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herb
ParticipantGood luck today! Wishing for the best for you.
Just checked – no emails in inbox or spam. If you are comfortable, please provide your email address and I’ll try sending you.ParticipantNo email received. Even checked spam. You sent to Herb60wag@hotmail.com?
ParticipantColleen & John,
Good luck tomorrow. Fingers crossed for you.
ParticipantBecause BMB was done in Western MA, DFCI didn’t have full report at the time that would have revealed MRD. To be honest, I don’t recall any doctor speaking to us about that. I had biopsy at day 15 of Venetaclax whereas they want you to do a full 23-25 days for full effect. Because SCT will not be for over a month, I will be having another round of decitamine and another month or so of Venetaclax. Hoping and praying for good news for John. Can’t help but think it would be something if we were in at same time. Please feel free to email me at herb60wag@hotmail.com. I wish you all the best.
ParticipantVenetoclax did its job! BMP shows blasts went from 11% to 3%. Dfci is tentatively thinking sct in December. I didn’t realize that tp53 mutation means we have a higher chance of recurrence of mds even after sct. Good luck on the 25th and please let me know how it goes. Fingers crossed for you
ParticipantColleen & John,
BMB will be this morning. Been hoping and praying for good results. I have had more energy and started exercising again. Will let you know as soon as I get results. Good luck on the 29th. I’ll be at DFCI on the 25th to discuss next steps.ParticipantColleen & John,
I hope you are doing well and pray for your success. Did 10 days of decitamine which landed me in hospital for 12 days with several infections. I am now on a chemo cocktail of decitamine and Venetaclax. Tolerating it well this far. BMB scheduled for 10/23 locally (Western MA) and going to DFCI on 10/25 to discuss results and next step. DFCI has found SCT donor, hoping and praying chemo reduces blastsParticipantAmy & Pat, thank you for your thoughts and prayers. MDS is a hideous situation and through no fault of our own, we have it and are fighting for our lives.
ParticipantFurther to my earlier post, I completed the 5-day Decitabine treatment and started venetoclax 8 days ago. So far, I’ve tolerated it well. Bone marrow biopsy scheduled in 8 days. Hope and pray blasts reduce from 11% to under 5% so SCT can be scheduled (anonymous donor has been located).
ParticipantAmy, how has your father performed with Venetoclax? The Decitabine therapy did not work well for me so they want me to begin a round of Decitabine and Venetoclax.
ParticipantI’m 63 yr old male. Diagnosed with MDS P53 mutation 2 months ago. Also went to Dana Farber. Was hopeful to get accepted into APR246 trial but not a candidate because I had throat cancer successfully removed 10 months ago. Because this is a blind trial and was told you cannot move between groups, I elected Decitabine in hopes of remission (12% blasts) for stem cell transplant.
ParticipantI was diagnosed with MDS along with TP53 mutation about 2 months ago. I’m considered high risk with life expectancy of 8 months. Having Decitabine chemo treatment in hopes of getting MDS into remission so I can undergo stem cell transplant. Docs have not been optimistic (40% chance of remission then 20% stem cell survival odds). Hopeful I can beat the odds.
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