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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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Lori, Volunteer Mentor | @loribmt | Jun 21 1:56pm
In reply to @agh83 "I was diagnosed with AML three months ago at age 83. I am very sensitive to..." + (show)
Profile picture for agh83 @agh83

I was diagnosed with AML three months ago at age 83. I am very sensitive to drugs & was given way too much chemo on the first two rounds of Vidaza & Venclexta. My BM biopsy at that point showed no leukemia, but everything else was wiped out too. It has been hard for my white blood count to come back & so I can’t be considered in remission yet. At my request my doctor reduced the Vidaza by almost half & gave me only 3 infusions the 3rd round. And instead of 14 days of two pills a day of Venclexta, I only took 1 pill a day for 5 days. I’m repeating that protocol for round 4 starting on Monday. My goal is to find the sweet spot where I can take the smallest amount of chemo that will keep the leukemia at bay.

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Hi @agh83, As we age, our bodies really can become much less tolerant to drugs, as I found out myself. Our metabolism slows down and our kidneys and liver aren’t able to eliminate the waste as quickly, along with other factors.

So I’m glad your doctor is working with you to find that sweet spot! Hopefully you find the right compromise and start seeing your important blood numbers to get back to norma-ish again. But the good news is you had no signs of leukemic cells on your last biopsy! That’s awesome!
Sharing stories like this is so helpful to other folks going through a similar experience. So I hope you’ll keep us in the loop on how you’re feeling and if the lower dosages are working for you, ok? Hugs!

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Lori, Volunteer Mentor | @loribmt | Jun 21 2:02pm
In reply to @bettersleep68 "Please let me know what doses for vidaza and vencllecta..thanks" + (show)
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Please let me know what doses for vidaza and vencllecta..thanks

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Your hematologist oncologist would be the person to set the dosages for you with these meds. Didn’t I read in an earlier post that you were taking Vidaza?

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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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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)
Profile picture for agh83 @agh83

I was diagnosed with AML three months ago at age 83. I am very sensitive to drugs & was given way too much chemo on the first two rounds of Vidaza & Venclexta. My BM biopsy at that point showed no leukemia, but everything else was wiped out too. It has been hard for my white blood count to come back & so I can’t be considered in remission yet. At my request my doctor reduced the Vidaza by almost half & gave me only 3 infusions the 3rd round. And instead of 14 days of two pills a day of Venclexta, I only took 1 pill a day for 5 days. I’m repeating that protocol for round 4 starting on Monday. My goal is to find the sweet spot where I can take the smallest amount of chemo that will keep the leukemia at bay.

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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!

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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.

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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.

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jacklyn | @jacklyn | Jul 11 6:09pm

Sorry. It is so wonderful to read

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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)
Profile picture for tawakol @tawakol

Hi group of hope,
My father was diagnosed as an AML patient 1 week ago. We started treatment of VIDAZA 100 mg but CBC still shows low rates of hemoglobin at 8 et platelets 47. Doctors tells me that his body doesn't respond positively to the treatment and they need to add Venclexta. We are preparing on taking his first dose. Could you please tell me Are we on the right path of treatment? Does theCycle of treatment take years ?Because doctors tell me repeatedly that you have to know that there is always a high risk of mortality..
Thank you so much in advance

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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?

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bettersleep68 | @bettersleep68 | Aug 7 4:33pm
In reply to @jacklyn "Sorry. It is so wonderful to read" + (show)
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Sorry. It is so wonderful to read

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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

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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

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