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Living with MDS

Blood Cancers & Disorders | Last Active: May 17 5:49am | Replies (68)

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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.

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Replies to "My husband was diagnosed with MDS about 8 months ago. Just had another biopsy to make..."

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:


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

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.