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Jimmy Greenhut
ParticipantOwen, you should of been advised of a port or picc line. Not the shots in the stomach. I went through 5 cycles of Vidaza. Side effects and still needed transfusions. If it was working for you? ask that you don’t want shots in the stomach. I’m in clinical trials now. Inquovi was offered too. Side effects made me opt for the trials. Glad your surgeries went well too, all considering. Best of luck to you too.
ParticipantJoe, you should do fine. They’ll do a type & cross beforehand so afterwards if you need a pint or 2 you’ll get it. Had hernia surgery & stents with upper 8’s HGB. Your Dr gave you the green light to go ahead. They cover all the bases day of CBC & Diff so they know. Proper protocol with us. GL get the surgery and hopefully you’ll be pain free.
ParticipantHi Michele, regarding Neutropenia they should hold off on 1 cycle so your counts will impprove. My case it’s been 2wks now.
I’m on chemo & my ANC for the last 2wks was 0.87. My cycle is every 4wks. Yesterday they gave me a shot of Filgrastim which stimulates the bone marrow & hopefully bring ANC above 1. I’m back out to Moffitt in a wk to see if the labs have changed? They are planning to give 1 more shot next visit. Holding off works as my Platelets were 52, now 119 yesterday. Best of luck & bring this up to your teamParticipantHi Joe, I’ve been in treatment with the phase 3 trial @ Moffit. Going for my 13th treatment end of the month. Imetelstat did manage to get me from 7 pints a month to almost 8 week transfusion independence. My 11th & 12th treatments I had allergic reaction instantly. It never raised my HGB to bloodlet. Feb 3 pints, March 2 pints. Fatigued, weakness are major issues & gastro. Will see how long I’ll be in the study? FDA is going to approve it in 2024
January 12, 2023 at 3:54 pm in reply to: Geron Announces Positive Top-Line Results Trial Lower Risk MDS #59126ParticipantIt’s worked for me Imetelstat. Enrolled @ Moffitt phase 3 trial. I was 7 pints a month. It’s been
6 weeks now no transfusion. 1st time in a couple yrs. 10.2 HGB. FDA will fast track to make it available for others 2024ParticipantJim, that’s the disease aspect regardless of your CBC #’s. All in all, that’s great news for you. Hang in there Jim, you have to adjust some of your lifestyles. Will keep you abreast of my clinical trial.
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 🙂
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