AML successful treatment

Posted by lindagi @lindagi, Jan 6 8:19am

Happy New Year! I want to share a happy treatment update for my wonderful response to Venetoclax and Dacogen (similar to Vidaza) for treatment of my AML. When I was diagnosed 3 years ago I was considered too old for transplant at age 78 here at the Mayo Clinic. I went into remission after my first cycle of treatment and have now stayed in remission for 3 years. My treatment has been ongoing and my team here has tweaked my routine several times to reduce side effects. Currently I am on a 5 week cycle of Venetoclax for 7 days at the same time I get Dacogen infusions for 3 days (recently reduced from 5 days). I will continue on some treatment routine as long as it is working. In the meantime I am enjoying a full life with family and friends although still taking precautions (weekly blood draws, avoiding folks with colds, etc.) .
I have learned a great deal throughout this period, including the variability of patient responses that can occur due to so many factors (genetics, other health conditions, etc.). I have also learned that there is at least one other patient here who is closing in on 5 years of remission with a similar routine! I am sharing my story to encourage you and wish all of you good outcomes as you face your treatment challenges.
Linda

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sonieaml | @sonieaml | Sep 22 6:32am

Thank you for your post! It is very encouraging!
I am on the exact same regiment with exception of number of days. My treatment is 1/2 which is working really well for me with 5 weeks between treatments. So very grateful for the research that has enabled new treatments to be developed for those of us with AML who cannot, or elect not to have a Bone Marrow Transplant (BMT)!

Lori, Volunteer Mentor | @loribmt | Sep 21 12:46pm

In reply to @justjoan11 "Well done you, Linda! Your post was a gift to read. Hubby (74yo) just diagnosed with..." + (show)

Welcome to Connect, @justjoan11. You’ve joined an amazing support team members who have been diagnosed with AML. I’m so happy to hear that your husband (and you) are under the care of the outstanding hematology dept at Mayo. I was just there for my annual follow-up at Mayo Rochester…my home away from home, having had AML and a bone marrow transplant 6 years ago.

@lindagi is one of several members who have benefited from the tremendous breakthroughs in the treatment of AML over the past few years. This form of leukemia used to have a less than favorable outcome for those of us in our ‘golden years’, especially if a bone marrow transplant wasn’t an option. With the drugs such as Venetoclax and Dacogen, Vidaz, etc, there is hope for many enjoyable years ahead.
What treatment has been recommended for your husband? Which Mayo Campus do you visit?

justjoan11 | @justjoan11 | Sep 20 10:51am

Well done you, Linda!
Your post was a gift to read. Hubby (74yo) just diagnosed with AML & we're so freaked, despite the amazing care our Mayo team is giving us.
Thank you truly

bettersleep68 | @bettersleep68 | Aug 7 4:33pm

In reply to @jacklyn "Sorry. It is so wonderful to read" + (show)

Your journey is like mine..I fractured 7 vertebrae and did the surgery..I was diagnosed with aml in jan 2024..I am on vidaza and vencllecta..having a bone marrow the 11of aug....praying for remission...and that we all have success with our journey

Lori, Volunteer Mentor | @loribmt | Aug 6 8:55am

In reply to @tawakol "Hi group of hope, My father was diagnosed as an AML patient 1 week ago. We..." + (show)

Hi @tawakol, It’s been several months since we’ve spoken. I just wanted to check in with you to see how your dad is doing on his treatment for AML. Has he been responding well to the Vidaza and Venclexta?

jacklyn | @jacklyn | Jul 11 6:09pm

Sorry. It is so wonderful to read

jacklyn | @jacklyn | Jul 11 6:08pm

It is so wi fearful to read all the positive results with the treatment by for AML. I am starting the 7 3 in 2 weeks. I Aldo suffer either anxiety since a bad fall back last November. I fractured my L1 and L5 vertebrae. The pain was indescribable. My back is better and the medication I am on now is helping my anxiety. It’s not perfect also on antidepressants which I have been on for years and they worked so well until the fall happened. Now this news about the AML doesn’t help my anxiety but your positive response to the treatment helps me to not be scared and could end up in remission. Thank you all and Hod bless you all.

agh83 | @agh83 | Jun 29 9:43pm

I have finished 4 rounds. I’m getting 70mgs of Vidaza (3 infusions) and 1 Venclexta/day for 5 days. I’m hoping to be able to reduce those dosages even more. I got way too much chemo the first couple rounds & have had trouble rebounding. At present my WBCs are rising, but slowly.

sonieaml | @sonieaml | Jun 29 1:58pm

In reply to @agh83 "I was diagnosed with AML three months ago at age 83. I am very sensitive to..." + (show)

I am 77 y o and was diagnosed with AML in March 2024. After induction therapy I have been on Dacogen and Venclexta and will have round 13 on Monday. Lots of dosage changes; down to one day of Dacogen and 2 days of Ventclextca (4 pills). Hopefully this will be my “sweet spot”. Best of luck to you and your care team as they find the best combination for you!

bettersleep68 | @bettersleep68 | Jun 21 3:52pm

Yes....5 day with two injections then off for 28 days....take oral pill everyday 100mg.....just wanted to know what others take.....

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