AML Survivor

Terron

jlmacb said:

AML and BMT Survivor
I was diagnosed with AML and admitted to hospital 11 November 2007, I had three rounds of chemo, the first round (induction) was 24/7. After the third round I had a partial BMT four months later in February 2008, my sister was a perfect 10 of 10 match. I had to have a partial as the chemo caused some liver and kidney problems and they were afraid I would not withstand a complete BMT. It took longer for the transplant to fully take, but I am now completely the same DNA and blood type as my sister and my liver and kidneys are doing well.

I had the most amazing care, still do (if you can believe it, I email my principal doctor and he emails me back) and after a year I returned full time to work, I work three days in the office, two days working at home, which is ideal as I still get pretty tired, definitely have chemo brain which is getting better (well some days…LOL) and my stamina has not completely returned.

Even with a 10/10 match I have chronic GVHD, and take serious medication for it. I have a really sore mouth, skin discolouration, restless sleep (most likely form all the steroids) and like everyone else whose immune systems are being suppressed I have to be very careful around people as I can easily get colds, flu (had H1N1) et all.

It’s only been about 18 months since my transplant and my doctor feels the GVHD will eventual subside (he thought it would take 18 to 24 months) although it seems like it is increasing in intensity. I would love to hear from others who are experiencing GVHD and how you are coping with it. I have to say I have a great outlook, but there are days when I get pretty tired of all the meds I have to take, the side effects and the GVHD.

There are so few people to talk to about AML and BMT, it is nice to find this site. We are all amazing survivors and while, as I’m sure we all say, “I just want to get back to my life”, this is my new life and I would love to know how others are managing and re-shaping their. Thanks everyone!

Aml - BMT survivor - Chronic GVHD
Hi there. Your story sounded similar to mine. I am 1 year post transplant doing well except bouts with GVHD. I also had a 10/10 match but from an anonymous donor! It has mainly affected my mucosa glands which is mostly mouth stomach and female areas. I am 51 and had a hysterectomy 2 mos. before my diagnosis. My doctors mostly treat me now with topical steroids and estrogens because my liver is also affected midly by gvh. It is very frustrating at times and I get very sick at times but I do the best that I can to stay healthy. I had quit working 5 years before getting sick (I had a small beauty shop). I started riding horses again a love from my childhood. I have been able to ride several times but ony for about 30 mins at a walk. I tire very easy but any thing that I can do makes me very happy after laying in the hospital a total of 10 weeks at different times. The longest being the first time 6 weeks for induction. I feel that I am a miracle and am so happy to still be here with my family. I have a 15 month old grandchild!!
It is hard to cope at times because I want to do all of the things that I used to do but I just try to be gratefull that I can do anything!!
Your working really impresses me, that's wonderful!! Chemo brain and neuropathy is frustrating also but it all improves with time I think. I can tell mine is worse if I am tired or have pushed myself to hard.
I wish you continued recovery and strength. It is good to talk with someone in a similar situation. take care...

OllieD

adnankhan_ee said:

induction failure
Hi, My 4 years nephew has intermediate category AML according to WHO classifications (M2 as per FAB classifications). He has gone through first cycle of chemotherapy (induction-1) for 9 days (Last day chemotherapy skipped due to unfavorable conditions). However, he took more than one month to recover from complications of this treatment. After recovery, his recent bone marrow aspirate shows presence of 14% blasts that means complete remission (CR) has not been achieved from induction-1. HLA matched donor from sibling is also not available for him. His oncologist has started second cycle of chemotherapy (induction-2) today. I am in a state of scare and confusion regarding fate of this innocent child. Please let me know the probable consequences of this induction failure and onward possibilities of a reliable treatment. Did anyone else encounter such situation during the course of his/her treatment?
God bless all.

induction failure
Hi - From what I have read during my research into Bone Marrow Transplant for AML, it seems as though many don't reach remission from the first round of chemo. Was told that in my age group, greater than 60, there was a 50% chance that induction would not succeed with remission. I was lucky, and also know others who have gone through a couple of rounds to reach remission. By now you should have an idea of the outcome. If you by chance are reading this, please let us know how it has turned out.
God bless
Ollie

Cancerfather

OllieD said:

induction failure
Hi - From what I have read during my research into Bone Marrow Transplant for AML, it seems as though many don't reach remission from the first round of chemo. Was told that in my age group, greater than 60, there was a 50% chance that induction would not succeed with remission. I was lucky, and also know others who have gone through a couple of rounds to reach remission. By now you should have an idea of the outcome. If you by chance are reading this, please let us know how it has turned out.
God bless
Ollie

Induction failure
My 48 year old daughter just had a failed first induction ( intermediate prognosis after cytogenetics)using standard 7/3 treatment. She is being evaluated at Hutchinson for the next round of induction. Somewhere around 30% failure rate on first induction. Stay positive and use this site to know survival is an expected outcome of treatment.

5547aml

Hi all I am also new to this

Hi all I am also new to this site. I was diagnosed with AML back in 1977 I was 27 years old. That would make me to date a 42-year survivor !!! I consider Sloan Kettering in New York City my lifesaver. 

I welcome any questions and or conversation about my experiences and treatment and protocol

brian50

5547aml said:

Hi all I am also new to this

Hi all I am also new to this site. I was diagnosed with AML back in 1977 I was 27 years old. That would make me to date a 42-year survivor !!! I consider Sloan Kettering in New York City my lifesaver. 

I welcome any questions and or conversation about my experiences and treatment and protocol

33 Year AML Survivor

Hi 5547am

l am ,sorry don'y know your name,just read your post from December last yesr.interestingly I too was 27 years old when i was diagnosed with AML.I received a B.M.T from my sister back in October 87 and have been in reasonable health since.I am soon to be 60 years old.

I received a triple heart bypass nearly 8 years ago(never smoked,and always kept fit).

I recovered well from that and still work a 10 hour shift every day.So can't complain.

I would dearly love to hear your story on how lifes been since your B.M.T,I presume you had one back then.

 

Best Wishes.

Brian.

noun

https://csn.cancer.org/discussion/comment/1664406#Comment_1664406

how to take care after diagnose

carsonmapes

Hello! I am 21 and was diagnosed with AML in February. Would love to chat more with you!

https://csn.cancer.org/discussion/192906/aml-survivor