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.
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!
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!
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.
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.
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.
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
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.
If you are living in germany, 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.
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.
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.
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.
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 :).
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.
Sorry for the late answer. Email me whatever you would like to have shared and I will print and take them to all the local Persian stores. 1000app at gmail.com.
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.
Lots of valid comments here, but your body creates it over time. Until you're 100%, you are more susceptible to infection, crave an iron-rich diet, and become tired more quickly. After a while you just realize you're back to normal and forgot you ever felt weird.
For me it took 14 days before I had full energy, and 30 days before I quit getting tired easily.
It regenerates to previous levels but the time depends on the amount you donate. For instance a small donation from the pelvis regenerates in few weeks.
OP here, marrow continuously grows back I believe. Marrow is basically the formation of your blood cells and those are some of the fastest dividing in the body. Up to five percent of the marrow should be unformed, new cells called blast cells.
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 :)
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.
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.
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.
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.
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.
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 :)
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.
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).
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!
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?
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.
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.
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.
at least in germany you have to go no where. You just register online at DKMS and they will send you a Q-tip to collect a bit Saliva of yours which you send back (free shipping). So it's no work or costs at all
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.
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.
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?
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.
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.
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.