Anyone dealing MDS and how are you doing?

Not too good. biggest problem is anemia and having to go for blood tests every week and then a blood
transfusion. My hemoglobin goes below 7 down to 6. starting my second round of chemo this next week
no problem with it. My BIGGEST problem is splitting headaches. Neither my neurologist or hemologist
can figure out the heaaches.

My husband was diagnosed with MDS in Dec 2023. Labs are declining. Just found a donor. Starting chemo and STC in 6-8 weeks. He feels fine so far but I fear the treatment.

Already on chemo for neuroendocrine so I'm not sure what they will do here possibly different chemo for this and different plan for this they will do a biopsy this week

@links, you may also be interested in this related discussion
- Living with MDS https://connect.mayoclinic.org/discussion/living-with-mds/

Have you recently been diagnosed with a myelodysplastic syndrome (MDS) along with pancreatic NETs (neuroendocrine tumor)?

Yes recently diaganosed with MDS and having a bine biopsy this week. Its my platletelets that are low.I hae been having chemo since July 2022 for the neuroendocrine tumor which seems to be stable.although new scans soon.
My wbc and rbc have been ok so I am hoping maybe maybe this is low on the spectrum and they can make a treatment plan or just watch?I am pretty sure with my other issue a donor is not on the table. Hopefully its just the platletelets that they will be able to manage. Very scared
I am so anxious and just want to know they can make a plan for me that keeps me going!

Was diagnosed with MDS last March ater a bone marrow biopsy. Have plaitletes that hover around normal, sometimes low. Monocytes are normal but very high, Rbc's and Wbc's have tendancy to be low and I have received shots for them. Biggest proble is have started feeling anemic and shot hasn't kicked in yet. Haven't had to have transfusion yet.

Thank you...waiting to get biopsy..I feel so out of sorts without knowing what the plan is going to be..just want to know they will have one...been dealing with my other cancer for a year and a half....the unknown is so hard...thank you so much...knowing they are doing something just made me feel better!!

My husband is a year out from bone marrow transplant and I’m not saying it was easy by any means but now that hopefully we are on the other end for awhile I reflect back and he says he would do it all again if it means getting to extend his life. He did have a back reaction after the first round of chemo and was hospitalized for a week and then did PT to get his strength back. I want to say you have to keep up with the exercise to keep your body able to handle a little more. When he was able to get transplant he also developed graph vs host disease and that was treated. I think the worst part of his ordeal is when he got CMV virus and was hospitalized for 2 wks for meds. That also played tricks with his mental state and that wasn’t fun. But as a whole you do what you have to do to get to the point we are now. His donor remains 100% so we are fortunate and cancer remains at bay. A side note if it wasn’t for his Parkinson’s that has been exaggerated we would be dancing strong. Some of these issues are NOT effecting everyone so please just take each day as it comes and you will be where we are today. Port free and appointments just once a month. 🙏👏🏻

I will add I am day 14 after transplant. Nausea control is my biggest issue. I am in a research test to prevent GVHD. I did not realize I would have 2 additional chemos. I thought the chemo on my plan was pills. There are pills after the chemo for 65 days.
Wow. I am still hospitalized till the 6th of May.
Eating? No so much. I would say I am glad i did it, not sure I would do another

I am pretty sure I can't do a transplant because of my other cancer situation
Just hoping for a different plan!
Wishing you a speedy recovery!