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Amy C
ParticipantHerb, I truly pray for you to have good results. Keep up with water and hope you have a successful stem cell transplant! Oncologist told me he has a patient using the venetoclax and so far so good a year in.
ParticipantHerb- he has only just started, but another woman has been on it a year and doing well. Drink plenty of water if you start it. Very important. I hope it works for you.
ParticipantSorry for your loss Tara, my Father has the same, MDS with TP 53 and turned to AML. He just started Venclexa.
I am trying to stay positive with this drug, hoping for good results. Everyone is different I suppose. I hope that you have the comfort of friends and family around you. And wish you peace.
AmyParticipantHerb, good luck- I hope you get in to remission, the bone marrow (stem) transplant can work!
My father just started a chemo pill called Venclexa, I hope he has good results from it, because his
blast cells rose and he is now in AML Leukemia. Stay positive, drink papaya smoothies and protein shakes, tons of water. Prayers up!ParticipantDenise- I did not see this message. My Dad responded to vidaza for about 9 months- same disease as your husband and tp 53. He is now not really well enough to take it, oncologist has stopped it and he has been getting blood transfusions, I am afraid those are also starting not to help his platelet levels and this is not good.
How is your husband now?
AmyParticipantThanks Terri
Believe it or not my mother had a bone marrow transplant for AML 5 years ago, she’s doing great now. Some gvhd too.
My Father with MDS is not a good candidate, maybe due to age. I wish your husband well, I know the Moffitt center is Tampa , FL. Is doing great things MDS TP53.
AmyParticipantPaul- how is everything going now? I explored this trial for my Dad with a Dr. at the Moffitt center.
He has MDS Tp 53 as well. Thanks and good luckParticipantRose- this just choked me up. He is lucky to have you there at the end of his life. Breaks my heart. My Father started vidaza injections and neupogen in July/Aug as well. He has had one transfusion, he is very out of breath easily. I think his Red blood count is low. I am worried this is when things are going to stop being effective. He is very positive though. Did you husband have any sort of mutation they talked to you about?
Sorry for your loss. Amy -
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