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AML successful treatment
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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Bless you Lori for the message~ for uplifting tone & the conviction with which you said it. He is on Day14 of chemo for AMML. He has some pesky mutations so BMT is already being discussed. He was a very sick guy with 40% blasts (& whatever else) when he came in. Many scary things happened in 1st 5 days, but all were handled with precision & he started clhemo on our 6th day here.
So grateful we're here.
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1 ReactionHi Joan, I’m so sorry you and your husband had to miss out on epic hiking trip to Spain…for now! However, don’t lose faith! Look at this is a little side trip on his (your) life journey together. Your husband couldn’t be in better hands than his team at Mayo. As I mentioned, I wouldn’t be here if not for them! If all goes as planned you and your husband can hit the ground running back to Spain for your planned excursion!
Wishing him all the best…and you too, as the caregiver. You’re a united team! Sending those good vibe and positive energy right back your way! Hugs!
Is your husband now on a treatment plan?
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3 ReactionsHi Steve, I saw your initial post regarding having AML/SCT in the Prostate Cancer Group first and replied to it before this one! I modified my reply after seeing this post in the Blood Cancer Group, so…you’ll be getting a double welcome! 😄
As a fellow AML/BMT survivor (post BMT +6 yrs) (and AML/BMT mentor for several organizations) I’m looking forward to hearing more of your journey. Please feel free to jump into any conversations where you feel you can share your experiences.
Have you experienced any issues with GVHD?
Oh Lori, you cant possibly know what a gift you gave me saying '6 years ago'~ thank you. We came to the Rochester Mayo clinic on 9/5- the same day we were to fly to Spain to hike for a couple weeks. The irony...
I send you good vibes, mojo & energy.
xoxo Joan
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1 ReactionWonderful story. I am a blood cancer coach and. Had a bone marrow transplant for AML in Feb 2023 from my son. I receive patients from various sources, the primary being HealthTree but also from LLS (Blood Cancer United), NBMTLink, and here from Duke Health. I have had (and have now) “coachees” who are in similar places. They couldn’t get SCT but went on the Venetoclax + Hypomethylating agent and the results have been amazing. Not everyone gets the 2+ year effect but some do and it is such a happy thing. I am happy for you and others for whom it has bought them Time, a most precious resource while we are here on this plane of existence.
Thank you for sharing your story.
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1 ReactionThank 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)!
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2 ReactionsWelcome 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?
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4 ReactionsWell 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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1 ReactionYour 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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1 ReactionHi @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?