something that bothered me about bone-marrow...

Is it something that is limited in quantity and once it is gone it has left
your body completely? (it won't regenerate to previous levels)

Perhaps any experts can shed light here and help break any misconceptions
about this.

~~~
richdougherty
Donors will regenerate all the cells and recover completely. There are two
types of donation, peripheral blood stem cell (PBSC) and bone marrow.

From the US donor site: median PBSC donor recovery time is 7 days, median bone
marrow donor recovery time is 30 days.

[https://bethematch.org/Support-the-Cause/Donate-bone-
marrow/...](https://bethematch.org/Support-the-Cause/Donate-bone-
marrow/Donation-process/Donating-PBSC/)

[https://bethematch.org/Support-the-Cause/Donate-bone-
marrow/...](https://bethematch.org/Support-the-Cause/Donate-bone-
marrow/Donation-process/Donating-bone-marrow/)

------
jxm262
Just sent a PR. I actually joined the registry a couple years back on a whim.
Thought it would be a good way to help people, although I'll be nervous as
hell if actually called up to donate :)

------
pcr0
Best of luck.

For maximum effect, I'd suggest making an analogue website to go along with
the project because at present this initiative is limited to tech people.

------
jcr
First of all, you should put contact info in your github profile, and in the
"about" section of your HN profile (the email field is only visible to you).
Many prefer to discuss health matters privately.

The issues you face as an ethnic minority are severe. More than 15 years ago,
it was an expensive and error prone nightmare to attempt doing an
international search across all (or relevant) country specific donor
databases. Hopefully things have gotten better since then.

If memory serves, there was a national marrow donor database in Iran.
Hopefully, you have friends or family who know Persian well enough to help you
find it.

If you are unable to find a donor match, you might want to consider a cord
blood transplant. In short, they use stem cells harvested from cord blood to
rebuild your bone marrow after ablative chemo. It was a highly experimental
treatment method more than a decade and a half ago, but it did have a number
of successes, and the state of the art in treatment has most definitely
improved since then. Yes, my knowledge of leukemia treatment research is badly
outdated.

------
kom107
Hey Mehrzad!

Just wanted to say good luck to you as your start your treatment course. I'm
in healthcare IT now but I worked on a BMT/Stem Cell Transplant floor as a
bedside care provider for nearly 2 years, and my partner is very well
respected in that field (we met at work).

Anyway, PLEASE make sure you walk a lot on the floor and stay as active as you
possibly can. Also, wash your hands before they touch your mouth every single
time. Be a fanatic about hand sanitation.

For everyone else, especially minorities, please sign up to be a donor. It's a
really easy process for you (if you match, you'll get a shot to promote cell
generation, and then they'll extract the cells they need), and it literally
means life for someone else.

If you need anything, reach out @iamkatemcg on twitter and I'll help however I
can.

------
Protostome
I'm an Israeli with roots in Iraq. I would love to help, but don't know how...
How do International donations work?

Also, don't know if its relevant, there are a lot of persian jews here in
Israel, I'm sure many of them are suitable candidates.

~~~
nikhilgk
You register with your regional or national donor group. They are all
networked for the most part. I live in the US and three years ago I donated to
someone in Italy.

------
SEJeff
I do have a friend who's family absolutely _swears_ by alkaline water. They
heard that it had been observed to help cancer patients in Japan and the
machine was a registered medical device in Japan. They bought one and
converted everything to using alkaline water.

Indeed, my friend's wife's breast cancer was completely cured sans Radiation
therapy. I'm not saying it is magic, or even believing that it will help you,
only sharing an anecdote from two real people I know who it did work for.

It is likely worth considering as _an_ option.

~~~
knodi123
The reason you're getting downvoted a lot is that HN is pretty hostile to
snake oil and pseudoscience, and alkaline water is a poster child for both.

I'm happy to be corrected if I'm wrong, but I think that a registered medical
device does not mean that it _works_ \- just that it's _not harmful_. There
have not been any studies showing alkaline water is beneficial for anything
other than possibly slowing bone loss.

I've read a lot of the marketing literature around water alkalizers, and
whether or not they _actually_ do something beneficial, I can promise you that
the marketing materials are full of intentionally deceptive claims (like
"registered medical device"), and discredited theories, and just plain
gibberish that depends on wowing the reader with a lot of science-sounding
words.

If it's not snake oil, then it's a real shame it's sold using snake oil sales
techniques.

~~~
SEJeff
_shrugs_ don't much care. I don't know if it does or does not work. I was just
sharing I worked directly with a guy who's wife got breast cancer and that was
the only thing she did to treat it as she refused chemo or radiation therapy.
She is still in full remission and their whole family swears by the alkaline
water.

I don't much care either way, take my anecdote as you will. A few downvotes
aren't really going to hurt a 1500+ karma :)

~~~
dang
There's nothing wrong with anecdotes on HN. Threads here are conversations,
and anecdotes are what conversation is made of.

~~~
SEJeff
Thanks for keeping HN awesome.

------
thumbtackthief
Hi Mehr,

I wish you the best of luck. I would donate gladly except healthy gay men can
still not donate blood or marrow, despite there being no medical reasoning
behind that. I'm sorry for your situation.

------
kaybe
Me and all the registered ones I know are registered because the national
organisation set up a stand in the university mensa one day.

It only required filling out a form and a bit of blood, which took about 10
minutes and was a no-brainer for most of us. I wonder why it is not done more
often like this, since it requires very low initiative from the people and
will reach everyone who thought 'maybe I should' and then didn't (which are a
lot of us).

------
nicolethenerd
Joined the registry in 2012, but your post prompted me to make sure they had
my latest address info. Good luck w/ everything! I hope you find your match!

------
berdario
Question: I subscribed to a bone marrow registry a couple years ago, but now I
relocated to another country. Should I register again? (both countries are in
the EU)

I guess that if I'm compatible I will still be notified by the registry in the
old country (or at least, my family will be notified)... and it'll only be a
bit of an hassle to handle the donation, but it shouldn't be terribly urgent
to resubscribe, am I right?

------
blazespin
I know this probably can't help you (Canadian, not Iranian), but what would
you recommend for Canada? I found this on your links
[https://www.blood.ca/en/stem-
cells?utm_source=onematch&utm_m...](https://www.blood.ca/en/stem-
cells?utm_source=onematch&utm_medium=redirect&utm_campaign=onematch), but they
say stem cells and up to age 35.

~~~
thethinker1032
It's suggested that the most optimal profile are people under 35, but I don't
think people over that age are automatically disqualified. It's just that the
majority profile they are looking for contains males who are under 35.

~~~
blazespin
Thank You For Making the Decision to Register for OneMatch Joining the
OneMatch Stem Cell and Marrow Network is simple. If you’re between the ages of
17 and 35 and in good general health, you’re eligible to sign up. You can
start the registration process here.

------
christiangenco
I have a stupid question: what do I actually need to _do_ to be registered?
Like, am I going to be driving somewhere to have a needle stuck in one of my
bones, or do they just draw blood, or do I just... give someone my name?

I'd totally do this if it was laid out in a super simple way, and wasn't going
to cause me significant long term harm, pain, or risk thereof.

~~~
mehrzad
The registration is a series of questions and inner cheek swabs!

~~~
davegardner
In Australia it's a little different as they don't do a cheek swab. You
register via a Red Cross blood service donor centre. It involves taking a
small sample of blood - if you're donating blood at the same time then they
just take it at the start of the donation (no additional needle required).

Good luck. I really hope a match is found for you.

------
sundvor
Not going to share my details on github, but I registered as a bone marrow
donor here in Australia a few years back. Yet to hear anything of it, however
if there's ever a match I will be very happy to potentially save someone's
life. Am also a semi regular blood donor; every drop helps.

Seriously hope you find a match mehrzad!

------
chrismartin
What percentage of patients in your situation are able to successfully find a
match? I'm guessing it depends on how many registered donors share your
ethnicity. Do you have access to any donor registries in the Middle East,
where you are more likely to find a match?

~~~
mehrzad
The site says that Caucasians have a 97% likelihood to find a match, not
including stem cells from umbilical cords (which leads to a slower recovery
time and thus a higher chance of infection but less likelihood of graft-vs-
host disease). And while I am Caucasian, I'm not of European descent, which is
what most of the registered members of BTM are. I sort of have contacts at the
main hematology unit at a Tehran hospital and many cousins. Iran is part of
the international group of registries in BMDW, but I'm not sure how easy it
would be to get someone from Iran here. Humanitarian things like this should
get someone a visa, if necessary, I'm hoping.

------
saneshark
M3hr, I am Iranian too. I am signing up now. Who knows, maybe I can help. :) I
wish you the best of luck.

Kamyar

------
Saggitarius
I'm registered in Germany (DKMS), do I have just to put the URL (of course
with my other data) [http://www.dkms.de/](http://www.dkms.de/) in the
REGISTERED.md file?

------
middleclick
I am Canadian but of Middle Eastern/Indian descent. How do I help you?

~~~
mehrzad
I guess join the biggest Canadian registry that is part of BMDW! By the way,
do you consider India to be part of the Middle East?

~~~
flippant
He could be half Indian.

------
bg4
Does anyone know why someone with sleep apnea cannot be a bone marrow donor?
I've tried to sign up in the past but I was rejected for that reason.

------
roflchoppa
Hey Mehr, I got joined the bethematch fund in high school about 5-6 years ago,
do i need to update my screening, or anything like that?

~~~
jacalata
You need to make sure your contact details are still valid so they can find
you if you do get matched.

------
comboy
Great idea. Perhaps to avoid conflicts it would be better for everybody to
have a separate file in predefined format?

~~~
mehrzad
I had gotten some advice not to do that for aesthetic reasons, but now it
seems necessary.

------
arjn
Hi Mehr, I'll be happy to sign up. I hope you find a match soon.

------
dippyskoodlez
PR submitted, I just got my confirmation e-mail a few weeks back :)

Good luck!

------
alexkadis
Added my info - registered with GiftofLife back in 2011.

------
luckoftheend
Genderless no form factors as an option

------
spoiledtechie
signing up, hopefully, I can help someone too.

------
anon3_
Good luck. You have my moral support. I hope you have your own personal
support network as well.

I wish you the best of luck in your treatment.

Get healed and get back to the front!

------
MichaelCrawford
Cancer runs in my family; quite likely it will get me in the end as well.

My own experience with other life-threatening illnesses yields the insight
that if you are to survive, it is your mind that will enable you to do so. If
you cannot overcome the mental challenge, no amount of medicine will help you.

A close friend once rang up the US Olympic Bicycling coach to inquire as to
how he might make the team:

    
    
       "Ride 120 miles every day for the next since months.  Call me again after that."
    

My friend could ride a lot farther than 120 miles in a day; he really was that
good. Even so he did not even try because he was intimidated by the prospect
of working so hard for so long.

