Living with MDS (Myelodyplastic Syndromes)

Thank you Lori, Have had the bursitis pain for a while and my PCP did an MRI which confirmed it . My husband wanted me to go to his pain doctor and while reviewing it with my history, asked me what my count was. I showed him my latest blood work from September and it dropped to 62K. He said his concern was the possibility of bleeding and wanted me to consult my oncologist/hematologist if there was a way to increase my platelets. He contacted me and said yes an infusion, which I knew that, however I am on a wait and watch regiment. He said, at that September visit, when I hit 55K again he would do another bone marrow biopsy. My question is, the oncologist said the pain management doctor could do the infusion. I said you don't do it? and he repeated the pain management doctor can. That answer surprised me. Is that possible. I return the 11th not for the shot but review of the MRI he sent me for my back which also showed on the first MRI issues. Sorry I know this is rambling. I did learn one thing, and did not know this, the MRI showed and commented on the MDS. Hope this is a tad clearer.

hollie

Hi @hlmcneely, I’m hoping you can clarify what you mean so I can get a better understanding. Did your pain management doctor delay your injection to help you with your bursitis because of your low platelet numbers? Is your oncologist recommending a platelet infusion?

I’d like to ask any of you if you’ve had this happen. I apologize for not being active with comments however read daily. Blessings to all with MDS. I went to a pain management dr for various reasons (bursitis and back). He was concerned about platelets (62k) in September and possible bleeding from injection. Asked me to contact my oncologist/ hematologist if anything to raise the count. I am as many on watch and wait. My oncologist said I could get, and I’ll be honest not sure if he said infusion or transfusion. Which I said do you do that. His answer he can do it. I re-asked. The pain management doctor not you. He said yes. I’m not comfortable with that answer. I go back to pain dr the 18th. Do not see oncologist until January. Thoughts. Comments. Thank you.

Get a second opinion

I agree with this prognosis....my MDS is in remission of AML with no blasts. After 8 cycles of treatment of viadza and ventoclex my blood #s have stayed positive for WBC and ANC with slight challenges with platelets. Hemoglobin has progressed slowly to 12.5....which has been wonderful. No transfusions since July 11 this year. I have 5 mutations. Best to all on their journey.

I had to wait two years before I started treatment. My hemoglobin dropped to 10. Started reblozyl injections every 3 weeks. It helps produce red blood cells. I have had success with this treatment for my MDS. Good luck

Yes, my husband has MDS and he has had a rash on his face, neck, back, chest, arms and a bit on his inner thighs. He was treated with Prednisone for a week and it cleared up but when he stopped it came back. He is now on a steroidal cream and it is helping but it is also clearing up and returning. We are trying to figure out the cause. I’m wondering if it is from Luspatercept (sp) which his hematologist wants him to try again which he was taking before he went into the hospital for a UTI and blood infection. It also causes shortness of breath and severe fatigue. Is your husband’s rash itchy?

Good morning. I just wanted to check in with you to see how your husband is doing with his MDS. Any news on his condition? Is he a candidate for a stem cell transpant?

I as well am glad to hear of your husband doing better!!
I send warm hugs and blessings for all here!! I am so Thankful for each of you who share your stories and help bring comfort to me and understanding when I reach out. As we all approach the Holidays however we choose to celebrate and find joy in the small moments, know how you make a difference by sharing!!
Forever Thankful Brenda😊

I can’t say enough about being able to vent and get insights from you guys. I am thankful for this connection. Thanks