I joined this group back in October 2024 after being diagnosed with Myelodysplastic syndrome (MDS). Somehow the next day after I was diagnosed this forum popped up on my phone and have been a great help to me. I have now plucked up courage to write my first post. My story goes I’m a 55 year old man that has never had a days proper illness in my life. Back in April last year I got the gout in my big toe and after several weeks i was persuaded to go to the doctor who requested I have a blood test which was my first test in my life, the results of the blood test showed platelets of approximately 50, white blood count of below 2 and neuts of below 1. Thereafter I received a number of blood test each fortnight over the next 2 months and in September I had a BMB which resulted in me being diagnosed with Myelodysplastic syndrome (MDS) with low blasts, normal karyotype, ASXL 1 very low risk. I was given IPSS of 3.5 years and IPSS-M of 10.6 years. This has come as a total shock to myself and my wife of 35 years but we said we would take everything in our stride. On a visit to a hospital appointment in November I was told that they would either watch and wait or I may be considered for a Stem cell transplant. Things has gone on from there and I was informed before Christmas that there were 9 potential 100% matches for me on the doner list. The end of last month I went to the transplant hospital and had the discussion with the doctor which wasn’t very nice as I was told of all the risks which I was aware of because I read the 7 steps of transplant book. Last week I received a follow up letter which seeing everything in writing is very daunting to say the least. The letter did say that there is a 50% chance I may live for 3 years after the transplant which would then be considered a cure. Since I received the letter I have been in a daze and that’s why I decided to write on this forum as I know that there are a number of you in the same situation. I have been told that they would not consider a transplant until this summer at the earliest. I have no symptoms whatsoever at present and am fit for my age as I walk 5 mile 4 times a week. I know that I’m lucky to be considered for a transplant and even luckier that I have so many potential donors but it’s still daunting. As I have said I Just wanted to share my circumstances with you all on this forum as you have helped me so much up to now without me doing any posts. Thanks again n advance for taking the time to read my post.
Dear @Alec
Thank you for posting and sharing your story. Your experience will certainly resonate with many and I think it is so important to talk this through. I can tell you have done your research and truly listened to what the Transplant team team have said. There is so much to take in and having some time to think can be beneficial. As you said, you do have a treatment option with good donors available but this isn’t a simple decision so please do keep talking and I am sure you will get support on here.
If you should need to talk things through with us on the Support Line, please don’t hesitate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
Hi @Alec I am so glad that you have now plucked up the courage to post.
I have another blood cancer and I was actually 53 yrs old female when I was diagnosed and also been so, so healthy for over my first half century.
I am also a walker and think the fresh air is good too.
I know my diagnosis was a great big shock for me and it sounds as if it was for you and your wife
So you have had the ‘scary transplant risk talk’ but from what you say actually seeing it in black and white made it really daunting. I can understand that.
I hope others will be able to share their experiences with you.
I really look forward to hearing more about you and thanks for posting.
Really look after and be kind to yourselves
Hi @Alec Just wanted to send you my very best wishes & like you, have found this forum SO supportive. I’m supporting my husband ( 73 yrs ) who was diagnosed with Chronic myelomonocytic leukaemia (CMML) 3 months ago. What a rollercoaster 3 months it’s been. Like you, he’s suffered from gout too. His abnormal bloodwork was flagged up on a routine blood test, then BMB confirmed the diagnosis. We had discussion re Stem cell transplant but it was decided it was too risky due to his age. So we are now waiting for one more appt next month & he’ll probably start treatment after that. I wish you all the very best with your onward journey. Do keep us posted. Take care
Thank you very much for you kind words, I am on the outside prepared for a transplant but on the inside I am probably scared at the thought of it. What if I do and what if I don’t is going through my head all the time. I would just like to give it my best shot for my family. Onwards and upwards from here. My motto is - it’s better to be born lucky than rich, although I have been diagnosed with this disease I feel lucky it’s been caught at such an early stage. Thanks again
Thank you for you kind words and I hope your husband has a good outcome. It’s very daunting isn’t it and how the days and weeks go so fast.
Thank you for your reply, it means a lot to me. This forum has been a go to place when I’m on my own contemplating the future. It’s been so helpful and I hope it will continue that way. More about me is this has come as a total shock as I have never really had a days illness in my life and up to now that’s still the case. I have been married since I was 20 and my wife was 19, we have 2 lovely children and 7 grandchildren. Although I may be scared to go through the transplant I feel what if I do and what if I don’t. 3 years from now I may be cured if I do. I have a wonderful family and group of friends but on the outside i have always been the strong one. This forum is the place I can express my worries because I know there are a lot on here in the same situation. I hope to tell you more about my situation in the near future.