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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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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 3 12:29pm
In reply to @tawakol "Yes, their good news gave me hope on the contrary to the dominant feeling of fear..." + (show)
@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?

REPLY
2 replies
tawakol | @tawakol | Feb 4 1:37pm
In reply to @loribmt "There are some varying factors with AML, such as acquired genetic mutations, which can influence the..." + (show)
@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?

Jump to this post

You can check the attached photo ,please

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 4 6:29pm
In reply to @loribmt "There are some varying factors with AML, such as acquired genetic mutations, which can influence the..." + (show)
@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?

Jump to this post

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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