My husband was just diagnosed with Myelodysplastic Syndromes

My husband was diagnosed with multiple myeloma November 2021.

We have both been hoping he would be one of the lucky ones that lives 20+ years so it was easy to push it to the back of our mind.

Through blood tests for myeloma it was found that he was rapidly loosing platelets. He has had two transfusions whilst waiting for  bone marrow biopsy results.

He seems to drop to below ten every two weeks.

We are still in shock even though I think we were both fearing the worse. I just don't want to face up to the truth that he will probably die within 2 years.  Some people live for 5 or more with MDS.

Because he has had a bone marrow transplant/ stem cell replacement and chemotherapy along with the sudden onset of the huge drop in platelets it is not looking good.

Has anyone here been in this position or currently in this position?

My husband is not good at sharing his worries and I need someone to talk to. He is very tired and snappy which is not surprising.

He is only 64 (65 in September) and has started saying that he better get to 66 so he can get his pension before he dies..

I want to be positive but I also want us to be able to be honest about what is happening

My mum died at 51 from leukemia and I never discussed it with her because I didn't want to talk about it in case she gave up fighting or she got upset by me crying in front of her.

I want to be more open with my husband but I think denial is easier for him.

  • Welcome to the Cancer Chat forum Notmyfullname, although I'm sorry to hear your husband has recently been diagnosed with myelodysplastic syndromes (MDS).

    This must be such a difficult time for you both, but our community are here for you, and I'm sure it won't be long until some of our members stop by to share their experiences and advice.

    Taking care of yourself and being able to talk to someone about all of this is very important, so if you'd like to have a chat with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to support you at this time. 

    I'm not sure from your post if you are already in touch with these cancer charities, but reaching out to Maggie's and Blood Cancer UK will provide your with more opportunities to meet and connect with others who are also on this journey. 

    Do keep posting if you find it helps Notmyfullname as there will always be someone here who will know what you are going through.

    Kind regards,

    Steph, Cancer Chat Moderator