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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@loribmt

Hi Howard, If I remember correctly I think you had the first round of chemo beginning March 20 so that means you’re getting ready for another session in a few days. Usually with monthly chemo, we start feeling pretty good again by the end of the month, just in time for that second round. I know…not something to look forward to, but at least now you know that there’s a recovery period. 😊

How are you feeling? Have you had any bloodwork done to see if there’s a change in you numbers?

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Thanks for your comments an no my numbers keep goin down an I’ve had 6 transfusions to keep me goin now my doc is sayin I can have stem cell transplant after 2 or 3 more cycles probly can’t start 2 nd cycle due to numbers still too low hopin they start turnin around

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What is your average red blood , platelets and white cell count?
Curious because mine keep gong down as well

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@joycek

What is your average red blood , platelets and white cell count?
Curious because mine keep gong down as well

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You’re newly diagnosed with a blood cancer, AML. That will have an impact on your blood cell count, reducing them significantly as the cancer cells out produce healthy cells.
With the week you were in the hospital did you receive any chemotherapy for the AML?

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@loribmt

Hello @joycek the answer to your question: Anyone out there that has survived AML, that is elderly? Well, let’s just say…50s, 60s, 70s. Yes! I’m one of them, along with @alive @edb1123 @kt2013 and several other members. We’ve all required a bone marrow transplant after our initial treatment for AML, which has helped to put us in an enduring remission. We’re all here to offer encouragement and will answer any questions you have.

I also personally mentor several other patients at my local cancer clinic who have been diagnosed with AML. One woman, who is in her 50s didn’t have any mutations which can complicate treatment, so she didn’t require a transplant. She’s 2 years past diagnosis and doing fabulous after a few rounds of chemo.
3 other people I mentor are all in their late 60s, early 70s…required bone marrow transplants ( they are also stem cell transplants) and again, they’re doing really well.

Here is a link to a discussion full of conversations with members who have AML. You can reverse the order of the discussion from newest to oldest to get the most current replies.
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/

AML has a tendency to just show up out of nowhere and clip you right off at the knees without warning. That’s what happened to me too. The day after my 65th birthday was the first day of my symptoms. That was 4 years ago. I’m now 65, healthy, active and enjoying every day with my second chance with life. So yes, it is possible to get through this and you have a great group here who will help you along every step of the way.

Are you undergoing any treatment yet? Have you found out if there are any mutations linked with your diagnosis?

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Good morning! 10 years ago today I was diagnosed with a high risk AML. I received induction chemotherapy while my 5 siblings got tested to be a peripheral stem cell donor for my transplant. I was also on a research study looking at more aggressive treatment for my high risk AML.
Blessings abound! My sister was a great match and I had my transplant in June 2013. I have been in remission since. And the type of chemo I got on the clinical trial is now the standard treatment patients receive at my clinic for AML with my mutations.
I have found great strength in my faith and my trust in my clinical team. I certainly had moments of great fear that I can clearly remember now 10 years later. But don’t let fear make your decisions, then cancer wins.
I also learned many important lessons through this experience, i.e. letting go of the idea I am in control, allowing others to help me with grace, and always looking for a way to help others. I find peace and blessings, one day at a time. Sending you peace and blessings!

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@oldkarl

Well, Dell, I always try to help. I am 77 (April), and I actually know very little. But I can read. Some time back I had a good friend who was a very kind and capable doctor. She told me some of her thoughts and guidelines. First, if a person is our age and feeling good, there is nothing to make us think we will not live to 100. If something shows up that we can deal with in the space of a couple months, make that perhaps 95. If it really impacts our lives, and we need about 5 years to deal with it, we might make 90. If it is chronic, and will last, make the lifeline 85. If it is acute, 80. If the doctor wants paid in advance, make certain your will is in order. My guess is that I have about a year.
I have been anemic for about 60 years, and had some form of Amyloidosis for about 40 years. But both are progressing, so I expect about a year or so. Depends on how warm my wife wants to be with me. At my age and situation, no one has offered me any treatments. The stats say that I have more danger of dying from the treatments than from the diseases, so I guess I will just keep going until I see the brown side of the grass.
http://bit.ly/1w7j4j8

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Hi, I'm a new member of your group. My husbsand was diagnost...just yesterday with Mieloma Múltiple and your comment help me to keep some calm in this moment, but I feel so sad, and I don't have any idea..so..Thank You. God bless all of You. Hughs from Cuba.

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@yusbe

Hi, I'm a new member of your group. My husbsand was diagnost...just yesterday with Mieloma Múltiple and your comment help me to keep some calm in this moment, but I feel so sad, and I don't have any idea..so..Thank You. God bless all of You. Hughs from Cuba.

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Hi @yusbe, Welcome to Mayo Connect where you’ll be able to talk with other members who also have been diagnosed multiple myeloma. (MM). You’ll find everyone helpful and willing to share their experiences and offer some encouragement for you and your husband. I know it’s frightening getting a blood cancer diagnosis but there are treatments which can help keep the Multiple Myeloma under control.

Below, I’ve posted a few links to get you connected with other MM members where you’ll meet @gingerw,
@richardab @jimbond48 @carolee888 @tristram @cat1952 @patty67 and several others who either have MM or have family members with the condition.

Some are older conversations but you can reverse the order to the most recent replies. There is a button under the opening discussion paragraph which says “oldest to newest”. Just click there and the order will provide the newest answers for you.
Feel free to jump into any conversation. If you want to reply directly to a specific comment you’ve read, simply click the blue reply button and that will open a link with that member’s @name so they will get a notification.

~~Multiple Myeloma
https://connect.mayoclinic.org/discussion/multiple-myeloma-1/

~~Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/discussion/multiple-myeloma-299aae/

These links below are good sources to give you a little more information about MM with how the diagnosis is determined, symptoms and possible treatments.

https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
~~
https://www.cancer.org/cancer/multiple-myeloma.html

Your husband was just newly diagnosed so everything feels overwhelming and daunting because you don’t know what to expect. It can really help calm fears when you’re able to talk with other who are going through a similar experience.

Has his doctor talked about a treatment plan?

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@loribmt

Hi Howard, If I remember correctly I think you had the first round of chemo beginning March 20 so that means you’re getting ready for another session in a few days. Usually with monthly chemo, we start feeling pretty good again by the end of the month, just in time for that second round. I know…not something to look forward to, but at least now you know that there’s a recovery period. 😊

How are you feeling? Have you had any bloodwork done to see if there’s a change in you numbers?

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Lookin at stem cell transplant in next 4 to 6 months like to hear others here who have gone thru this

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@tyson1221

Lookin at stem cell transplant in next 4 to 6 months like to hear others here who have gone thru this

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Howard, it’s really positive that your doctors now feel you might qualify for a stem cell transplant. Life holds no guarantees, but a bone marrow transplant for your MDS is considered a possible cure for your blood condition. It gives you the best shot at a healthy life. While it’s not an easy journey it is one well worth the effort.

The link I’m posting is my story regarding the same type of stem cell transplant you’ll be having. It’s called an allogenic transplant. You won’t be able to use your own cells for this so you’ll need cells from a donor. They’ll be found for you by a transplant coordinator when the time for transplant nears.

Here’s the link where you’ll meet other members who have had allogenic stem cell transplant along with @edb1123 @alive @kt2013 @waveg
~~ My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

There are other discussions of bone marrow transplants in our forum. You can peruse those by typing Bone Marrow Transplant or Stem Cell Transplant in the search box at the top.

And of course, there is a lot of information online but I caution you to avoid visiting with Dr Google.
The information points out risks, side effects and some rather frightening details that may or may not even apply to you. In my case, I really believe that knowledge is power, so I did everything I could to research my treatments for AML. However, when it came to the bone marrow transplant, I just trusted my doctors and team at Mayo to do their thing and I just did what they told me. Because the information I started to read, only served to cause anxiety. Each person is different and we don’t experience everything that’s written in these articles. So we often start dreading things that won’t even happen.

When the time gets closer for transplant you’ll meet with a transplant doctor and their team. You’ll have educational classes and quite a few tests to see if you’re able to handle the physical demands of the transplant and medications.

I’m currently mentoring a lovely woman who is 69. She is in my hometown where I mentor patients who will require a transplant in my local oncology center. She is now 13 days post transplant and doing really well! She’s very relieved and excited to be able to have this second chance at life.
So, Howard, it will feel daunting but you have a lot of us here who have walked the walk and will help you with encouragement and hope…
Do you have any specific questions?

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@loribmt

Howard, it’s really positive that your doctors now feel you might qualify for a stem cell transplant. Life holds no guarantees, but a bone marrow transplant for your MDS is considered a possible cure for your blood condition. It gives you the best shot at a healthy life. While it’s not an easy journey it is one well worth the effort.

The link I’m posting is my story regarding the same type of stem cell transplant you’ll be having. It’s called an allogenic transplant. You won’t be able to use your own cells for this so you’ll need cells from a donor. They’ll be found for you by a transplant coordinator when the time for transplant nears.

Here’s the link where you’ll meet other members who have had allogenic stem cell transplant along with @edb1123 @alive @kt2013 @waveg
~~ My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

There are other discussions of bone marrow transplants in our forum. You can peruse those by typing Bone Marrow Transplant or Stem Cell Transplant in the search box at the top.

And of course, there is a lot of information online but I caution you to avoid visiting with Dr Google.
The information points out risks, side effects and some rather frightening details that may or may not even apply to you. In my case, I really believe that knowledge is power, so I did everything I could to research my treatments for AML. However, when it came to the bone marrow transplant, I just trusted my doctors and team at Mayo to do their thing and I just did what they told me. Because the information I started to read, only served to cause anxiety. Each person is different and we don’t experience everything that’s written in these articles. So we often start dreading things that won’t even happen.

When the time gets closer for transplant you’ll meet with a transplant doctor and their team. You’ll have educational classes and quite a few tests to see if you’re able to handle the physical demands of the transplant and medications.

I’m currently mentoring a lovely woman who is 69. She is in my hometown where I mentor patients who will require a transplant in my local oncology center. She is now 13 days post transplant and doing really well! She’s very relieved and excited to be able to have this second chance at life.
So, Howard, it will feel daunting but you have a lot of us here who have walked the walk and will help you with encouragement and hope…
Do you have any specific questions?

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Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team

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@tyson1221

Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team

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Well, I promise to stick with you through all of it and I know many others on here will be right along with you. ☺️
One thing that will be required is for you to have a caregiver who will accompany while you recover from the transplant, especially the first few months. Do you live near the clinic that will do the transplant?

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