Living with MDS

Kathy, I am so sorry I wrote a note and must have not hit post/ imagine that. We are fortunate enough to have two very qualified BMT hospitals in Indianapolis area so we have done all our care through one and we’re able to do transplant as an outpatient. Although after the first round of chemo he was hospitalized for 3 wks for his reaction and was told he probably wouldn’t be a good candidate. But but mr determination worked hard on PT and got himself ready. I’m not saying it hasn’t been a roller coaster of events but he is almost 8 months out and would probably do it again. He had a bout of graph vs host and now presently in hospital for CMV virus. But prior to that he was walking at least a mile or more and even riding his bike til he fell on it. So bike is out. If you have the opportunity to do local I would and use Mayo as resource. We don’t have family close but neighbors have been great. Have faith and trust your gut. Oh his cancer is in remission and donor at 100% presently.

Kathy, we are fortunate to have two Bone Marrow Centers in our area and we were able to get everything done locally about 45 min away. He was seeing another oncologist but he wasn’t specialist and we were allowed to pick which hosp here in Indianapolis for treatment. It has been a true roller coaster but he has gotten a year that he possibly wouldn’t have had and not every one gets or has complications. We have been blessed.

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.

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.

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

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.

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.
https://connect.mayoclinic.org/comment/933074/

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?

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.

@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?