Acute myeloid leukemia (AML): What can I expect?

Posted by dell @dell060969, Aug 16, 2017

Newly diagnosed with AML, what to expect?

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@bettersleep68

Got 2 shots in abd....the pill is still going thru my insurance..had some vomiting when I got home..tummy is sore. One down and four more to go then 28 day break..thanks for caring

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Now that you have, one under your belt, so to speak you’ll know what to expect with the next 4! Hopefully you’ll be less fearful as time progresses.
If you’re experiencing nausea call your oncologist. There are meds you can take to help reduce that side effect of the treatment.
Over the counter items that can work are Queasy Drops. It’s a hard candy that can lessen the nausea. Candied ginger works a little as well. Another trick is a quick whiff of rubbing alcohol.
There may be some changes over the next couple of weeks with fatigue and lowering of your blood numbers. So if you have any questions, of course check in with your health care team. But don’t hesitate to post questions here! I’ve got your back, along with all your new friends here.
Hugs!

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Guys I have been a silent reader of this forum, it really has helped me a lot and gave a lot of courage to fight. Basically I'm from a 3rd world country, where cancer related things aren't discussed freely. So this forum has helped me a lot.

I have been recently diagnosed and treated for AML in last December. My January blood work of CBC was fine. Whereas February blood work showed a decrease in platelets (120,000) and neutrophils comparing to normal range. And lymphocytes got increased, also the presence of blast cells in peripheral smear test (2 to 3%) .Can someone let me know is it normal?

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@sunny1987

Guys I have been a silent reader of this forum, it really has helped me a lot and gave a lot of courage to fight. Basically I'm from a 3rd world country, where cancer related things aren't discussed freely. So this forum has helped me a lot.

I have been recently diagnosed and treated for AML in last December. My January blood work of CBC was fine. Whereas February blood work showed a decrease in platelets (120,000) and neutrophils comparing to normal range. And lymphocytes got increased, also the presence of blast cells in peripheral smear test (2 to 3%) .Can someone let me know is it normal?

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Hi @sunny1987. Welcome to Connect where you’ll always have someone to talk with about your cancer journey. So often friends and family don’t know what to say to someone who has been going through cancer treatments. Most of us in the blood cancer group have either experienced this ourselves or have loved ones whom they’ve cared for. We’re comfortable talking openly about treatments, what our experiences have been and to offer support to others going through the same situation.

From my experience with AML and conversations with countless others with this type of leukemia, treatment is generally several months of chemotherapy, not a once and done. We usually have a chemo cycle of 1 week, every 28 days for 2 or more months to bring us to remission. But even then, if there are mutated cells driving the disease, there may be more treatments and a possible bone marrow transplant to keep it from relapsing.

It sounds as though had treatment in December after being diagnosied but then nothing more? To answer your question, it isn’t ‘normal’ to have 2-3% blast cells in peripheral blood. Especially if no blasts were present in your January CBC with differential. What has your oncologist discussed with you about this increase in blasts with the latest blood work?

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@JustinMcClanahan

Hello @nicollissa and welcome to Connect! Thank you for sharing so much with @dell060969 regarding your AML diagnosis, your words of encouragement and your willingness to answer and questions Dell has. I especially appreciated your tips on how to recognize and avoid depression while going through treatment.

@nicollissa, right off the bat you mentioned something that caught my eye, hemophilia. If you are comfortable sharing a bit more about yourself, were you born with hemophilia or were you told that because your platelets were so low that you had hemophilia like symptoms of bleeding risk? I only ask because hemophilia is a genetic disorder and believe it or not, I am actually a hemophiliac! Naturally, my ears always perk up a bit when I hear or see that words because it is a rare disease and I don't ever meet many people with hemophilia. Even if you were not diagnosed with hemophilia but experienced hemophilia like symptoms, I can certainly relate to that part of your experience.

(If you are replying by email, it is always best to click VIEW & REPLY at the bottom of a notification to see the full discussion on a browser)

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Justin, my reason for being on the discussion page my husband has MF, so one page leads to another. My husband has dear first cousins that are hemophiliacs. You probably all ready know this, hemophilia is passed thru females to their male children. It doesn’t mean every male child will have it or every female will pass it on. His cousins were tested to find which girls carry and boys would have it. He had a dear cousin that lived a sheltered life his family always afraid he would get hurt somehow, after he grew up he decided he would live his life to the fullest. Which he did, he died at the age of 75 for something else.

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I have had MDS/AML IN December 2023 with 26% blasts, admitted to hospital for month leaving with astounding results. AML is no game. OS was less than a year. I'm now on my 15th cycle with AML in remission as of September 2024. MDS persists. My oncologist and care team at OCSRI Tulsa OK are top of the line. Blood #s are up and exceeding parameters which is another story.....but NO BLASTS!! I'm 80 years old and love a good fight. 👍

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@dancouclanel4

I have had MDS/AML IN December 2023 with 26% blasts, admitted to hospital for month leaving with astounding results. AML is no game. OS was less than a year. I'm now on my 15th cycle with AML in remission as of September 2024. MDS persists. My oncologist and care team at OCSRI Tulsa OK are top of the line. Blood #s are up and exceeding parameters which is another story.....but NO BLASTS!! I'm 80 years old and love a good fight. 👍

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Love this story, @dancouclanel4! You’re having amazing success with your treatment for AML. Going from 26% blasts to 0% and holding is miraculous! A little joke one of my doctors and I shared was, “Life is a blast until you find them in your blood.” Only a handful of us understand the nuances of that little anecdote.
Are you on cycles of Vidaza (azacitidine) and Venetoclax?

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Yes. Vidaza of 100 MG x 3 days + 7 days ventecolax every 28 days. Full strength vidaza over 5 days was burning me up....so we looked for a sweet spot. Soooo grateful for my team and God. He has other plans for me.

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@bettersleep68

Got 2 shots in abd....the pill is still going thru my insurance..had some vomiting when I got home..tummy is sore. One down and four more to go then 28 day break..thanks for caring

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Thought it was time to check in with you to see how treatment is going for the AML. Are you coming up on your next round soon?

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@dancouclanel4

Yes. Vidaza of 100 MG x 3 days + 7 days ventecolax every 28 days. Full strength vidaza over 5 days was burning me up....so we looked for a sweet spot. Soooo grateful for my team and God. He has other plans for me.

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That’s excellent news! There have been so many positive changes in the advancement for treating MDS and AML over the past years. I had AML 6 years ago but was fortunately able to have a bone marrow transplant at 65. That’s not always available as we age. So having these newer meds that are better tolerated has really given a rare gift of time when otherwise no treatment options were available!
So glad you found the sweet spot of Vidaza and here to offer encouragement to so many others going through AML/MDS!

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@loribmt

Thought it was time to check in with you to see how treatment is going for the AML. Are you coming up on your next round soon?

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I had to have aback procedure and did not start oral meds. Had one round and to start again next Monday. Do not like any of this.
Hope my back clears up ..almost too much to deal with I pray everyday..just down and out now

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