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Mer Stpierre
ParticipantCliff, I have no experience with your medications or situation. It sounds like you are going through a majorly difficult time right now. I hope someone has some experience to offer you. Please keep us updated. This is a wild ride. Offering you my positive thoughts.
ParticipantHi, I don’t know of any studies but I finally had one glass of red wine 5 months after diagnosis and my platelet count dropped drastically at my next counts, 2 days later. I also did not feel well. Therefore, I decided the glass of red wine was not helpful to me and I wasn’t going to try it again. I switched to wheat grass and papaya leaf to toast my friends:) I think wine is encouraged to stimulate appetite for some and for the resveratrol benefits. Unfortunately, it seems that the recommendations change from year to year.
ParticipantI added organic papaya leaf powder to my daily juice at the end of February. Unfortunately, my platelets have been as high as 145k and this week down to 25k. So, am unsure of any benefit (same with wheatgrass for hemoglobin). I haven’t seen any real scientific studies on either of these, just anecdotal accounts, but my oncologist agreed it could not hurt.
ParticipantKathy, sorry to hear that you spent your holiday in hosp. I have been on Vidaza for 4 rounds but numbers are tanking and I can’t have another round. I have been transfusion free for 3 months and I was worried about having to go back to having transfusions, especially now. I have asked all of my friends to donate but they are elderly and afraid. I hope they make it easier for the donation process and more information on where drives are being held. My best to you.
MerParticipantHello Dawn, I don’t know where you are located but here in Fl, you can contact hospice and they will contact the doctor for confirmation. If he is not taking any treatments they will come in. It sounds like you have a lot on your shoulders, I hope you can find some assistance.
MerParticipantHi Pat, I am a 77 yo female who was diagnosed with MDS RAEB2 October 18,2019. I had 2 transfusions and started Vidaza I.V. in November. Numbers thanked and I had transfusions in Nov, Dec and January after treatments. My hemoglobin never went above 8 and I was tired and depressed. After the transfusion in January my neutrophils went to -0. My oncologist held off for another 2 weeks and then decided to lower Vidaza to 50%. My numbers all increased by third infusion (the 50% and 5 week schedule, my hemoglobin went to 11.6, wbc and neutrophils still at moderate neutropenia but I feel more optimistic. Just finished another round, 4th and hoping for continued good numbers. My oncologist told me there should be progress by 4th or 5th but it would be hell before that. He was right…hang in there, it takes awhile. Positive thoughts and energy to all of us.
MerParticipantHello Len, The itching did not resolve with the discontinuation of the Retacrit, so we then stopped The prophylactic Bactrim and it seemed to relieve it a little, still really bad at night so we are still trying to figure it out. Living on Benadryl. But, onc decided to continue Vidaza at half dose with .6 neutrophils and I resumed the Retacrit because, for the first time since Dx, my hemoglobin went to 9.2 and stayed there for two weeks. I wasn’t sure about the Retacrit either, but onc thinks it is working. I am hoping for fewer transfusions, I have only had 5 and am tired of that already. I read a little about a chimeric transplant, but would love to hear what your specialist has to say about it. Hope it is something that will work for you.
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