Does anyone have acute myelogenous leukemia (AML)?

Posted by claireb @claireb, Jun 16 9:42pm

My 74 year-old husband was diagnosed 1 day ago with Acute myelogenous leukemia (AML). He is hospitalized right now and will be transferred to the U of MN tomorrow. He is in otherwise good health. He is weighing whether or not to proceed with treatment. He’s been told if he doesn’t have treatment, he has weeks to live. Does anyone out there have this diagnosis? Treatment experiences? I am numb since hearing of this diagnosis. What a time to be hospitalized in this age of the Covid-19 pandemic!

Claire, I’m so sorry to hear of your husband’s diagnosis. It’s devastating to get news like that out of the blue. I can empathize with you and your husband regarding treatment.
My AML journey started last year, February 2019. I had just turned 65; Robust, healthy, walking 10 miles day. Within 3 weeks that all changed. AML strikes quickly and randomly. But there is hope! I didn’t hesitate to start chemo. Living was paramount. If nothing else, that first round of chemo buys more time to spend with family! My AML-FLT3 mutation put me in a higher risk for relapse. So my only hope for a long term solution was a bone marrow transplant. I am thrilled to say I just completed testing for my upcoming 1st anniversary Post Transplant the end of June. So far so good…
So, from my perspective I’d say a resounding YES to starting initial treatment with the first round of chemo to clear most of the leukemic cells from your husband’s body. It’s not the end of treatment however! Depending on the results of bone marrow tests, your husband’s course of treatment will be discussed and planned out with you and your husband.
Not everyone’s treatment needs to end with a transplant. But it will begin with that all important first round of chemo.
This CV-19 situation is of concern. However, because of your husband’s diagnosis, he’ll be under a strict protocol for isolation to avoid infection as his immune system is already compromised with the leukemia. He’ll be safe. You’ll both learn to trust the Oncology team to take care of your husband’s needs. The oncologists and their staff will answer questions, provide you with information and should be able to give you some peace and comfort. Since this is so fresh in my mind, I’m more than happy to answer any questions or offer moral support. Stay strong, stay positive…you’ve got this!! Lori.

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@loribmt

Claire, I’m so sorry to hear of your husband’s diagnosis. It’s devastating to get news like that out of the blue. I can empathize with you and your husband regarding treatment.
My AML journey started last year, February 2019. I had just turned 65; Robust, healthy, walking 10 miles day. Within 3 weeks that all changed. AML strikes quickly and randomly. But there is hope! I didn’t hesitate to start chemo. Living was paramount. If nothing else, that first round of chemo buys more time to spend with family! My AML-FLT3 mutation put me in a higher risk for relapse. So my only hope for a long term solution was a bone marrow transplant. I am thrilled to say I just completed testing for my upcoming 1st anniversary Post Transplant the end of June. So far so good…
So, from my perspective I’d say a resounding YES to starting initial treatment with the first round of chemo to clear most of the leukemic cells from your husband’s body. It’s not the end of treatment however! Depending on the results of bone marrow tests, your husband’s course of treatment will be discussed and planned out with you and your husband.
Not everyone’s treatment needs to end with a transplant. But it will begin with that all important first round of chemo.
This CV-19 situation is of concern. However, because of your husband’s diagnosis, he’ll be under a strict protocol for isolation to avoid infection as his immune system is already compromised with the leukemia. He’ll be safe. You’ll both learn to trust the Oncology team to take care of your husband’s needs. The oncologists and their staff will answer questions, provide you with information and should be able to give you some peace and comfort. Since this is so fresh in my mind, I’m more than happy to answer any questions or offer moral support. Stay strong, stay positive…you’ve got this!! Lori.

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Thank you so much for your reply. We are having a virtual visit with a U of M oncologist tomorrow to discuss options and everything else. The biggest things we are concerned about is the isolation from family if he opts for treatment and the quality of life after treatment. We have many more questions that we haven't thought about. The nurse navigator from the oncology dept suggested we go to the American Cancer Society to help us formulate questions for our virtual visit. I may be in touch again.

Liked by Bob

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Hi @claireb, I'd like to add my welcome to @loribmt's. You mention that your husband will be starting with a virtual visit. You might find the advice from fellow members in this discussion to be useful:

– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

If you scroll to the end of this web article, you'll also find further information about questions to ask and more. This might be a good starting place to read before talking with someone at the American Cancer Society. They will be able to prepare more in-depth questions specific to your husband.

I'll let Lori and @grandpabob share their experiences about precautions he'll have to take because of the compromised immune system and isolation from family. That is tough. But that is a reality of leukemia with or without COVID. Those will be important and wise questions to ask the care team, too.

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Claire, I’m happy you’re able to get the virtual visit. At least you’ll be able to connect with the oncologist and have a few questions answered. Have a note pad handy. The isolation is a concern but frankly, through the 5 weeks i was in the hospital last year for the initial chemo, only my husband could visit and occasionally my adult daughter. That was long before CV-19. He would stop up once a day for maybe an hour. The rest of the time i was quite content to stay in touch with friends and family via my iPad. The chemo nurses were so caring and truly, became my family while I was in the hospital. Your husband may not have to be in that long and really, it’s nothing compared to “not being alive’ if you put it into perspective! As for quality of life afterwards? After the initial chemo, within a month he’ll probably feel fairly normal again. Occasionally there is some nausea during treatment. There are many meds available for that. Also he may lose his sense of taste for a few weeks. Our bodies regenerate quickly. There is a period of about a week where he’ll feel extreme tiredness and weakness while the blood count is low. Within days, however, the body starts recovering, making new white blood cells and it’s quick rise back to feeling pretty well again. Fear of the unknown is what is the most threatening. It’s daunting and scary. But many of my friends (whom I met during this journey), are alive and thriving. Some with transplants, some without. Depends on the type of AML. So don’t lose hope! This is survivable! Reach out anytime and don’t hesitate to send a private message. Good luck tomorrow.

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@colleenyoung

Hi @claireb, I'd like to add my welcome to @loribmt's. You mention that your husband will be starting with a virtual visit. You might find the advice from fellow members in this discussion to be useful:

– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

If you scroll to the end of this web article, you'll also find further information about questions to ask and more. This might be a good starting place to read before talking with someone at the American Cancer Society. They will be able to prepare more in-depth questions specific to your husband.

I'll let Lori and @grandpabob share their experiences about precautions he'll have to take because of the compromised immune system and isolation from family. That is tough. But that is a reality of leukemia with or without COVID. Those will be important and wise questions to ask the care team, too.

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Thank you, Colleen, for your information. It will definitely be useful. Also, thank you for changing the title of this thread. I wanted to go in and edit it, but didn't know how. This is my first time actually posting something!

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@loribmt

Claire, I’m happy you’re able to get the virtual visit. At least you’ll be able to connect with the oncologist and have a few questions answered. Have a note pad handy. The isolation is a concern but frankly, through the 5 weeks i was in the hospital last year for the initial chemo, only my husband could visit and occasionally my adult daughter. That was long before CV-19. He would stop up once a day for maybe an hour. The rest of the time i was quite content to stay in touch with friends and family via my iPad. The chemo nurses were so caring and truly, became my family while I was in the hospital. Your husband may not have to be in that long and really, it’s nothing compared to “not being alive’ if you put it into perspective! As for quality of life afterwards? After the initial chemo, within a month he’ll probably feel fairly normal again. Occasionally there is some nausea during treatment. There are many meds available for that. Also he may lose his sense of taste for a few weeks. Our bodies regenerate quickly. There is a period of about a week where he’ll feel extreme tiredness and weakness while the blood count is low. Within days, however, the body starts recovering, making new white blood cells and it’s quick rise back to feeling pretty well again. Fear of the unknown is what is the most threatening. It’s daunting and scary. But many of my friends (whom I met during this journey), are alive and thriving. Some with transplants, some without. Depends on the type of AML. So don’t lose hope! This is survivable! Reach out anytime and don’t hesitate to send a private message. Good luck tomorrow.

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Again, thank you Lori. I'm so glad you had a positive experience and that you are willing to share.

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Hello @claireb

I did not have AML, my cancer was Large B cell Lymphoma that in the end had to be treated using Car T therapy.

I was 62 years old when diagnosed. I did spend about 1 week in isolation when receiving one type of Chemotherapy, so not as long as one would be isolated if receiving a transplant for instance.

Chemotherapy can be tough, but as Lori stated, it can extend life, it is so worth it.
Lori outlined some of the side effects very well. in my case, after a few treatments I became extremely tired a few days after the infusions. Nausea was not a serious side effect for me, the meds that were provided post treatment were a huge help to combat that. Bodies react differently to Chemotherapy, joint paint, muscle aches, rashes can all be side effects of cancer treatment. Of note, it could be the associated medications that contribute to some of the side effects.

I had no interest in eating which was really hard on my wife not knowing what to make, I found small servings was best, also it is OK to just have cottage cheese some times. As difficult as it was getting daily exercise was critical, I feel to this day, if I had not been in great physical and mental shape prior the the diagnosis, I would not be here today.

Receiving the diagnosis is difficult, there are in many cases a lot of options for treatment, the success rates are better all the time.

I understand your appointment is tomorrow, I would suggest when attending the meeting, use the mindset that no question is a silly question, they are all important to your husband and to you.

If you are willing, let us know how things go for you tomorrow.

Feel free to reach out at any time.

All the best tomorrow.

Bob

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@grandpabob

Hello @claireb

I did not have AML, my cancer was Large B cell Lymphoma that in the end had to be treated using Car T therapy.

I was 62 years old when diagnosed. I did spend about 1 week in isolation when receiving one type of Chemotherapy, so not as long as one would be isolated if receiving a transplant for instance.

Chemotherapy can be tough, but as Lori stated, it can extend life, it is so worth it.
Lori outlined some of the side effects very well. in my case, after a few treatments I became extremely tired a few days after the infusions. Nausea was not a serious side effect for me, the meds that were provided post treatment were a huge help to combat that. Bodies react differently to Chemotherapy, joint paint, muscle aches, rashes can all be side effects of cancer treatment. Of note, it could be the associated medications that contribute to some of the side effects.

I had no interest in eating which was really hard on my wife not knowing what to make, I found small servings was best, also it is OK to just have cottage cheese some times. As difficult as it was getting daily exercise was critical, I feel to this day, if I had not been in great physical and mental shape prior the the diagnosis, I would not be here today.

Receiving the diagnosis is difficult, there are in many cases a lot of options for treatment, the success rates are better all the time.

I understand your appointment is tomorrow, I would suggest when attending the meeting, use the mindset that no question is a silly question, they are all important to your husband and to you.

If you are willing, let us know how things go for you tomorrow.

Feel free to reach out at any time.

All the best tomorrow.

Bob

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Thank you for sharing your experience.

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@claireb

Thank you for sharing your experience.

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Update: After our virtual visit with the oncologist at the U of M last week, my husband made the decision to not proceed with therapy. The oncologist we spoke with was incredibly knowledgable, kind, and patient as she addressed our questions and concerns. She laid out all the options without sugar-coating anything. It was a difficult decision for my husband, but one that I expected from him. He said the discomfort of therapy and the weeks of isolation from family would kill him.
He started receiving hospice care at home on June 20, two days after his 74th birthday. Our two out-of-state daughters came "home" to be with us and will be here for the duration. We are so lucky to have them in our lives. He is able to have ongoing FaceTime visits with our grandchildren. One of our daughters said the silver lining in all of this is that we have time to reminisce and say good-bye. We are making the best of the remaining days/weeks of his life. Thanks to all of you for your support.

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@claireb, A very difficult decision. I am so glad to hear that your family is OK with it.

Your daughters are really special committing to spend this time with you. You and your husband have obviously done wonderful work raising your children.

You are most welcome for the support you have received on Connect,
Take care, Please feel free to continue to reach out on Connect as you see fit.

Bob

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There is always a level of comfort when we can take charge of our own lives. This certainly wasn’t an easy decision for your husband but truly one to be respected. It’s wonderful your daughters are able to come and cherish this time together. Not everyone is blessed with that opportunity. It sounds like you have an amazingly supportive family, but as Bob said, don’t hesitate to reach out should you feel the need. Wishing you and your family peace, Lori

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@claireb

Update: After our virtual visit with the oncologist at the U of M last week, my husband made the decision to not proceed with therapy. The oncologist we spoke with was incredibly knowledgable, kind, and patient as she addressed our questions and concerns. She laid out all the options without sugar-coating anything. It was a difficult decision for my husband, but one that I expected from him. He said the discomfort of therapy and the weeks of isolation from family would kill him.
He started receiving hospice care at home on June 20, two days after his 74th birthday. Our two out-of-state daughters came "home" to be with us and will be here for the duration. We are so lucky to have them in our lives. He is able to have ongoing FaceTime visits with our grandchildren. One of our daughters said the silver lining in all of this is that we have time to reminisce and say good-bye. We are making the best of the remaining days/weeks of his life. Thanks to all of you for your support.

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@claireb, I echo what @grandpabob and @loribmt said. While you may accept your husband’s decision and support him, it doesn’t mean you have to like it. My father made the same decision, which we all supported. My mom still cherishes the special moments that the clarity of the decision allowed them to have. At the same time, she appreciated being able to voice with me that she experienced an array of emotions and needed to be able to talk about those feelings with others. If you’re ever feeling things like “I’m not ready for this” or “this isn’t what I want” or anything else that no one can predict, know that you can talk about it here – without judgement.

Liked by Bob, loribmt

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