We had it confirmed today that my husband’s Myelodysplastic syndrome (MDS) is in the Very High Risk category, rather thsn High Risk. His lifestyle has been curtailed by the effects of the disease and the treatment and he is not a candidate for stem cell or bone marrow transplant. Looking at the information from Blood Cancer UK / Myelodysplastic syndrome (MDS) Support Group UK / Bloodwise, it seems that our time could be limited.
Anybody out there with some positive stories for us??
(Reading this back, I realise it sounds like I’m being very negative, I’m usually a very positive person, but today has been a bit of a difficult one!)
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@SueD you certainly did not sound negative, you just said it how it seems for you.
I have not got Myelodysplastic syndrome (MDS).
I hope that your husband has a medical person that he can talk to and ask the way forward so that you both know what is going on. All questions are so valid and if he wants to know his prognosis it is fine to ask.
We are always here to support you both as is the Blood Cancer UK support line.
Be kind to yourselves
Please keep posting.
I hope someone will be able to help you.
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Hi @SueD. You do t sound negative at all. It’s only natural to feel what you are feeling.
What have the medical team said about what happens next. Have they been able to talk things through with you?
As @Erica said, the support line is there if you need it X
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Thank you @Erica and @Nichola75.
I do appreciate your replies.
We are in the strange position of being between consultants. We were due to see the Consultant face to face at the beginning of the month but that appointment was cancelled, we thought, due to Covid issues. However, it seems he has left and a replacement will not be in place until April… Thankfully, my husband attends for chemo seven days a month and so is seen by nurse practitioners regularly.
We raised some concerns and the Senior Advanced Nurse Practitioner has reviewed things with us and there is a short term plan in place until the new Consultant is in place.
We have a great deal of confidence in this nurse (in fact the whole team of nurses)but the last time we actually spoke to a Consultant he was clear that the outlook wasn’t great and wanted a formal review after this current cycle of chemo.
It all felt a bit much on Monday, hence my post, but just getting it all out of my system by posting here has helped!
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Great that you have a good team of nurses. Sometimes all we need to do is get it all out and share how we are feeling. It helps me so much to do that! X
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Hi @SueD yes, my medical team have come and gone too, two steps forward and one back.
However my team of nurses, although they have come and gone, I find are much more approachable and I find will answer all my questions in a practical way.
I find writing on here really helps me getting things off my chest so please keep posting
Look after yourselves.
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I’d ask your dr. to refer you for a second opinion. Even if it means by zoom if too far to travel. Anther haemotologists opinion could help you. He/she may know of the latest successful treatments that have been clinically trialled
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Thank you, I think you’re right.
We’ve a GP appointment next week so we’ll discuss it with him then. 
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Hi @Mawdsley22 a great big welcome and you have already shown a value of our forum by offering a handy hint.
I look forward to hearing more about you soon
Look after yourself
Hello and welcome to the forum. A second opinion is a good idea and can often put your mind at rest. How are things with you? 
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Dear @SueD, thank you for posting and I do hope that you are benefiting from the support of the Forum? It must be such a difficult time for you and your husband. I am really glad to hear that the Nursing team is supporting you well whilst you wait to see the new Consultant. It is a very long time wait so I would urge you to keep talking to Advanced Nurse Practioner if you have any worries or questions. I would agree that the best assessment of your husband’s disease will be following the cycles of Azacitidine (I presumed it was this from your message) as it is a ‘slow burner’ in treatment terms and could well improve the disease after a number of cycles. Your Consultant can use this information along with the risk status to give you a more reliable outlook. If you would like to talk things through please do call or email the Support Services Team How to contact Blood Cancer UK | Blood Cancer UK. Kind regards Gemma
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