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Dacogen/Venclexta not working?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (35)Comment receiving replies
Hi Lori,
Do you know of anyone who has AML with the mutation RPN1(GATA2)MECOM fusion, inv(3)? I was diagnosed with MDS in April ‘24. June BMB showed it had morphed to AML. I have had 3 rounds of Decitabin/Venetoclax, and my blasts have been 15-19, 9, and now 11. Am having trouble with low neutrophils, been at 0 or just a hair above for the last couple of weeks. I am going into the hospital for 10 days to get 2 new drugs, along with the Venetoclax, hopefully to get to remission! I was scheduled for a transplant but had to postpone it because of the low WBC. There are also 2 donors who are a perfect match for me, which is unbelievable! Was just wondering what others have used for medications, and how long their process was to get to transplant? Thanks so much!
Replies to "Hi Lori, Do you know of anyone who has AML with the mutation RPN1(GATA2)MECOM fusion, inv(3)?..."
I wanted to make a comment about waiting for BMT. I met with the transplant Team at Stanford 1 month after my diagnosis. I told them I wanted to keep BMT as plan “B”. When I met the following week with mu Occ/Hem MD. He said that when my AML “turns south” it will do so quickly and plan “B” would not be an option. They did find 5 matches however as I mentioned before I will not be doing a BMT. I get weekly blood draws and have not reached “remission” since my first round administered at UCSF in April. Just can’t get my numbers up thus waiting 3-5 weeks between treatments. Waiting for latest BMB results. For now just finishing latest round of Dacogen/Venclexta.
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Hi Vickie, (@marlysmae) I haven’t found similar postings in the forum with your specific mutation. Sometimes the mutations simply aren’t listed. Your mutation is somewhat rare as you mentioned in a previous post. It put you in a higher risk of your MDS progressing to AML, which it did.
So your team of doctors at Mayo will now focus on getting that pesky trouble-maker under control!
The low neutrophil count is unfortunate so hopefully once that starts to climb again, you’ll be set to go for the transplant! Sounds like that’s the only obstacle right now.
Congratulations with two potential donors, that’s really encouraging news.
The goal will ultimately be to get you into remission and see an upswing in your neutrophils so that you can get on with the transplant. Do you know what new treatment you’ll be receiving in the hospital over your course of 10 days?
Vickie, from my pretty extensive experience at Mayo-Rochester, you couldn’t be in better hands! I was just there last week for a followup and amazed all over again with my outstanding care, even 5+ years post transplant. So while I know these little hiccups you’re going through are frustrating and can be discouraging at times, don’t lose the faith or hope in a positive outcome! Your Doctors and their teams have your back! And so do I…along with all of us in this support group who have shared similar, yet different BMT stories.
Please keep me updated along the way. And best wishes for successful new treatment! Hugs.