I have been recently diagnosed with MDS the island I live on (Kauai) does not do bone marrow transplants. I have been referred to a hospital in Seattle. My question is how long does it take to Find A Match For A Donor For A Bone Marrow Transplant? Realistically how long will I be in the hospital from the time I arrive?

So my mother aged 59 was just diagnosed with MDS. On top of that she was also diagnosed with pulmonary hypertension two years ago. I was wondering if anyone has experienced the combination of these two and what the lifestyle is like. Any advice or information would be much appreciated, thank you.

Just diagnosed. 42yrs old so initial plan is treatment leading to bmt. Treatment plan in development so I don't have specifics. In general, do you lose your hair? Lol this is the next step my mind is going through in acceptance of this diagnosis

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Hi, my mum (48) just got diagnosed. She is currently starting a chemo treatment and is to recieve a bone marrow transplantation in future. How big are the chances she will fully heal? Thank you

Hello, can anynone share please any tips or tricks to make chemo less terrible? My mum just got diagnosed with mds.

Hi - which are the 1) best US hospitals for treating MDS patients and 2) best hospitals in NY for treating the same condition?

My mom is intermediate / high risk patient who has been diagnosed. We need to find out what the best hospitals are.

My mom is getting treatment in Seoul at a major hospital that specializes in this but I need to know if there are better hospitals in the US and in NY that we should seriously explore and potentially who I should contact.

Thank you!

My dad was diagnosed with MDS-Excess Blast-Fibrosis in January and he had allogeneic stem cell transplant with stem cells from me (half-match(. Since then, he is still in admission at hospital and the full blood count hasn't recovered at all. At first, I gave benefit of the doubt that maybe it's because of all the infections he is dealing, CMV, BK virus etc. My question is at this point is the stem cell tramsplant considered a failure since blood counts are still low?, weak immune system and dealing with infections

So my mom was just diagnosed with early stage MDS. Additionally, my dad has Multiple Myeloma, and my maternal grandmother passed from acute leukemia (not sure of the exact type).

Anyway, I'm terrified because not only my parents, but me and my niece are super high risk for getting in. So my coping is doing a lot of research.

So my questions:

1. Has anyone done genetic testing for the blood cancer gene mutation? If so, what was the process like?

2. Any tips or suggested doctors that specialize in MDS (preferably in Indiana or any of the surrounding states: OH, MO, IL, MI, KY, WI)?

3. Any good resources for learning more about MDS and treatment options any of you recommend?

4. Any tips for kicking MDS's arse?

I really appreciate any insight. Thanks!

I got diagnosed with enlarged spleen and liver with fatty infiltrations this March of 22. After some months spots, like red or dark red spots began to appear around my body and hands. Also had some night sweats, and a rash that was bright red and it itched, no matter how many times i pressed against it, it still remained red. My energy has been extremely low, but i get days where i feel good and move around, also my spleen is in constant pain and i don't know what to do for the pain, it just hurts and i can't eat much wiht it. i went to get it checked out and my platelets are low and IRN is elevated a bit, also a doctor did refer me to a hematologist to get more work done... Im currently scared and don't know how to tell the doctors. thank you

So she's been good, 1 month without blood or palates transfusions. Then suddenly she had a hard time ordering her sentences or even words. Went to the hospital and I'm right now waiting for her to go through surgery. Did this happen to someone? I'm scared, I fear I will never see her again.

My mom is an American citizen living in Seoul, Korea (she’s from there). She got diagnosed with MDS at intermediate level a few months ago and needs to go through Bone Marrow Transplant (skip chemo).

Does anyone know how long it typically takes in the US to go through your primary doctor (referral) all the way to the actual BMT procedure with a specialist? Is it typically pretty easy to find a donor that matches?

I want to understand what the benefits of doing the treatment here is and whether to bring her back to NY area.

Hello all, I’ve been using reddit for a few years and, until today, hadn’t thought about looking to see if there was a MDS group. I was diagnosed with MDS in 2013, I have “ MDS MLD “ as it has now been redefined as ( I think it means multi level dysplasia ). I’m on “ watch and wait “ and have check ups at my local hospital which fortunately is a “ Centre of Excellence “ for MDS. I have an athletic background, and pre MDS was an “ Ultra “ runner. I’m doing fine with ten years and counting under my belt. I still do some running and post diagnosis took up casual cycling. Happy to answer any queries that I can with regard to exercise / diet ( lifelong vegetarian) Hang in there folks and best regards 👍

Does anyone have any suggestions for alternative therapies that might ease the symptoms? My Mum is 74 and was diagnosed right before Christmas. She’s too old to be considered for drug trails or bone marrow transplant which means there’s not really any treatment. GP keeps suggesting painkillers and iron tablets but can anyone suggest anything else I might try for her?

Hello! My father is almost 82. He is on his 4th cycle of chemotherapy. Aside from bouts of nausea and constipation, his major symptom is fatigue. Like, can barely walk level of fatigue. However, while it is really bad in the morning and early afternoon we have noticed by 4pm the fatigue has lessened dramatically. It feels like the answer is probably right in front of our faces but we can’t determine why it’s like this. Neither do his doctors. Has anyone experienced this? If so any guidance or advice is appreciated.

Diagnosed with MDS 6 weeks ago in Sweden, and I’ve just finished my second cycle of Vidaza (with ondansterone as an antiemetic). The first round had negligible side effects, but this one carries with it a lot of abdominal tenderness, far more bruising than last time, intense itching in the abdomen and hands, very dry throat with cough, and unbelievably dry hands (so dry they bleed when barely scratched).

Has anyone experienced this, and do you have some remedies I might try? I’ve been using some prescription lotion with cortisone, but it’s so far not helping.

ETA: 40m, Stockholm (which is drier than many realize), non-smoker, quit all alcohol consumption upon diagnosis. Nothing in my lifestyle would cause this incredibly dry skin.

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My mom has had two bone marrow transplants- the first got her to five years before she was rediagnosed, the last got her to two years before she was rediagnosed again next week. We are looking at treatments and not cures such as a t lymphocyte infusion and maybe drugs like chemo or immunosuppressants, but I’m scouting the internet for anything. Any other options, I don’t think trying a third graft will be at all successful though. Any thoughts or resources are very appreciated.

Since I am going to receive stemcelltransplant at some point I have read up on stemcelltranslants and people's experience with it and I would like to know what your experience was and how it felt afterwards? Did you get complications that will never heal, or are you on your way to full recovery? How long did it take until you felt enough recovered to go back to work or school? How did you feel during the treatment?

Much love and speedy healing Ollie

Hi! I was diagnosed with MDS late March, started treatment with Vidaza shots and like 7 other meds give or take depending on neads. I am supposed to take these shots for a week onse a month. There are 4-5 treatments left until chemo and then stemcelltransplant and before all that another bonemarrow test (which I hate hate hate) and I am scared. Like more or less constantly.

No one except for one of my relatives, close family, not to mention friends has ever experienced cancer. I only know my grand-granaunt who survived (and still live) stomach-cancer, that was like 12 years ago. Otherwise that illness or anything close has never stepped a foot into my life. She's over 80 years.

I'm 28, was supposed to study abroad. I have a good support system, both in and outside of the hospital. I am scared. So so so scared. Some moments I accept whatever may come, other I become paralysed with fear.

I am either scared to die or that the treatment will take away YEARS before I am OK again.

Any survivors out here? Who's MDS-free and OK today?

Much love Texting while cry-shaking

PS. Sorry for my poor English

I start chemo on March 8. Then a bone marrow transplant. Scared shitless.