Living with MDS

My husband was diagnosed with MDS about 8 months ago. Just had another biopsy to make sure it’s stable, the biopsy was basically tainted with blood, so gave us no answers. We met with a transplant team, dr said right now he is stable it’s a wait and see thing but we have pretty much decided we won’t do the transplant after hearing the details. I have to be honest, I’m scared. I’m fixing him protein shakes and have him on Papaya extract and Vit B5. It raised his platelets 14,000.

Welcome to Connect, @smetzing I can surely understand the anxiety you and your husband are experiencing with his diagnosis of myelodyplastic syndrome. This condition in the bone marrow doesn’t allow for healthy blood cells to form. While it can take a while to develop and sometimes people have it for years, it bears watching.

There are different types of this bone marrow disease. In your husband’s case, if there is already a discussion about a bone marrow/stem cell transplant then he may have a type that may not be as treatable long term with medications.
A bone marrow transplant is the only known ‘potential’ cure at this time.

If your husband’s MDS progresses it may be suggested that he goes ahead with the transplant. I don’t want you two to live in fear of this! You’re right, the transplant isn’t a walk on the beach! But the ability to continue walking on the beach for many years to come after the transplant makes it all worthwhile! I would not be here to talk to you today if I hadn’t received a transplant over 4 years ago. Here’s a snapshot of life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

Getting healthy bone marrow cells from an unrelated donor was a gift of a second chance at life for me! Keep in mind that most of the time people only write in about the bad experiences they have. There are thousands of people annually who have bone marrow transplants who are doing fabulously! You seldom hear those stories. I’m one of them and that’s why I’m here to share the positive side of a bone marrow transplant. There here are several more of us in the forum who have had BMTs for various reasons and doing really well! It’s not all doom and gloom.

So if it comes to that, and there are no other options for your husband, please consider long and hard before you both decide no. ☺️

One thing to keep in mind is to make sure the clinic where he has the transplant has a very active, successful transplant department and does followups for a lifetime. I’m a patient of Mayo Clinic and was told that we were ‘married for life’ with my treatment. So even at 4 + years out, I still see my doctor semi-annually, have regular blood work (local labs) with the results sent to my transplant team. It’s vital to stay in contact with them so if there are any issues you are not left wondering how to get help.

Here are a couple of my go-to articles about MDS just for more helpful information:
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548

Is your husband going to be having another biopsy considering the previous wasn’t viable?

@lorieafoote, for some people hearing that your treatment option is "watch and wait" can be unnerving. I prefer to call it active surveillance so it doesn't seem like passively waiting for the other shoe to drop.

How are you handling the watch and wait status? Do the vitamin b12 shots help your symptoms?

Been on watch and wait for over 5 years. Vitamin b-12 shots help for only afew days then I am back to dragging myself into getting my things done.just went to my oncologist office had a argument with him that he did a blood transfusion on me.after looking at my records he got a pissie attitude with me. Said I am low risk.I made a appointment with my primary and he put me on high protein diet,says I am close to being a anemic. So frustrated with this MDS and my oncologist.

Hi @julie212, in addition to this discussion about MDS, you may also be interested in joining these discussions related to POEMS:
- Husband with POEMS Syndrome
https://connect.mayoclinic.org/discussion/husband-with-poems-syndrome/
- Has anyone been diagnosed with POEMS syndrome?
https://connect.mayoclinic.org/discussion/have-anyone-been-diagnosed-with-poems-syndrome/

How is your husband doing? How are you doing?

Hi @smetzing I’m wondering how your husband is doing. Was there any mention of having another bone marrow biopsy done after this last one wasn’t usable?
I was also wondering if you’ve seen this reply about having a bone marrow transplant for your husband’s MDS?
I would hope he’d reconsider his reluctance towards a transplant should it be necessary.

My husband has been seen by an oncology since 2017 where they had been watching his white counts and then in 2022 they dropped very low and found out about the MDS. While working with the new bone marrow specialists only then did we find out the he had MGUS all those years. I have mixed feeling if I would have wanted to know or not but today after being treated for almost a year and 7 + months post transplant now I wish I did know. I think we would have treated live differently. Done more traveling and maybe he would have retired sooner instead of forced retirement. Not sure. But to late for that but please if you get a chance to do a transplant do it. We have seen our grandkids grow even if by FaceTime a lot and no he has had a long roller coaster ride but at least he has had it.

My husband was diagnosed a year ago and has had many blood transfusions because of his low hemoglobin and sometimes platelet transfusions. He is 73. He is currently on Azacyadine treatment and has had 4 treatments. Not much success so far. How old is your husband?

Kathy T

Kathy, He is 69 soon 70 in Dec. Yes after the transplant he had several blood transfusions and received a lot of platelets as well. Then once the transplant engraftment things leveled off and not as many infusions.

Did you go to the Mayo Clinic for the procedure? I’m thinking if he could have the bmt it would be at a local hospital (Providence RI). I’m not sure why his hematologist hasn’t mentioned it as an option. Did you actively pursue it or did his doctor recommend it? I appreciate your input.