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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: Apr 18 2:35pm | Replies (147)Comment receiving replies
Hi! My husband was just dx Today with MDS.The ref matl we received is scary. It’s a neoplasm according to the sheets but his doc said it is pre leukemia. He is being referred to Mayo Clinic for registering for transplant if the chemo he will start on Monday doesn’t work. My husband thinks it isn’t chemo or cancer but all the literature we got says chemo and MDs is a neoplasm. So confused and scared. Any good news will be appreciated ty
Replies to "Hi! My husband was just dx Today with MDS.The ref matl we received is scary. It’s..."
Hi @cindyborch and welcome. To help you connect easily with other members who have experience with MDS, like @nbadry @rrivory @honeymae @katgob @snakebite @sherbs and many others, I moved your message to this existing discussion:
- Living with MDS (Myelodyplastic Syndromes) https://connect.mayoclinic.org/discussion/living-with-mds/
You'll also see several helpful posts from @loribmt like this one providing more guidance https://connect.mayoclinic.org/comment/925760/
Cindy, I know this is all so very scary and it seems like an overwhelming amount of stuff to learn about. And at the same time, your world just got upended. I get it. You're not alone.
Simply put, myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed or don't work properly. It sounds like your husband will need treatment at this stage. I'm glad that he is being referred to Mayo Clinic. You both will be in good hands there.
Hi Cindy, Have you had a chance to read through some of the information in the reply from @colleenyoung? I know there’s a lot to take in with a new diagnosis of MDS for your husband.
There are different subtypes of MDS, usually with specific genetic mutations which can be behind the changes in the bone marrow producing blood cells. Treatment options depend on the type of MDS.
From what you’ve mentioned, it appears your husband has a subtype that requires attention right away in getting his treatment started. He’s being referred to Mayo Clinic for a potential bone marrow transplant which tells me he has a little more aggressive form.
That doesn’t mean panic! In some types of MDS, chemo may work well. But long term remission, in some cases, can be helped with a bone marrow transplant (BMT) At this time it is the only potential cure for MDS.
There are several members in the forum who have gone through this process for MDS with wonderful results. @katgob and @jrwilli1 already shared their positive stories with you. I had a BMT almost 6 years go for AML. I’m in a durable remission and feeling as though nothing ever happened. So there are happy endings to these stories.
What can I do to help you and your husband?
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cindyborch,
Tomorrow for sure you will have great informative posts to ease your mind. Many of us here had MDS. I will say rarely do we have the same diagnosis, but treatments, feelings, and living through it is a lot alike. I just hit one year past transplant. MDS is not as scary, as it has not progressed to leukemia. More details will tell the story on his blood. As he had a Bone marrow biopsy? Mayo clinic would be a good place to connect to. As I said, many will post some possible stops to take at Mayo and above all else, know caregivers are supported here too.