Living with MDS (Myelodyplastic Syndromes)

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

My husband is just two years post transplant. He saw hematologist on a Tuesday and started chemotherapy on Thursday. His bone marrow biopsy had 19 blast and I guess 20 is leukemia so yes rapid treatment.

My husband is just two years post transplant. He saw hematologist on a Tuesday and started chemotherapy on Thursday. His bone marrow biopsy had 19 blast and I guess 20 is leukemia so yes rapid treatment.

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.

Sorry to scare you Lori. No all things are good on the cancer journey. I just wanted Cindy to know how fast things can move when the doctors are worried. Lori you have been my rock through so much of that whole process.

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

Just reading post. I am so glad to find this ! We have no idea what to expect
John’s doctor needed call mds cancer and he called chemo just getting an injection. I think he doesn’t want to scare us. The literature was the eye opener

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?