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Jimmy Greenhut
ParticipantHi Jim, How can you be on watch & wait while getting Vidaza? Apparently your HB was getting low? Seems odd that they say that. Maybe low risk? What verison of MDS do you have. It’s 4yrs since I found out I have RS-T. I was off watch & wait 6mos later when my EPO shots didn’t work and my HB kept sliding. I was every 6-8 wks for a transfusion then. Are you transfusion dependent? From my team MDS makes you fatigued & breathing issues too, that’s the disease. I’m low risk & tried all the drugs out there, giving them 6mos to respond. They haven’t work, now 2 pints every 10-14 days. Just started a clinical trial. My last resort. I’m hoping it’s going to work only 42% efficacy. Will see, should know in 5mos if it extends the time frame for transfusions. Big Pharma has nothing else in the pipeline. GL Jim
Jimmy
ParticipantKeena, Congrats use the search for it. All at your fingertips. GL
ParticipantMary, may I ask how old you are? How many transfusions are you currently getting a month? How long have you had 5Q? You will increase your Ferritin “iron” which taxes your organs. What does the Dr think of your thoughts? I’ve tried all the drugs out there for RS-T. doing a trial now which is the last drug in the current pipeline. 4yrs I’ve had this. It gave me a PVC with the heart due to low HB. Now getting 4-6 pints a month. If I hadn’t or refused these drugs I might be 6ft under @62. Nasty fatigue etc… with this disease. It’s up to you. Best of Luck with your decision.
Jimmy
ParticipantHi Mary, just google MDS or DR’s if you can remember. Also MD Anderson Moffitt,educational video’s etc… You’ll notice on your tool bar video click on it. You can google your disease or loved one and see the latest update.
Hopefully this works for youParticipantIt’s called refractory anemia for me. You might have the same? See yes to drugs, says no, says just for a year a decade. There’s a small % who make it TI. Mutations play a factor amongst other flags. Do your DD. Frustrating, causing heart PVC, mildly enlarged spleen, not including fatigue and stamina. Peeps have it a lot worse on this site. Frustrating is best I can describe it.
Best of luck.
JimmyParticipantBuddy, all based on lab work. Your Dr is aware. Be pleased that your #’s are good. I was on watch & wait for a year. Now transfusion dependent still after trying 4 drugs in the past 2 years. I’m low risk too.
ParticipantHi,read below. Looking forward to hearing from you. JG
ParticipantHi Marilyn, come join a private FB group. You’re not alone. Not that many have our branch of MDS. It’s a great group, like family. MDS/MPN-RS-T RARS-T 2020. Only 50 are in the group. email me if you need to chat jnhut@aol.com
Take care, Jimmy
ParticipantGet your booster, ask your Dr if he knows anyone there? Your Dr might be able to give orders? For a hospital where you can get a CBC every 2 weeks and transfusions as needed. Or check with the MDS foundation. Your Dr should give you a couple pints to start off with too. You also shouldn’t be getting down to Below 7.5. 6.2 HB that is low. “Quality of life” Moffitt is on board with that for me. GL & happy travels 🙂
August 28, 2021 at 12:49 pm in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #54874ParticipantHad my 3rd shot of Moderna 10 days ago
ParticipantI got the vaccine. 2nd shot was more of a sore upper arm & swollen. That was my only side effect. On Revlimid & my #’s are low.esp WBC & Neut Ab.
ParticipantDavid, B-12 should show in your blood work. Mine was fine. The Dr wanted me to try it regardless of blood work, I got a series of B-12 while on Procrit 8 mos ago, which didn’t help me at all. No change in energy. Currently on Revlimid hoping to cut my transfusions. Give it a try, as it might work for you. GL
ParticipantNancy, Thank you for sharing your experience with me. Yes thank god for Ins. I’m hydrating & have dry skin on face & scalp. My RBC has dropped,the transfusion only lasted 2 wks. WBC holding. Best of luck to you too
ParticipantStacey, Thank you so much for your input & game plan. I’m happy it has worked for you. I’ll be getting the script next week as paperwork etc… delays it. It will be for 10mg
ParticipantTom, yes I was warned with rash & WBC count dropping. I have RS-T non 5Q. I tried Luspatercept #’s really didn’t bounce w/ side effects. Procrit 60k units weekly didn’t help either. Glad Aranesp is working for you 🙂
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