AML - C-kit Mutation, Core binding factor

Posted by ewimpz @ewimpz, Mar 3, 2022

AML – C-kit Mutation, Core binding factor – adolescent woman
I am seeking others who have experience with this disease

Interested in more discussions like this? Go to the Adolescent & Young Adult (AYA) Cancer Support Group.

Hi @ewimpz I’m so sorry that this is impacting your life. Is this a diagnosis for you or a loved one? It’s an aggressive blood cancer but can have a very positive outcome with treatment. Often, when it is brought to remission, a bone marrow transplant is required to keep it from relapsing.

Mutations are identified so that the chemo can be targeted to that specific mutation. AML can be a tricky leukemia to treat because some of the cells can go into hibernation while undergoing treatment, and hide out. They can then reemerge some time later.

We get AML when at some point our immune system has stopped recognizing the cancer cells as an invader, allowing the immature blood cells, called blasts, to proliferate and overwhelm the blood, depleting the red cells. Chemo kills off these cancer cells. But there is a chance that they will emerge again, and if the mutation is still present, the immune system won’t pick it up and the process starts all over. That is why it is frequently necessary to have an entirely new immune system via stem cells so that you can stay in full remission.

There are a number of us in Connect who have had AML with varying mutations. I’m almost 3 years post AML and had a bone marrow transplant. My disease is in complete remission.
I’d like to invite @alive @edb1123 @leukskywalker and @mtoyne2021, whose daughter has AML, into the conversation so that you can speak with all of us and get a better understanding of what to expect.

Where are you in treatment? Has chemo begun yet?

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@loribmt

Hi @ewimpz I’m so sorry that this is impacting your life. Is this a diagnosis for you or a loved one? It’s an aggressive blood cancer but can have a very positive outcome with treatment. Often, when it is brought to remission, a bone marrow transplant is required to keep it from relapsing.

Mutations are identified so that the chemo can be targeted to that specific mutation. AML can be a tricky leukemia to treat because some of the cells can go into hibernation while undergoing treatment, and hide out. They can then reemerge some time later.

We get AML when at some point our immune system has stopped recognizing the cancer cells as an invader, allowing the immature blood cells, called blasts, to proliferate and overwhelm the blood, depleting the red cells. Chemo kills off these cancer cells. But there is a chance that they will emerge again, and if the mutation is still present, the immune system won’t pick it up and the process starts all over. That is why it is frequently necessary to have an entirely new immune system via stem cells so that you can stay in full remission.

There are a number of us in Connect who have had AML with varying mutations. I’m almost 3 years post AML and had a bone marrow transplant. My disease is in complete remission.
I’d like to invite @alive @edb1123 @leukskywalker and @mtoyne2021, whose daughter has AML, into the conversation so that you can speak with all of us and get a better understanding of what to expect.

Where are you in treatment? Has chemo begun yet?

Jump to this post

I am happy to share my experiences with you and help in any way I can

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I was diagnosed with AML six years ago. My mutations were particularly prone to cause relapse after chemotherapy. That is why I had my stem cell transplant 4.5 months after my diagnosis. I have been in remission since my transplant. It’s been a rough journey both during the transplant and afterwards, but it’s been well worth it for me. I still struggle with GVHD and other health issues, but I am able to work full time and enjoy my life.

Please tell us more about your diagnosis and proposed treatment. We are here to support you!

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My 19 yo daughter has AML t6;9 mutation FLT3. Diagnosed October 8th. Transplant Feb 25th. Her brother was her half match. She has gone through myeloablative conditioning and is hanging in there. She's a sophomore in college and still taking classes. We pray every day. I'm happy to answer any questions. Don't lose hope!

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Hello
I'm from Iran
My mother is 58 years old and suspected of osteosarcoma
Sampling has been done
And I am very worried and stressed

The tumor is in the right lower jaw
Its length is about 4 cm
Part of the lip is not completely numb.
It's been a year since lip numbness and we just realized this.

I am waiting for the pathology answer. Is there any hope? Is there a cure for this disease? Considering my mother's age, can she bear this disease?

What can I do during this time?

Thank you for guiding and helping me in this situation.

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@mahdiheydarigmail

Hello
I'm from Iran
My mother is 58 years old and suspected of osteosarcoma
Sampling has been done
And I am very worried and stressed

The tumor is in the right lower jaw
Its length is about 4 cm
Part of the lip is not completely numb.
It's been a year since lip numbness and we just realized this.

I am waiting for the pathology answer. Is there any hope? Is there a cure for this disease? Considering my mother's age, can she bear this disease?

What can I do during this time?

Thank you for guiding and helping me in this situation.

Jump to this post

Hello, @mahdiheydarigmail, Welcome to Mayo Clinic Connect. I want to reach through the computer to give you a calming hug. Your mother is young at 58 and can get through this! Osteosarcoma in the jaw, according to information I’m providing below, generally doesn’t metastasize outside the jaw bone and it produces higher survival rates. So that is a positive takeaway.
https://moffitt.org/cancers/sarcoma/faqs/about-osteosarcoma-of-the-jaw/
However, your mom will most likely require surgery to remove the tumor with a followup of chemo and/or radiation. This is not going to be easy for her…cancer never is. But I’m guessing your mom is a very strong woman and she will push through this.

What you can do right now is to remain calm and positive for her and for yourself. Truly, I understand how difficult this is. I am a surviver of a very aggressive cancer so I know that there is always hope…and I’m a decade older than you mom! ☺️ Getting through our cancer treatments is a challenge but worth the effort to persevere.

It will help your mom if you or someone close to her will accompany her to all appointments to take notes. Sometimes when the doctors talk it is overwhelming with all the information. So having someone else along to listen and make notations for later is important.
You can bring your own list of questions for the doctor as well. Let’s wait for the diagnosis to return and then we can talk about this more, ok?
You just gained a new family here on Connect so you’re not alone. Family support is important at a time like this. Do you have any siblings or relatives nearby?

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