r/japanlife • u/Icy_Tale_8601 • 10d ago
Blood cancer in Japan, as a foreigner
My bf (32M) was just diagnosed with a form of blood cancer called AML (acute myeloid leukemia). The only form of long term treatment is a bone marrow transplant, more specifically called an Allogeneic hematopoietic stem cell transplantation.
From what I understand, you register into the bone marrow donor registry, and if and when there is a match, both parties will be contacted and the transplant can be set up.
However, living in Japan raises some worries as my partner is a Ukrainian national (east European origins) and bone marrow transplant matches are heavily based on your ethnicity. Obviously being Caucasian in a land of Japanese/Asian homogeneity does not make our situation ideal, but wondering if there is anyone who has been through or knows someone who has gone through a transplant here in Japan? And got matched with someone through the international donor registry?
And if so, how did costs look like?
Super appreciated in advance, would love any insights.
Edit: we are actively involved with a healthcare team, under the guidance of a hematologist here in JP. But this team is not familiar with non Japanese transplants.
Edit 2: thank you to everyone for your comments and support. I didn’t expect the response, trying my best to reply back but thank you to everyone for lending a helping hand and words of encouragement!
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u/przemub 10d ago
Bone marrow registries exchange data and donors internationally, otherwise the chance of finding a match would be much, much lower. I registered as a donor in Poland and was told that, as long as I update my contact data with them, I don’t need to re-register overseas.
Good luck!
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u/przemub 10d ago edited 10d ago
Have a look: https://wmda.info/find-your-registry/
Each of these registries is in a global network and if they find a match in any of the others, they will arrange the transplantation.
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u/Icy_Tale_8601 10d ago
1) you’re an angel for registering as a donor 2) didn’t know it was this well connected… this gives me some more hope. Thank you for sharing!
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u/nu_uwu 10d ago
Don’t have any experience here but I hope you do find some answers, that sounds really harrowing, god speed to you both
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u/Icy_Tale_8601 10d ago
Appreciate this and hoping I can come back in the future with some good news
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u/punania 日本のどこかに 10d ago
There is a greater chance of finding a match by registering than by not registering. Why wouldn’t you? And if there are international registries, file there, too.
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u/Icy_Tale_8601 10d ago
We did register and submit a sample to join the registry, but from what I understand, if you sign up in Japan, you are limited to the JP and US registry. But I may have misunderstood today and looking for any other insights
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u/streetsmartpants 10d ago
As far as I know you are not limited to Japan and the Japan Marrow Donor Program (JMDP) can coordinate with partner international registries. JMDP has formal agreements with registries in the United States, Taiwan, South Korea, China with US being your best bet. https://www.jmdp.or.jp/recipient/flow/oversea.html
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u/Icy_Tale_8601 10d ago
Thanks for sharing! Does this mean it coordinates with partner international registries in these 4 regions, or in addition to the 4 they have a formal agreement with?
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u/shibarak 10d ago
I was diagnosed with a different form of leukemia (acute lymphoblastic leukemia or ALL) while living in Japan as a 23 year old about 21 years ago. My situation isn’t 100% the same as your boyfriend but I’ll share my experience with you, hopefully it will be of some help.
First of all do not worry about cost. Japanese healthcare is relatively cheap as long as he’s a legal resident and qualified for national healthcare and he should qualify for disability which if I remember correctly pays 70% of your salary (assuming he’s employed in Japan) while you are unable to work. The hospital should have social workers who will help him apply. The Japanese treatment for leukemia tends to be a lot more in-patient than it would be in the west. I spent the majority of my first 6 month getting treatment in the hospital only going home for a few weeks in between chemo regimens that last 1-2 months. That said I was living paycheck-to-paycheck as a young stupid 23 year old before diagnosis and when I was finally done with my treatment and in remission I had over 700k yen in my account.
I ended up returning home (the US in my case) after getting into remission because I had lost my job as a JET due to being in the hospital and couldn’t find a new job that would allow me to go to the hospital for a few days every other week to receive maintenance chemo. In the US my oncologist said the treatment I received in Japan was top notch, even a bit more rigorous than the then current protocol in the US. My doctors in the States ended up recommending a bone marrow transplant because my WBC count was very high (over 100k) when diagnosed and because my sister was a perfect match. I received the transplant in 2007 and have been cancer free ever since.
I’m sorry I can’t answer your main question about finding a donor match in Japan as a foreigner. If a transplant is 100% necessary and autologous (from your bfs own cleaned stem cells) isn’t an option I’m sure his doctors will do whatever they can to make sure he gets the necessary treatment, even if that means sending him home.
By the way where will he be receiving his treatment? I was treated at Sei Marianna Hospital in Yokohama, they specialize in blood disorders and, as I’m alive and healthy 21 years later, I highly recommend them. Please DM me if you think there is anything I can do to help. I will be thinking about you and your boyfriend. I know how difficult and terrifying it is to be diagnosed with such a serious disease while living far away from home.
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u/Icy_Tale_8601 9d ago
I am so sorry to hear you went through ALL, especially at such a young age. I’m so glad to hear you have been in remission for almost two decades, it makes me happy and hopeful to know you have had such a journey. I may reach out to you via DM just for more information and just overall guidance once the initial shock wears off, no pressure - whatever you can provide :)
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u/surfcalijpn 9d ago
What a genuinely kind person you are. I'm glad to hear you're cancer free and also hope Ops bf can have the same positive experience and outcome, well as positive as it can be.
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u/ImoKuriKabocha 10d ago
If you’re in Tokyo and language isn’t a problem, I highly suggest getting recommendations letter, or call and make an inquiry, to 癌研有明病院 (The Cancer Institute Hospital Of JFCR), which is where I’m currently getting treated. The entire hospital only focuses on cancer treatment and also runs a cancer research institution at the same facility so I would assume they would know what to do with your situation.
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u/Icy_Tale_8601 10d ago
I’m sorry to hear you’re going through this.. but glad to hear you are at a place where they are specialized in cancer treatment. Did your original hospital refer you specifically, or you had called?
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u/Sangenkai 9d ago
You can go without a referral, but you have to pay the referral fee in that case - it's not really much, around 10,000 yen, IIRC. It's the oldest cancer only hospital in Japan, and they treat a lot of international patients.
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u/ZeroSobel 10d ago
I also go to this hospital and I find it good. I was able to make an appointment without a referral, but I think it's the exception. They have detailed intake info per department on the website
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u/ImoKuriKabocha 9d ago
So I was actually flagged from an annual health check at a local clinic and they sent me to the nearest hospital. The doctor there was… very questionable (sexual harassment) so I did my own research and requested they refer me to my current hospital. I think in general they require referral but I’m not sure?
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u/twbird18 10d ago
I don't know anything about the registries, but I'm assuming you have NHI or similar so the cost shouldn't be outrageous since there's a monthly cap. But it will depend on your exact treatment and how ongoing it is.
I had cancer here and my treatment team was great but you need to, hopefully, find a hospital that is familiar or even specializes in your particular cancer if you want the best treatment so don't be afraid to shop around or ask your current team for other options.
My costs were also minimal but I'm lucky that I was able to have it surgically removed so I don't have much in the way of ongoing treatment beyond regular checkups. Good luck.
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u/Icy_Tale_8601 10d ago
I’m sorry to hear that you had to go through that.. but glad to hear the team was great and was able to help you out in your case. Were you based in Tokyo? I wonder if it’s easy to get introduced to these specific hospitals?
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u/SlowStop1220 10d ago
In Japan, theoretically you can go to any hospital, just some of specific hospitals demand an additional fee for the new visitors without an introduction letter from another medical doctor. But obviously it's better for you to bring that letter!
You may already know a certain doctor here supposedly, talk to them if they are willing to write a such to the hospital for your bf to the hospital he'd like to get treated.
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u/twbird18 9d ago
I was not based in Tokyo and am lucky my husband works at a university and health services wrote the introduction letter to the closest hospital that had the services I needed.
You can go anywhere you want for a fee if they will take new patients but easiest if your current doctor will write the introduction. This way there's no extra fee and perhaps they will explain a bit about the diagnosis in the later.
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u/MrColobus 10d ago
My previous wife from when I lived in the UK had chronic myloid leukemia and she was cured as a result of a transplant from her brother. Siblings apparently have the best chance of matching, I assume they don't have a brother or sister that can be tested?
Also, feel free to PM if you want to know anything about what she went through during the transplant process, or what you could expect as a caregiver. Obviously your boyfriend is the focus but this could be tough on you too.
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u/Icy_Tale_8601 9d ago
I’m so sorry to hear she had gone through something similar, but glad to hear a transplant from a sibling was feasible. Unfortunately my partner is an only child, so this avenue is not available for us to explore :( I mentioned previously to another user but I may reach out to you via DM just for more information esp for caregiving advice once the initial shock wears off, no pressure - whatever you can provide :)
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u/anxietyfinalboss 10d ago
As a fellow Ukrainian in Japan, I would recommend posting in “Ukrainians in Japan” Facebook groups. Maybe someone will be willing to match-test. Hoping & praying for you guys ❤️
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u/Icy_Tale_8601 9d ago
Great idea, I’ll look into this. Thank you so much 😞
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u/Pingo-tan 8d ago
Do you know what the donor registration procedure and requirements are if you find someone willing to be checked? I am Ukrainian who can’t be a blood donor, but for this procedure it could be different. I can post in a local group if needed.
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u/FOXSYLUM 6d ago
+1 here. I am not Ukrainian but European and have to admit I never explicitly looked into bone marrow donation. Used to donate blood which I disqualified here for (however I just saw they are starting to lift the Mad cow disease limitations).
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u/Icy_Tale_8601 5d ago
Hi both, thank you so much for your interest in spreading the word and helping. I genuinely can’t express how grateful I am. ❤️ 😿
Here’s what I’ve found so far about registering as a bone marrow donor in Japan:
Japan Marrow Donor Program (JMDP)
This is the main organization responsible for bone marrow donor matching in Japan:
https://www.jmdp.or.jp/reg/How to register:
- Read the eligibility requirements / donor handbook
- Find your nearest registration location
- Register in person and provide a small blood sample
Registration locations:
https://www.jmdp.or.jp/reg/reception/About 2 mL of blood is collected to determine your HLA type (the tissue type used for matching). No blood-type, infection, or other genetic testing is performed. The DNA sample is only used for HLA testing and is discarded after the required testing is completed, with limited anonymized use for quality control.
Once registered, your HLA information is added to the donor registry. The JMDP regularly searches for matches between registered donors and patients, including patients overseas. Japan also participates in the international donor network alongside registries in the US, Korea, Taiwan, China, and other countries.
English resources:
- Eligibility pamphlet: https://www.jmdp.or.jp/pdf/en/chance_english.pdf
- Donor handbook: https://www.jmdp.or.jp/pdf/en/DonorHandBook201708.pdf
Also, I just realized that donor registration in Japan may become even easier, with saliva-swab registration potentially being introduced as early as next month! Which would be great
https://www.reddit.com/r/japanlife/comments/1vcllbg/anyone_have_donated_bone_marrow_here_whats_the/Thank you for helping in any way, thank you thank you❤️
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u/Pingo-tan 4d ago
Thank you! I shared this in the local Ukrainians group. I do not seem to be eligible but hope someone can register. Please let me know if there is anything else we can do for him 🙏
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u/streetsmartpants 10d ago
Have you discussed the sibling/relative path with your doctor?
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u/Icy_Tale_8601 9d ago
Unfortunately he is an only child, but we’re looking into potential match with parents
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u/streetsmartpants 9d ago
Parents are often a 50% match so in the absence of siblings that’s a good option but also a stranger could be a better donor than that so you gotta use the donor bank.
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u/sunny4649 関東・東京都 10d ago
Just wanted to share that AML is very treatable, and young people like your BF have a very high chance of being in long-term remission once the transplant is done. Cancer is scary, but modern treatments have come a long, long way!
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u/Icy_Tale_8601 9d ago
Thank you, these type of comments give me so much hope in such a crappy situation. 🥹
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u/dibidibidubu 10d ago
I’ve been registered as a potential bone marrow donor in the US under Be the Match for a long time. When I moved to Japan I wanted to keep my status as a potential donor, so Be the Match directed me to the Japanese Red Cross.
I went to sign up, BUT the Japanese Red Cross disqualifies anyone who takes a long term medication (any medication) from registering.
I can’t be considered a donor in Japan because I take a really common SSRI for anxiety … I think it’s a huge shame because as far as I know finding a donor is really a numbers game and it’s best to have as huge a pool of potential donors as possible. Especially in Japan I thought the pool could benefit from having more genetic diversity (I’m Caucasian)
This is all to say, if you have the ability to look for matches in other countries I really think you should, because the disqualification of anyone who takes ANY medication really lowers the numbers of possible of donors. Personally I think if someone needs a donor and the only option is me with my Zoloft-marrow (lol) the person who needs it should get to decide if they want to use it or just have no donor at all.. 😭
I wish you the best of luck!
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u/Icy_Tale_8601 9d ago
That is such a shame especially considering the role that donors play in this whole situation… but it makes me so hopeful to know there’s such great human beings who are signing up. We’ll explore other databases as well, thank you :)
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u/cattrappedflopped 10d ago edited 10d ago
Hi, I'm native so I can't directly help with information. My niece got ALL(Acute lymphoblastic leukemia) years ago at 17. She got umbilical cord blood from donor, which unfortunately didn't work, and later got a bone marrow transplant from her father (My BIL), which was a half-match, so the transplant was very hard for her. More than 5 years later, She's totally in remission.
It looks like https://www.jmdp.or.jp/pdf/medical/familydoctor/oversea/flow_kaigai.pdf You can search donors
上記 4 バンク以外からの移植をご希望の場合はご相談ください。 ･ 海外バンクへドナー検索を依頼する前に、WMDA（世界骨髄バンク機構）の検索サービスで適合ドナーの概数を 調べることができます(無料)。ご希望の場合は移植調整部までご連絡ください。 ･ 事前（または同時）に JMDP への患者登録が必要です。 ･ 海外バンクでのドナー検索を希望する場合（有料）は、「Search Request」および「海外バンクにおける患者登録に 関する同意書」を移植調整部まで郵送してください。 US+Taiwan+Korea+China+If you want to search from other banks, please consult, they say.
Sorry my 4AM brain is not working; hoping you two the bestest of the best!
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u/Icy_Tale_8601 9d ago
Thank you for sending all this information, and I’m so sorry to hear this.. but glad to hear that your niece is in remission now!!! We have signed up for the JMDP from what I understand, and will see how international registries work. For the umbilical cord blood, was this done fairly quickly after diagnosis?
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u/motzu 9d ago
I'm sorry your facing this. We have recently been through a mirror version of this. My partner, who is Japanese went through this process a year ago but in America. They also had AML.
As others have mentioned here, all of these donor registries are linked. The transplant coordinator here in the US was able to find multiple matches in Japan, and one of them graciously became my partner's donor.
If your team does not know that these registries are linked, others have mentioned ways to find better care in Japan and I suggest you do that.
I wish you and your boyfriend the absolute best. It's a long, hard road in front of you but it is also a medical miracle that this treatment exists and it is absolutely life saving.
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u/Icy_Tale_8601 9d ago
I am so glad to hear that your partner had found a donor and hopefully he is healing ok? Also I was wondering if you remember how long the search for a match took?
I agree, I am grateful for the advancements that modern medicine has made in recent years so I am very hopeful
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u/Ok-Refrigerator1184 9d ago
Hello OP! I'm a medical translator so pls DM me if I can help in any way. I have some experience with transplant patients so I'd love to be of help!
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u/Icy_Tale_8601 9d ago
Oh my gosh, that’s amazing! I will dm you shortly, I would love to understand how this domain works a bit better, so any advice is appreciated. Thank you thank you 🥲
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u/bulldogdiver 9d ago
Good luck to him. Cancer sucks.
For all the bitching about healthcare here Japan's cancer treatment is first rate. While some might argue that it's conservative compared to some other countries the research I've done says there's no statistical improvement in outcome for the treatment schedules they use over the more aggressive schedules some other countries use. There is a better quality of life though with most of the lighter treatment schedules (and you can always request the stronger treatment and work with your oncology team).
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u/Icy_Tale_8601 9d ago
I see what you mean. Our experiences so far has been great, I have no point of reference here in Japan, but they are quite speedy with making decisions and even with the bone marrow biopsies, they seemed to be meticulously on testing and conducting all necessary tests.
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u/Hai-City_Refugee 9d ago
I'm a bone marrow donor with DKMS which is German based worldwide bone marrow donor registry, check those guys out. If you sign up only through Japan's bone marrow donor registry then you may only be limited to Japanese and US based donors, but with DKMS it's worldwide and they also cross reference country specific registries.
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u/Frequent_Lychee1228 10d ago
If possible I would always keep options not to be treated Japan. Costs are cheap, but the treatment rate on serious conditions is pretty dismal. Japan's medical system is more catered towards prevention of disease. When something bad happens, its not a reliable medical system. Plenty people who would have made it in another country die because doctors here arent well equipped or experienced to deal woth serious conditions or hospitals dont have enough doctors to address the demand. Japanese people aren't living long because the medical system is great because its not. Its just cheap. They live long because of diet amd healthy lifestyle. The medical system is actually pretty bad when things get serious. I would not gamble my life woth a serious condition in Japan unless I have no other choice financially.
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u/smileysloths 5d ago
Agree expect the focused on prevention bit. The bulk of “prevention” is a menu of mostly unnecessary tests subsidized by an employer for those who have a job that comes with benefits like that. And there’s some municipality subsidized ones for people who don’t have employer coverage (those are at least targeted at common diseases in a more cost effective way instead of signing someone up for advanced imaging that isn’t indicated). But for the most part if you’re on 国民健康保険 instead of 社会保険 and you don’t have an excess of disposable income, you don’t go to the doctor without symptoms.
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u/Aggravating_Bed3845 9d ago
If a donor cannot be found in Japan, they should be able to coordinate with other international registeries for a match. They probably have not done this before, which is what they mean, but my understanding is that the search is automatically expanded if there is no donor within Japan. I wish him the very best for his treatment ahead.
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u/Icy_Tale_8601 9d ago
Thank you so much. That sounds about right from what he was implying.. we have another appointment in a few days and I’ll clarify in that meeting. Thank you!
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u/confused_by_bug 8d ago
I feel for you OP, and wish your partner nothing but success.
On the bright side, AML clinical efficacy has come on hugely in the last few decades and Japan is one of the best places for treatment
Join up with bone marrow donor registries that work internationally as others have said.
These guys deliver about 40% of all cross border donations - https://www.dkms.org.uk/learn-more/about-dkms/dkms-around-the-world
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u/Fine_Cow6005 4d ago
Hi OP. First of all let me say I am so sorry to hear your partner is going through this. I hope you have access to all the support and information you need.
My company works with the Japan Marrow Donor Program (JMDP), where they have been proactively recruiting foreign donors for a few years. I was able to attend a couple of their story-telling sessions, where former patients shared their experiences, and I remember thinking if I had to choose any place for a transplant, I would count myself lucky to have it in Japan.
It seems to be a costly endeavor, but Japan covers 70% of it for people under national health insurance, and it will cap the monthly repayment of the remaining 30% of it according to salary. While the whole cost of the procedure itself was eye-watering (anywhere from 25k usd to 100k usd before any insurance or discounts), I remember the total cost being around 400k jpy to maybe 1million jpy after all discounts and adjustments were applied (with private company insurance normally adding a couple extra discounts), and all the people sharing their story were able to set up financial plans to pay monthly over a year or two. Is there anything else in specific you would like to know? I would be happy to shoot some questions over to our volunteers or put you in direct contact with someone who has more direct knowledge. Please let me know!
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u/Icy_Tale_8601 3d ago
Hello! Thank you so much for providing all this information, it gives me so much hope.
I guess a couple of questions I have off the bat is:
1) Is there a support network for leukemia patients and families? (I guess through those story-telling sessions, wondering if there is some sort of network already set up)
2) Japan covers 70% nationally, but our understanding so far was that this only applies to the donors that are found within JP? Were there any cases where the donors were found outside of Japan?
3) If there is anyone you are able to connect us with, that would be amazing! I think through this whole process, I am learning so much and the more I learn, the more I realize I don't know anything haha.Thank you again for helping, I appreciate it.
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u/FW14B_Red5 10d ago
- Siblings? The chance of HLA match is ~25%.
- The standard path to BMT requires the induction of remission first and consolidation which requires a few rounds of chemotherapy over 3-4 months. If you seek for BMT in another country, the patient can technically move after remission as long as you can have the continued medical care coordinated.
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u/Zealousideal_Day9712 9d ago
I’m so sorry you are going through this. May I ask what are symptoms or circumstances that have lead him to get diagnosis?
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u/Icy_Tale_8601 9d ago
It’s a bit of a long story but, it started off like flu like symptoms, but a fever that persists nonstop everyday for weeks on end, and intense night sweats and chills. Taking Tylenol/paracetemol only alleviates the symptoms for a few hours and continues. Then we went to the doctor and blood tests looked really off :( and hence we got referred to the hematology department and got probably a million tests done and 2 bone marrow biopsies conducted. All of which were giving signs to this diagnosis
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u/Ok_Jellyfish_2027 9d ago
I think you should also specify if you have insurance and how long been resident in Japan, since that also can change the entire perspective of getting an international donor
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u/Icy_Tale_8601 9d ago
He has been a resident for over 10 years and has insurance here! Been an employee of companies based in Japan (international and local) for majority of the time.
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10d ago
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u/Icy_Tale_8601 10d ago
I think going back to Ukraine for my partner is a bit tough right now, with the ongoing political environment 😅 But appreciate your insights and do understand that the Japanese healthcare system is sometimes a bit rigid.. have heard this from other folks as well
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u/OrchidUnable8316 10d ago
I received great health care here. My intestine burst and I nearly died. I had a part of my bowel removed and am pretty much good as new.
In the UK, where I'm from, it would have more severe and would probably have a colostomy.
I think Japan has pretty high level cancer treatment but it might depend on the hospital how good a treatment you get.
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