← Return to Looking for experiences with the progression of MDS

Comment receiving replies

Hi Brenda,
You need to ask your hematologist if the kind of MDS you have is likely to transform into AML. You also need to ask him/her if your BMB included next generation sequencing. This is important because it tells you what gene mutations you have, and there are some new targeted treatments for specific mutations. Hypomethylating agents such as Azacitidine which they also use to treat AML can sometimes slow down the progression of MDS to AML, but you are right. The only potential cure is a transplant which is a very scary and risky thing. Does your husband really understand the emotional impact this is all having on you? When I was diagnosed in 2011, there was still a dispute even in the medical community about whether or not MDS was really even cancer. I was told it was a “blood disorder.” So, uh, why was I being referred to a hematologist at the Cancer Treatment Centre for a bone marrow biopsy? Even now I have to explain to some people in my life that I didn’t just get blood cancer last year when I got diagnosed with AML. I’ve had blood cancer for 13 years!!! Sorry. Back to you. Where are you located? There are several MDS Centres of Excellence in the US and a few in Canada. Is your hematologist a specialist in MDS? If he/she isn’t, I would suggest that you ask for a second opinion from a hematologist at the closest Centre of Excellence to you. It will be easy to find on Google. I know how difficult it is to live with all the uncertainty, and I am now attending a support group for cancer patients which I find very helpful. I would suggest that you look into that too. Take care.

Jump to this post

Replies to "Hi Brenda, You need to ask your hematologist if the kind of MDS you have is..."

Hope you are having a great day. I do have a copy of my BMB report that includes:
Bone Marrow Morphology
10-color flow cytometry
Could this show my gene mutation anywhere?
I am not very knowledgeable 🥴

My husband was diagnosed with MDS last October and same thing, was told it was a blood disorder that could develop into Leukemia. I was shocked when I read your comment and Googled it. Lo and behold it is true. Even when Jon was started on Azacyadine I didn’t know he had cancer. He will be starting Round 5 in a week and so far it is not working. His Hemoglobin count hovers around 8.3 and his Platelets around 27. His WBC is also low and as soon as he finishes an antibiotic, another UTI comes back. So he is receiving transfusions about every 2 weeks. His doctor has said he is not a good candidate for a BMT because of his age, 74, and other health problems. I follow these conversations and will be anxious to hear how you are doing.
Kathy T