AML successful treatment

Posted by lindagi @lindagi, Jan 6, 2025

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Hi old are all of these patients?

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Profile picture for doitbob @doitbob

Hi old are all of these patients?

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Hi @doitbob How old are all these patients? Well, in this particular discussion most of the members, I’d say, are in their late 60s to 90-ish. The conversation is regarding members with AML (acute myeloid leukemia), who are taking medications of lower intensity chemo to treat their leukemia.
Years ago, these drugs weren’t available, leaving many people in this age group without any recourse because intensive chemo wouldn’t be well tolerated. Without treatment the outcome isn’t favorable. Not everyone is eligible for a bone marrow transplant for similar reasons.
So having these drug options such as Venetoclax and Dacogen/Vidaza and others are life savers.

Have you or a loved one been diagnosied with leukemia or other blood cancer?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @doitbob How old are all these patients? Well, in this particular discussion most of the members, I’d say, are in their late 60s to 90-ish. The conversation is regarding members with AML (acute myeloid leukemia), who are taking medications of lower intensity chemo to treat their leukemia.
Years ago, these drugs weren’t available, leaving many people in this age group without any recourse because intensive chemo wouldn’t be well tolerated. Without treatment the outcome isn’t favorable. Not everyone is eligible for a bone marrow transplant for similar reasons.
So having these drug options such as Venetoclax and Dacogen/Vidaza and others are life savers.

Have you or a loved one been diagnosied with leukemia or other blood cancer?

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@loribmt
I’m a 84 year old male. High grade MDS/low grade AML. I’ve selected supportive care over chemotherapy. I don’t see a great difference in terms of quality of life and reactions to chemotherapy. As presented neither offers more than 8 months.

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @jalan00 Each person has a unique body chemistry so it’s very difficult to compare treatments and outcomes. The encouraging news is that your dad’s doctor feels dad is improving enough to be able to add the venectoclax. Those two drugs are often used in tandem to treat AML.
It’s not uncommon for blood levels to remain low during treatment. Optimally, doctors would like to see some blood count recovery near the timing of the next cycle. But sometimes that doesn’t happen as quickly as desired. If red blood cells or platelets get too low then there might be a transfusion to help during that time.
I’m expecting the doctor’s goal right now is to stop any progression of the AML. You mentioned your dad’s WBC is now lower. Do you recall seeing a lab result for blast cells?

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@loribmt Hi Lori. We haven't done any bmb so far except when he was diagnosed. When he first noticed symptoms in October (slight dizziness, found it harder to breathe) his wbc was 14 then when he was diagnosed in January and before he started treatment, it jumped to 27.4 with 40+% blasts.

After 2 rounds of Azacitidine, it dropped down to 1.73 so he had to do filgrastim to up his wbc before this 3rd cycle. Still no blood recovery so we are doing transfusions if it gets low.

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Profile picture for jalan00 @jalan00

@loribmt Hi Lori. We haven't done any bmb so far except when he was diagnosed. When he first noticed symptoms in October (slight dizziness, found it harder to breathe) his wbc was 14 then when he was diagnosed in January and before he started treatment, it jumped to 27.4 with 40+% blasts.

After 2 rounds of Azacitidine, it dropped down to 1.73 so he had to do filgrastim to up his wbc before this 3rd cycle. Still no blood recovery so we are doing transfusions if it gets low.

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Hi @jalan00 It’s normal for all blood counts to drop during chemo treatments. Chemotherapy is intended to interfere with quickly dividing cells, such as cancer cells. (In this case, the 40% blast cells noted in your dad’s test results. Blasts can also be detected with a peripheral blood smear from a blood test. No need to wait for a BMB. )

There are other quickly dividing cells in the body, such as blood cells, hair follicles, finger/toe nails, mucosal lining of the digestive system. These can be collaterally damaged by the chemo therapy, along with the cancer cells. When the blood levels drop appreciably during chemo, as I mentioned in another reply, it can take time to build up stores again. The transfusions can help to keep your dad’s red cells and platelets in a comfortable zone. The Filgrastim promotes faster regeneration of the white blood cells to help your dad be less vulnerable to infections.

With 40% blasts, the goal is to knock those down as they have crowded out a 40% portion of healthy blood cells for your dad. As they die off and/or aren’t able to reproduce, that makes room for healthy blood cells again. But even though our bodies produce incredible amounts of blood cells daily, there can be some interruption in the efficiency of the bone marrow during chemo. So hang in there…you and your dad. Let the chemo work to get the leukemia under control. He’ll keep getting transfusions as needed during the next coming months. It’s normal to do that. I can’t even remember how many transfusions I had during my treatments. And just for reference, I had an 85% blast level when I was diagnosed with AML.

Though it’s frustrating, please try not to get discouraged with your dad’s progress. He’s only had 2 rounds of chemo thus far. These are reduced intensity drugs so it may not work as quickly but they are much better tolerated by older patients than aggressive chemo. As we age, our bodies aren’t able to process drugs as when we are younger. His doctor is using good judgment adjusting the meds in relation to your dad’s health and now feels it’s safe to give him the additional drug that is often used in tandem with Azacitidine.

Do you know if there’s been another peripheral blood smear to check for blasts?

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Profile picture for doitbob @doitbob

@loribmt
I’m a 84 year old male. High grade MDS/low grade AML. I’ve selected supportive care over chemotherapy. I don’t see a great difference in terms of quality of life and reactions to chemotherapy. As presented neither offers more than 8 months.

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Hi @doitbob Well, I have to say, there are several members in Connect who have been in your shoes and have opted for chemo. This isn’t the intensive chemo that you may be comparing. There have been advancements in chemotherapy for patients of retirement age plus. As we age, our body can’t tolerate or process medications as well as when we were younger. With that in mind, newer therapy meds of reduced intensity have been developed which are better tolerated by older bodies.

There may be some side effects but many people are finding it’s not so bad and the chemo has given them the opportunity to stick around for many more years.
Of course, there are no guarantees in life so I completely respect your decision to forgo treatment in lieu of supportive care. It’s a very personal decision and I know you didn’t make it lightly. There certainly is merit to being the captain of your own ship and going in the direction you choose.
Since I’ve been very close to the ‘end game’ with AML, within 24 hours of pushing up daisies, I’m here for you anytime if you’d like to talk or have any questions.
Do you have friends or family around for support?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @jalan00 It’s normal for all blood counts to drop during chemo treatments. Chemotherapy is intended to interfere with quickly dividing cells, such as cancer cells. (In this case, the 40% blast cells noted in your dad’s test results. Blasts can also be detected with a peripheral blood smear from a blood test. No need to wait for a BMB. )

There are other quickly dividing cells in the body, such as blood cells, hair follicles, finger/toe nails, mucosal lining of the digestive system. These can be collaterally damaged by the chemo therapy, along with the cancer cells. When the blood levels drop appreciably during chemo, as I mentioned in another reply, it can take time to build up stores again. The transfusions can help to keep your dad’s red cells and platelets in a comfortable zone. The Filgrastim promotes faster regeneration of the white blood cells to help your dad be less vulnerable to infections.

With 40% blasts, the goal is to knock those down as they have crowded out a 40% portion of healthy blood cells for your dad. As they die off and/or aren’t able to reproduce, that makes room for healthy blood cells again. But even though our bodies produce incredible amounts of blood cells daily, there can be some interruption in the efficiency of the bone marrow during chemo. So hang in there…you and your dad. Let the chemo work to get the leukemia under control. He’ll keep getting transfusions as needed during the next coming months. It’s normal to do that. I can’t even remember how many transfusions I had during my treatments. And just for reference, I had an 85% blast level when I was diagnosed with AML.

Though it’s frustrating, please try not to get discouraged with your dad’s progress. He’s only had 2 rounds of chemo thus far. These are reduced intensity drugs so it may not work as quickly but they are much better tolerated by older patients than aggressive chemo. As we age, our bodies aren’t able to process drugs as when we are younger. His doctor is using good judgment adjusting the meds in relation to your dad’s health and now feels it’s safe to give him the additional drug that is often used in tandem with Azacitidine.

Do you know if there’s been another peripheral blood smear to check for blasts?

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@loribmt Hello! Just finished the first cycle of Aza + Ven. I remember seeing "Atypical mononuclear cells" in his CBC. It started at 44% before treatment started then dropped down to 23% after 2 cycles. During the aza+ven cycle they did a cbc on his 4th day and cbc were no longer able to detect any. Doctor said it becomes undetectable if it's small enough. Did cbc again today (12th day. I think doctor said this period is the nadir phase) and it's still thankfully undetectable although it looks like he would still need to do transfusions.

Thankful for the small wins and hope to see further improvements as we go on 🙏

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