CommunitiesLeukemiaWhat happens when AML drugs stop working before transplant?

What happens when AML drugs stop working before transplant?

CM

Community Member

4 months ago

Oh yes, 66 yrs old have AML will need transplant, soon drugs are not working.now what???

21 comments
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accepted answer

Accepted Answer

When AML treatments become less effective, there are often additional treatment options that oncologists can explore before or alongside transplant planning. This situation, while challenging, doesn't mean the path forward has ended - many patients work with their care teams to adjust treatment approaches or explore clinical trials. Have others in this community faced similar treatment changes, and what conversations with your medical team have been most helpful during this transition?

3+ patients found this helpful

JO

Community Member

4 months ago

I’m 73 and have CMML, they said I needed stem cell transplant but said I only had a 40% chance of surviving. Did they tell u what your chances are for survival. I’m trying naturopathic route.

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CM

Community Member

4 months ago

45%, I guess or lower, it's according to what happens with the transplant and if it takes. The transplant itself doesn't take very long. I don't know where I'm going for transplant

JS

Community Member

4 months ago

Hello. I had AML once in 2012 then a recurrence late in 2013. They recommended a bone marrow transplant, My donor was from Germany. It's a tough road, but please have a positive attitude. You can do this. I'm sending prayers for You and Joanie starting tonight. 🙏 🙏 🙏 🙏

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KJ

Community Member

4 months ago

I’m 74 with myelofibrosis was told 40-50 chance of making it through. Decided not to so on Jakafi for issues but stopped helping now on vonjo keeping my fingers crossed and will pray for you

JO

Community Member

3 months ago

Judi sells: Thank You for prayers I don’t think u realize I have a 60% chance of dying from stem cell procedure. My oncologist says it’s probably more like 70% chance of not making it plus a 50% chance of the CMML coming back within a year. I’d rather live 2-3 years than be dead in 3 months from the stem cell therapy. I don’t know if my chances of survival are poor bc of my age or bc of my other health issues or both.

KJ

Community Member

3 months ago

I’m 74 they told me 70% wouldn’t make it because of age and general health. also all things said it takes about a year from start to being able to go where you want if all goes well. I chose not to do it. I’m going to live till I live no more.

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KJ

Community Member

3 months ago

I need to explain my oncologist told me about 50% about 1-year later I did go for interview with transplant team. They gave me 30% survival rate

JO

Community Member

3 months ago

I agree, Kenneth. I’d rather just keep going and enjoy my life rather than being really sick with having poor odds of survival

JO

Community Member

3 months ago

Kenneth Johnston: Do you know what mutations you have? What kind of health problems do you have?

KJ

Community Member

3 months ago

I have myelofibrosis that’s when the inside of the bones hardened and can’t make good blood cells and pain from hardening . Other issues are COPD and general old age pain (Arthritis)

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KJ

Community Member

3 months ago

There’s no treatment except stem cell and medicine too slow it down

CM

Community Member

3 months ago

50% chance

CM

Community Member

3 months ago

Thank you for all the comments, I need them , I appreciate everything

KC

Community Member

3 months ago

Joanie, I have cmml also. I started chemo this week, today is my last day until October 14, than another week of chemo. I am 68, they think I should have bone marrow transplant. I am a little worried. If it doesn’t work, life will not be good. Even after a year your body can still reject bone marrow transplant. Seems like a gamble for me. I will have another bone marrow test in November to check my blast. They start ed me on chemo to bring down.

JO

Community Member

3 months ago

I think stem cell is a big gamble. I got a 60% chance of not making it & 50% chance of returning in 1 year & basically a year of hell while going through process. I will have another bone marrow in 2 weeks for blasts. My last one was Dec 2024

CA

Community Member

2 months ago

When AML treatments become less effective, there are often additional treatment options that oncologists can explore before or alongside transplant planning. This situation, while challenging, doesn't mean the path forward has ended - many patients work with their care teams to adjust treatment approaches or explore clinical trials. Have others in this community faced similar treatment changes, and what conversations with your medical team have been most helpful during this transition?

JO

Community Member

6 days ago

I had a bone biopsy in early October & blasts increased from 6 to 10%, so my oncologist suggested I start azacitidine ( chemo) 5x a week then 3 weeks off. After my second round of chemo, my platelets are at 136. The best in years. I start round 3 next week.

KC

Community Member

6 days ago

Joanie, platelets are great, today I had labs my platelets were 35. Which been higher than usual. WBC and Neutrophil are still low. FYI, when I had consultation with Sloan bone marrow transplant team I asked about my age, being 69 is that near cutoff. They said no, they are doing up to 85 now.

JO

Community Member

6 days ago

Kenneth, That’s great! The reason Sloan gave me such a bad prognosis for stem cell was bc of the mutations. I have ASXL1 and RUNN1. There’s also a50%chance of return within a year of stem cell due to those mutations. Also, I was told by my oncologist that due to my age ( soon to be 74), the success rate is a lot less than someone in 40’s & 50’s. I wish u luck either way your stem cell & please keep us posted.

KC

Community Member

6 days ago

I have no choice, either do this or this will be my last holidays. Basically won’t make it through the summer. They gave me 80% of making it

JO

Community Member

6 days ago

Kenneth: if I had 80% chance of making it, I’d do it. Unfortunately I have a70% of not making it. So, I’ll just continue with chemo & hope & 🙏🏼 something comes up to prolong my life.

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