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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@tawakol

Yes, their good news gave me hope on the contrary to the dominant feeling of fear and anxiety everywhere else. My father is 70 years old. He is in good health except worries that control him. I am not in a hurry but demanding me to sign a concent of high risk case frightened me alot.

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There are some varying factors with AML, such as acquired genetic mutations, which can influence the disease as well as the treatment I had it AML myself 6 years ago at the age of 65. With chemo and a bone marrow transplant I’m healthy, cancer free and living a great 2nd life.

If your dad is in good heath, has it been suggested that he might be a candidate for a bone marrow transplant? At this point in time it remains the only potential cure for AML.

Do you remember seeing the mention of blasts on your dad’s blood work? What were the mutations linked with your dad’s diagnosis?

I’m curious, what makes your dad’s case classified as high risk? Was it for the disease itself or the treatment?

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@loribmt

There are some varying factors with AML, such as acquired genetic mutations, which can influence the disease as well as the treatment I had it AML myself 6 years ago at the age of 65. With chemo and a bone marrow transplant I’m healthy, cancer free and living a great 2nd life.

If your dad is in good heath, has it been suggested that he might be a candidate for a bone marrow transplant? At this point in time it remains the only potential cure for AML.

Do you remember seeing the mention of blasts on your dad’s blood work? What were the mutations linked with your dad’s diagnosis?

I’m curious, what makes your dad’s case classified as high risk? Was it for the disease itself or the treatment?

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You can check the attached photo ,please

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@loribmt

There are some varying factors with AML, such as acquired genetic mutations, which can influence the disease as well as the treatment I had it AML myself 6 years ago at the age of 65. With chemo and a bone marrow transplant I’m healthy, cancer free and living a great 2nd life.

If your dad is in good heath, has it been suggested that he might be a candidate for a bone marrow transplant? At this point in time it remains the only potential cure for AML.

Do you remember seeing the mention of blasts on your dad’s blood work? What were the mutations linked with your dad’s diagnosis?

I’m curious, what makes your dad’s case classified as high risk? Was it for the disease itself or the treatment?

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Hi @tawakol, because this is a public forum we want to protect your father’s privacy. I’ve requested that our moderators remove one of the photos you sent because there was some personal information on the form. However, I was able to look at images to see that your dad’s diagnosis and results of his bone marrow biopsy. From my personal experience with AML, his tests looked very familiar. While I had a different type of chemo, the goal is the same. To reduce the large amount of blast cells and to help keep the disease in remission. I hope he sees a good response with the addition of the venclexta.

With the chemotherapy, your dad may experience some side effects such as fatigue with the monthly cycle of the meds. Usually within a week or so after chemo fatigue sets in as blood numbers drop. The cancer cells are being killed off but the meds can also affect healthy blood cells. They reach a low period but then start regenerating and your dad may feel a little more energetic just in time for the next round. This comes in cycles.

I wish him well and I’m here if you have any questions. Please let me know how he’s doing along the way, ok?

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Thank you , your post was a Godsend. After a down day yesterday with my husband’s doctors we needed some encouragement and hope. He has myelofibrosis and told yesterday some cancer cells is showing in blood work.
The question to him was, do you want to continue with platelet infusions or are do you want to try chemo. He wants a fighting chance to live as many years as possible so he starts Vidaza March 17th.

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So glad for you and the success of your treatment..started my treatment in February and hope and pray I do as well as you.
Would like to hear more successful stories..I am scared and hope my treatment gets me into remission this summer

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@bettersleep68

So glad for you and the success of your treatment..started my treatment in February and hope and pray I do as well as you.
Would like to hear more successful stories..I am scared and hope my treatment gets me into remission this summer

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In May 2023 MDS went to AML with 16% blasts. Blood #s were all over the place, transfusions sometimes 3 or 4 times a week. Blasts got to 26% by Dec '23....hospitalized to start vidaza and Venetoclax...7x14. By January 2 all numbers were in safe levels. By September 2024 AML was in remission. No transfusion since July 2024...on 15th cycle living near normal life at 80 yo. My care team at OCSRI Tulsa OK is first drawer. Blood # s are now dancing around suggesting other movements to the good. We'll take it.
It's been a journey. As you I was fearful 😰 of tomorrow's. Find joy in family, friends, and relatives. Do things that purposely challenge your grit. There's a beautiful world out there. Good luck.

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My wife Nancy was diagnosed with MDS in June of 2023 at age 78. She was asymptomatic so no treatments were done. The Cleveland Clinic diagnosed her with AML in December. Since we live in Georgia we went to MAYO Jax for treatments starting in January 2024. Since then she has had 10 cycles, some delayed due to delay in blood count recovery. Like Linda, her injections were reduced from 7 to 5 days, and her cycle rotation lengthened from 4 to 5 weeks. This has resulted in her feeling a lot better. During this period she has had four biopsies, two due to getting opinions both at Cleveland and Mayo. She is in remission as well so we are pleased with the protocol changes. Mayo watches over her labs, but our local oncologist is administering treatments and recommending modifications. All working so well so far. We are approaching two years since initial diagnosis.
Jim

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Thanks for your post, Jim.
I just started dacogen this past Monday. So far so good but it is early in treatment. I am optimistic and positive. I have a meeting with a transplant team on the 17th.
My wonderful husband (also a Jim) is my biggest supporter.
I am happy to hear your wife is doing so well. Prayers for her continued success!
Diane

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@drawlings0803

Thanks for your post, Jim.
I just started dacogen this past Monday. So far so good but it is early in treatment. I am optimistic and positive. I have a meeting with a transplant team on the 17th.
My wonderful husband (also a Jim) is my biggest supporter.
I am happy to hear your wife is doing so well. Prayers for her continued success!
Diane

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Diane I wanted to share that I have been on Dacogen and Ventclexta for almost one year and have to say the side effects for me have been non-existent. I elected to forego a BMT and am instead on maintenance for my AML. Through many months (and weekly blood draws) we may have narrowed down the combo that works for me: 1 day dacogen and 3 days Ventclexta…treatment every 6-7 weeks. I hope your meeting with the transplant team goes well. Do keep us updated. In the meantime prayers for everyone on this site

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@sonieaml

Diane I wanted to share that I have been on Dacogen and Ventclexta for almost one year and have to say the side effects for me have been non-existent. I elected to forego a BMT and am instead on maintenance for my AML. Through many months (and weekly blood draws) we may have narrowed down the combo that works for me: 1 day dacogen and 3 days Ventclexta…treatment every 6-7 weeks. I hope your meeting with the transplant team goes well. Do keep us updated. In the meantime prayers for everyone on this site

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Thank you so much for sharing your story with me.
I have no idea what to expect when meeting with the transplant doctor. I look at it as information gathering.
It is so encouraging to hear you have a plan that is working for you.
God bless!

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