AML, age 78, taking Decetabine/ Venetoclax, no transplant

Posted by lindagi @lindagi, Jun 30, 2023

I am a 78 yrs old with AML and opted not to have a bone marrow transplant due to my age. I have been in remission for 16 months thanks to regular cycles of Decetabine (infused, brand name Dacagen) and Venetoclax (orally, brand name Venclexta ). Anyone else on the same regime? Would love to hear your experiences and share mine.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

bettersleep68 | @bettersleep68 | Jan 22 3:32pm

I know this was an older post but I would like to know how you are doing...I too have aml and take vidaza and vencllecta..I am in remission but not molecular remission..looking forward to hearing from you....best wishes. This was for lindgal

Lori, Volunteer Mentor | @loribmt | Jan 23 9:26am

In reply to @bettersleep68 "I know this was an older post but I would like to know how you are..." + (show)

Hi @bettersleep68 It’s really encouraging to see that the V&V treatments are working to bring you to remission! From my understanding, not everyone with AML on V&V achieves a complete molecular remission but the medication can help keep the cancer from progressing. That’s a win!
It looks like this messages was meant for @lindagi so I’m sure she’ll see the notification and get back to you.

How are you tolerating the meds? Are you feeling ok now?

bettersleep68 | @bettersleep68 | Jan 23 1:48pm

In reply to @loribmt "Hi @bettersleep68 It’s really encouraging to see that the V&V treatments are working to bring you..." + (show)

@loribmt thank you for your reply ..it is nice to hear from someone who has time to reply to your text..you are a blessing on this site and have encouraged so many of us with this journey..thank you again ..

Lori, Volunteer Mentor | @loribmt | Jan 24 8:49am

In reply to @bettersleep68 "@loribmt thank you for your reply ..it is nice to hear from someone who has time..." + (show)

@bettersleep68 Aw, thank you so much for such a sweet message this morning! I’m grateful to be in the position to offer encouragement. I know from experience having AML is no walk on the beach but it’s being made much easier for so many patients with the newer treatments that our health care teams can provide! It’s really wonderful that you’re responding so well to your treatment! 🥰
Thank you for making my day!

sonieaml | @sonieaml | May 28 10:35pm

In reply to @loribmt "@bettersleep68 Aw, thank you so much for such a sweet message this morning! I’m grateful to..." + (show)

@loribmt
I echo the comments of others in thanking you for posting and your guidance on topics related to AML.
I am in deep remission after induction therapy (no BMT) treatment has been Venetaclax and Dacogen for 2 years. I am being transitioned to INQOVI starting June 23rd.
I am wondering if you know how others taking this chemo pill have tolerated it. I have a video call scheduled with the pharmacist to cover the side effects. With my care team I will still get blood draws every other week, MRD blood draw in April showed no evidence of my FLT3 or NPM1 mutations and MRD draw will be every 4-5 months (next one will be August) and yearly BMB in December. Last Dec BMB discovered the SF3B1 mutation. My Hem/Onc said Inqovi has shown promise in controlling the SF3B1 mutation. Any knowledge you or members reading this post can share will be greatly appreciated. Thank you again!

Lori, Volunteer Mentor | @loribmt | May 30 9:54am

In reply to @sonieaml "@loribmt I echo the comments of others in thanking you for posting and your guidance on..." + (show)

Good morning @sonieaml
Earlier this month (May 2026) the FDA approved INQOVI in combination with Venetoclax, for the first all-oral combination treatment for patients (75 yrs of age) or, patients with AML who aren’t eligible for intensive chemo. In the trial, treatment with INQOVI (which is decitabine/cedazuridine) plus Venetoclax yielded a complete remission (CR) rate of 41.6% and a CR rate of 52.5% in patients ineligible for intensive induction chemotherapy. That’s impressive!
There have been some really promising breakthroughs over the past few years for us folks over 70!

I did a quick search to see mentions of other members taking INQOVI for MDS or AML. Here’s a link to the search:
https://connect.mayoclinic.org/search/
It’s fantastic news that you’re showing no evidence of the FLT3 or NPM1 mutations!! FLT3 can be a bad actor! So I’m thrilled for you! The V & D regime has worked! Wishing you continued success as you transaction to the INQOVI. It looks to be another promising drug!
Thank you again for sharing your journey all along with us. It brings hope and inspiration to AML Warriors! ☺️

Have you been able to stop taking the venetoclax and dacogen for now?

sonieaml | @sonieaml | May 30 1:04pm

@loribmt Thanks for the link!
Currently I am scheduled for INQOVI every 6 weeks. Your post mentions it in conjunction with Venetoclax. If I understood my Hem/Onc correctly he is transitioning me to INQOVI to treat the SF3B1 mutation found in my December BMB (responsible for MDS). No need for V and D since my FLT3 and NPM1 are not detectable. I have a video call scheduled with the pharmacist next week to discuss what to expect from the side effects of INQOVI. I will post my journey as
I transition to INQOVI.
Prayers for all!

Lori, Volunteer Mentor | @loribmt | May 31 9:38am

In reply to @sonieaml "@loribmt Thanks for the link! Currently I am scheduled for INQOVI every 6 weeks. Your post..." + (show)

Hi @sonieaml The article I sent you was mostly just informative. The combo treatment is for new AML patients who can’t tolerate intensive chemo. It is in regards to the combination of drugs along with the INQOVI.
I mostly sent it to you so you could see the efficacy of the drug. INQOVI has really made a huge difference for some AML patients.

Your current story is nothing short of miraculous. To have those two mutations which are now undetectable is amazing. Years ago, if intensive chemo wasn’t an option, there wasn’t much hope for AML patients with FLT3 and NPM1. I had those two mutations, plus another. I was able to have the intensive chemo but even then I was in the high category for relapse. The chemo would only be good for another round or so and then I was out of options without the transplant. So, just in 7 year’s time there have been so many major changes for us older patients.
With your two mutations in complete remission there would be no reason to continue with the V & D. That is really outstanding! I wish you well with this transition to the INQOVI for the SF3B1 mutation.
As always, you know I want to follow along with you. We become family here… hugs!

sonieaml | @sonieaml | May 31 12:13pm

In reply to @loribmt "Hi @sonieaml The article I sent you was mostly just informative. The combo treatment is for..." + (show)

@loribmt
Thank you so much!
I know how blessed I am and continue to be on this AML/MDS journey. The timing of my diagnosis and treatment has been better than I have ever expected. When I declined the BMT my records showed 12 months and palliative care! My friend who was with me when I got my diagnosis and watched as I received my intensive induction therapy thought I would never come home from the hospital - she still cries and calls me a miracle too when we talk about how my care team and treatment(s) have given me my life back!
Blessings to you and EVERYONE on the Mayo connect site!

Lori, Volunteer Mentor | @loribmt | Jun 1 9:47am

In reply to @sonieaml "@loribmt Thank you so much! I know how blessed I am and continue to be on..." + (show)

Seriously, @sonieaml. This message brought tears to MY eyes this morning. A good friend of mine and I still get all misty-eyed recalling days when she’d stand in the parking lot across from my hospital room so she could wave to me! Undergoing the chemo for AML, I wasn’t able to have visitors and we had no idea if I was going to make it out of the hospital alive. I was there the first time for 5 weeks. So I can absolutely feel the depth of gratitude you and your friend share for the miracle that has you living your best life! We are walking miracles and I’m so trilled for you to have done this without requiring the bone marrow transplant! That’s enormous! I hope you can feel my Big Bear hug of joy through the computer this morning! 💝

Return to first page

Please sign in or register to post a reply.