Hello there my name is Donna. Recently my husband had been diagnosed with Myelodysplastic syndrome (MDS) and he requires chemo and a transplant. We dont have a donor does anyine know what the process is. He has been told he is high risk. He has had the biopsy and 2 lots of blood tests and a tissue test so far. But we dont seem to be getting anywhere quick. It has been 13 week since his diagnisis and he is getting very tired. Anyone in the same place or has gone through this. A little chat and advice would be great. Thankyou
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Hi @Donna8370 Welcome to our forum.
Your caring and anxiety really comes from your post.
What I have realised is there is a lot of not knowing and waiting when we get diagnosed and during our treatments.
Some tests can take time to get the results from.
Has your husband got a specialist nurse contact that he might be able to contact or his medical team or at his next appointment and they will be able to talk him/you through the process of them finding a donor.
Others might be able to share their experiences with you.
Perhaps it might help him to write down all his fears, questions and practicalities first.
The main thing is that you both really look after yourselves.
Please do let us know how you are both getting on.
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Hello there. We have seen 2 different specialists and we do have numbers including an emergency out of hrs one incase he gets any temp or feels unwell. At the moment we have just been told there has been a referal put in for another hospital. That was 3 weeks ago now. We have wrote lots down and prepared for a long stay in hospital up in Newcastle is the nearest one to us which is quite a long journey. Thankyou for your swift reply and I hope there are others on here that could maybe in someway share their experiences so we have a clearer picture. Thankyou again.
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Dear @Donna8370
So sorry to hear that your husband has been diagnosed with Myelodysplastic syndrome (MDS), it must be such a shock for you both. We are very happy to support you on the phone line (0808 208 0888 option 1), via email: support@bloodcancer.org.uk or on the forum of course.
The process for finding donors will have already started as your husband’s Tissue Typing bloods have been taken. May I ask if he has any siblings? If so, have they been asked to be tested?
Our colleagues at Anthony Nolan have some great information about the process here: Finding a donor for your stem cell transplant | Anthony Nolan. We also have some information too that will hopefully help once the transplant is planned:
Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop
Has your husband started chemotherapy yet?
Here is our information on Myelodysplastic syndromes (MDS) | Blood Cancer UK, too. I am sure you have received lots of information already but always good to have plenty for reference.
I would also suggest talking to your husband’s Clinical Nurse Specialist about the treatment and potential stem cell transplant, they can talk you through how things are progressing.
As I mentioned we would be very happy to talk to you so please don’t hesitate to get in touch.
Best wishes
Gemma
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Hi there. Thankyou for your reply. Sadly ge lost his younger brother and his eldest brother has just finished chemotherapy himself so unable to help. He has not got a date for chemo or had any meeting with anyone at the designated hospital he has agreed to be admitted to. We have spoken to one consultant and sadly there was a language barrier and no one else to help or speak to us. We are just relying on Google to find out the next stages. ( which is wrong sometimes I know). Thankyou for the links I will take a look at them.
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I had a Stem Cell Transplant in December 2024 funnily enough probably in that same hospital,the Freeman,in Newcastle assuming your Newcastle is the one in England and not Australia ,South Africa,etc?!Mine was due to a different blood cancer,Mycosis Fungoides which is rare and one of the T Cell Lymphomas.As to the transplant they looked at my sister as a doner but she was a half match.So they used a Europe wide Stem Cell bank and the cells they got came from somebody in Germany.Other than ask relatives if they’d be willing to be tested you don’t need to worry about finding a doner as they do the looking.The cells themselves are put in through an infusion and it took about 40 minutes but you have quite a few other things like radiation ,chemotherapy,anti rejection drugs to consider too.
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Hi Donna, I’m so sorry to hear that you’re finding this all so confusing. I was diagnosed with Myelodysplastic syndrome (MDS) in Sept 2022 and initially placed on what is referred to as ‘watch and wait’. It took me weeks of research to find out exactly what this meant but basically it means waiting until the condition worsens before you can have treatment. Sounds crazy doesn’t it?!! My Myelodysplastic syndrome (MDS) was discovered after a completely unrelated blood test and I hadn’t shown any signs of being unwell in relation to this. For the next 2 years I had regular blood tests and a couple of bone marrow biopsies but still didn’t feel unwell. The biopsies will give you the true level and stage of the illness. Some people stay exactly the same for years without any major health problems but for some, like myself, the Myelodysplastic syndrome (MDS) progresses to Acute Myeloid Leukemia and this is where the treatment comes in. (And I STILL don’t feel unwell! It’s only my blood and marrow tests that tell me otherwise.) Donna, most of what I know about Myelodysplastic syndrome (MDS) and Acute myeloid leukaemia (AML) I have found through research and asking questions of the specialists. The Blood Cancer UK website is brilliant, especially for support from others who have experienced the same. Myelodysplastic syndrome (MDS) is pretty rare and most people won’t have heard of it. I don’t want to bombard you with info but am more than happy to answer any questions if I can. It can be SO darn confusing because it’s so unusual. You mustn’t be afraid to ask questions. Next time you have a specialist appt write the questions down and and ask if they mind you recording your appt. (Easy done with an app on your phone.) That way, you can go back over it as many times as you need to. I wrote down the important parts of the recording which helped me understand what it was all about. It’s very complicated! Don’t ever think that it isn’t or you’ll figure that you just don’t understand. Jeeez! I hope this makes some sort of sense! I’m going to stop now but I’m here if you need me. Whatever I can help you with. Best wishes to you and your husband. Much love, Sally x
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Hello there yes we have been referred to Newcastle Freeman UK. I want to Thankyou all for the advice and information you are giving me. It really is a great help. I will keep you updated once we get the appointment for Newcastle. X
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Hi Donna, I am 10 years in remission from Acute myeloid leukaemia (AML), and I was diagnosed last August with Myelodysplastic syndrome (MDS). I too require a transplant but as yet there are no matched donors. I have a high level of antibodies apparently due to previous pregnancies and blood transfusions which is making it more challenging to find a match.
I am currently well although tired, under the Christie hospital and Royal Stoke.
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Good Morning sarah. Iam so sorry to hear this I’m sending positive vibes and I hope you find a match very soon. THANKYOU for your reply I find this site so helpful and reveive information of what other suffers are going through as well as us. It is very hard getting an understanding of things as we don’t appear to have much communication from our haematology at our hospital. I wish everyone good luck x
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It’s a very good hospital and I frequently go to both of the main Newcastle ones, the Freeman and RVI,plus the James Cook in Middlesbrough.
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Hi there I was diagnosed last October with Myelodysplastic syndrome (MDS) & systemic mastocytosis which came as a huge shock as I had been fit & healthy.
I had intensive chemotherapy last November for the Myelodysplastic syndrome (MDS) and currently take Avapritinib for the mastocytosis.
I am hopefully going to transplant at the end of May from an anonymous donor in Switzerland.
Both my children are half matches but my antibodies are to strong due to two pregnancies I’ve been told.
My consultant has told me my oldest child is still plan B.
I’m terrified as I have been told I won’t see my children grow up without a transplant, but know it’s my only option.
The only advise I can give is stay positive, it’s hard but I truly believe it helps.
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Hi Kevan how did you find your treatment/transplant?
I’m due to have my transplant at the end of May.
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The transplant went well but too early to say if it has worked.I still have a small,at the moment!, plaque of Mycosis Fungoides.A plaque is what they call a small flatish tumour that is under 1 cm in elevation from the surrounding skin which is showing no sign of going by itself.On the plus side it’s growing very slowly.About a year ago I had a tumour grow on my shoulder to about the size of a tennis ball cut into in about 3 weeks.
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Hi @Nancy1 a great big welcome to our forum.
It seems as if a lot has happened to you since last October
The Blood Cancer UK nurse support line is there for you if you need them on 0808 2080 888 and please do keep posting how you are doing.
I also look forward to hearing more about you.
I hope you will be able to say how it really is for you.
Look after and be very kind to yourself.
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My oldest child and friends are walking the Yorkshire 3 Peaks in June for Blood Cancer UK and for me x
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Hi hope your transplant goes well. I have found your post reassuring as I too have high antibodies, my 2 daughters are both 50% match but can’t be used because of antibodies.
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Wow, @Nancy1 I am so impressed that your eldest child and friends are walking the Yorkshire 3 peaks in June for Blood Cancer UK and you.
Please do let us know how they get on.
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I’m overwhelmed how my children are dealing with everything, we are so proud of them. My daughter is doing it too but not sure she’ll manage it all!
Their all wearing red fancy dress 
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@Nancy1 - that is amazing! I’m not surprised that you are incredibly proud. What a wonderful way to show their support for you and others. I love that they are doing it in fancy dress too!
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