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AML Survivor

rmccrae
Posts: 5
Joined: May 2010

Hello all, my name is Ryan. I was diagnosed with AML when I was almost 4 years old. I am now 23, and have some vivid memories of my experiences. Over the past year I have tried to collect as much information and pictures as possible to get a solid understanding of my battle. I am just now getting to the point where I feel comfortable talking about my past, and have put everything together at:

http://www.ryanmccrae.net

I just wanted to share my story, and communicate with people who may understand.

feather80
Posts: 11
Joined: Apr 2009

Hello Ryan,

I am 29 and had ALL when I was almost 6. I never used to want to talk about it. But at 19, I suddenly wanted to know everything about it and started to think about it all the time.
I have lots and lots of memories of it all and would love to talk about it with you: to see if we have the same kind of memories.
I read your story on your website, and would love to know more, if you are OK with it.

I hope you get this message,
Looking forward to hearing from you,
Feather

rmccrae
Posts: 5
Joined: May 2010

I am definitely open to talk about it. I have many random flashbacks, and have also wanted to learn as much as I can about Leukemia. P.S. You've got mail!

mtbikernate
Posts: 31
Joined: Feb 2010

Howdy. I'm a 1yr survivor of AML M2 t8:21. I like to know in pretty significant details the sorts of things my body is going through throughout treatments.

rmccrae
Posts: 5
Joined: May 2010

What type of treatments are/have you gone through?

steven j
Posts: 5
Joined: Aug 2010

You said you're a survivor, but want to know what your body is going to go through with treatments, I'm a bit puzzled by the question?

steven j
Posts: 5
Joined: Aug 2010

Rmccrae, I'm new to this site, just wondering are you, or have you suffered from this disease yourself? Steve.

jackgay
Posts: 1
Joined: Jun 2011

My father in law has AML. His doctor in Dallas Texas has given him three months to live. He is going to Houston for alteritive treatments. Are you familiar with MD Anderson? Any info you can share?
Vickie

5381godwin
Posts: 3
Joined: Jun 2010

3 year survivor, BMT. I have been a a licensed pharmacist for nearly 18 years when I was diagnosed.. considered by all as a health and exercise freak, read up on all the major chemicals our so called government allows the manufacturers of presciption and over the counter products to put in household and every day items. I used an so called household paint/degreaser product and wham -o , leukemia (AML);had several weaks/months to live..felt like days to me! The manufacturer who was sued by the EPA in California for not explicitly warning would- be users of the presence a leukemogenic in their glorious product, send their cut throat attorneys after my lonely attorney and basically scared him off to drop the case. So (after venting) I know that your wise father suspected with certainty that it was the insecticide that caused your AML, for I was also dissuaded the same.
Ryan, I want to ask you how long it took for your immune system (wbc,hemoglobin , RBC,etc/) to normalize. Like I said I am a 3 year survivor . My blood work has not regain the above normal levels I am still catching colds easily, fatigue, memory loss, tiredness, cranky, ....Also, were you placed on SSDI social security disability and for how long.? You are an inspiration to me and as I hold all things in Abba God, Jesus God, theHoly Spirit God
hands, I also hold you., Love.

jlmacb
Posts: 3
Joined: Jul 2010

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!

steven j
Posts: 5
Joined: Aug 2010

Hello Jimac, my name's Steve, I'm new to all this, I've been down the same road as yourself, for me it all started December 2005 with AML, followed by BMT after relapse, then DLI treatment after second relapse, all was ok for me until immunisation, now I'm having lots of problems with my lower limbs & recieving lots of tests & physio therapy. I hope all goes well for you & you don't have similar problems.

Terron
Posts: 2
Joined: Jun 2011

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...

rmccrae
Posts: 5
Joined: May 2010

Sorry it took awhile for my response, just got settled into a new job. It was about one year before my immune system stabilized. I had to take an antibiotic and wear a mask for close to 6 months whenever I ventured out in public.

As for SSD, since I was not an adult loosing a paycheck, I was not eligible for benefits. I am glad you stopped in to add to the network.

Stay tuned, I am actually doing some research, and eventually a write up on chemicals we're in contact with on a daily basis. I believe that there are many dangerous substances in our lives, and people are not as weary as they should be.

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

i was diagnosed with AML in december of '09. i have been battling it for 6 months. I just recently had a bone marrow biopsy and the results were clean! i am in remission.

RickGeorge
Posts: 5
Joined: May 2010

Been in remission for 6 months now. Clinical trial at MD Anderson saved my life but left me with a severe case of peripheral neuropathy. Have blood test again at end of this month, then a bone marrow biopsy in late July 2010. Then it will be testing every 6 months. Stay positive and enjoy life. I should have died, I appreciate just being alive. Take care.

steven j
Posts: 5
Joined: Aug 2010

Hello Rick, don't know much about this subject, maybe you could explain to me what it means, be most grateful, Steve.

MissShell
Posts: 1
Joined: Jul 2010

Hang in there - the battle is almost over. I am a survivor of AML and have been in remission for 15 years this August 2, 2010! I was diagnosed at age 19. If I can help at all please let me know. Again, congratulations!

Keri Black
Posts: 4
Joined: Aug 2010

What kind of treatment did you recieve?? Did you have any relapse???

steven j
Posts: 5
Joined: Aug 2010

All I can say well done, hope all goes well & the disease doesn't come back, been there myself a few times, been clear for about 2 years now.

mukeshraj
Posts: 2
Joined: Jun 2011

Hi, Its really great to see this blog of AML Survival.....My Son Pranay who is just 3 years and 9 months has AML M4 and his treatment is going on in Medanta the Medicity Hospital, Gurgaon, India. First cycle of chemotherapy for 10 days is just now over and his second cycle of chemotherapy is due on 15th June 2011. I dont know much about this AML M4, I am worried and scared...... I am sure that God will help my son to save his life. AML Survivals please send me your details on mukeshraj@yahoo.com or call me at +91 9910110662

OllieD
Posts: 6
Joined: Mar 2011

So sad to hear about your son. Good news is there is a fairly high success rate of long term remission the younger the patient is. AML M4 (which is what I have,) is a lot more deadly for those adults above the age of 60, and gets worse with advancing age. Also, most cases occur between 65 and 75. Good to hear your son made it through the induction phase and is entering into consolidation.

As far as having M4, it is sort of in the middle scale of AML - easier to treat than some, more difficult to treat than others and the most common. Other question is the results of the cytogenetic studies - further typing of the mutant cells. Gets quite complicated and best to leave to your doctors to understand.

So that it quickly. It is a lousy cancer to have, and again the good news is the younger one is, the better chance at a long term remission. It will, however, be a long journey and will need all the support and love you can give your son. Good luck.

Prayers are with you,
OllieD

adnankhan_ee
Posts: 1
Joined: Jul 2011

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.

OllieD
Posts: 6
Joined: Mar 2011

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
Posts: 4
Joined: Jul 2011

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.

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