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long term affects after treatment

momoz71's picture
momoz71
Posts: 8
Joined: Mar 2010

hi i was just wondering if anyone else who had all leukemia had any other problems down the road after treatment and transplant. cause i have had 3 strokes a kiddney transplant and now depression cause of my thyroid not working i hadnt been taking my thyroid medicine cause all blood test would show my thyroid levels normalbut i know that this is not regular depression because of all the research of done on the thyroid issues and my biggest fear was the mood swings and that is one of the big things with thyroid problems i just want to know if there is anybody else who have issues similar to this or other problems. thanks

Matt1986
Posts: 2
Joined: Apr 2010

Hello,

My name is Matthew and I had AML when I was 2 years old. Relapsed after a bone marrow transplant but God healed me. One night when I was sapposed to die and the doctors called in my entire family, my mother prayed for me over the phone. They laid hands on me and the next day I had recovered. Docotors couldnt figure out what had happened but they never found cancer in my body ever again. As you can see by my name I was born in 1986. So I'm 23 years old now and I have never seen a single side effect of cancer since. I am currently in the Army as well, serving my country and am in Top physical shape. I dont get sick very often at all. I havent been sick in the last 2 years. Just know this, the mind is a very powerfull thing and you can talk your way into being sick. Mentality is the first thing to change before during and after cancer. I'm not saying that your current issues arnt real, but believing that you will get better is key. You will get better! There is a better life waiting for you and I hope you find it soon!

-Matt-

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

i completely agree with you. prayer helped me soooo much.

angelajh
Posts: 1
Joined: Apr 2010

Hi momoz71,
I was 15 when I was diagnosed with AML. I went into remission with Chemotherapy only and fortunatly have stayed there for 22 years. I am now 37 years old and I have just recently heard about the late effects of treatment. In the last couple of years I have experienced chronic fatigue and depression. I was also diagnosed with hypothyroidism. I have been on Antidepressants for 14 years now but still seem to struggle with it. I went to a new Dr. last week who suggested I be tested for some hormone imbalances. She said that could explain the chronic fatigue and some of the depression. Has anyone else experienced hormone problems as a late effect of Chemotherapy?

Lauren_nyc's picture
Lauren_nyc
Posts: 1
Joined: Jan 2009

Hi,

I was also diagnosed with AML at 2 and was on chemo for 13 years, though went into remission at age 5. Always believed there was something not quite right with the way my system worked, though I led a very healthy lifestyle - worked out regularly, ate very healthfully - couldn't really lose weight though I certainly gained it with ease. In my early/mid 30s I started to experience some real systemic issues that made me think I had diabetes, though tests would come up negative. I don't know if the chronic fatigue you're experience is what I experienced, but I would wake up feeling like someone had drugged me - I couldn't get myself going in the morning and just felt sluggish. By mid afternoon that feeling would return - I'd feel exhausted, yet by nighttime I couldn't really wind down and had trouble falling asleep. Then, I started having trouble regulating my body temperature and it just went downhill from there.

I went through a lot of tests, including a sleep study. Finally, I went to Dana Farber's Center for Adult Survivors of Childhood Cancers. The endocrinologist there didn't have any idea what was causing all my issues, but she recommended I see a metabolic specialist in my area (New York City) who has done a lot of work with cancer patients. That doctor immediately diagnosed me as being insulin resistant and said that my list of symptoms were classic diabetic symptoms, which were caused by the build up of insulin and glucose. The insulin resistance was caused by all those years of Prednisone chemotherapy.

After just one pill I felt a distinct difference - I'm not saying it solved all my problems; right around the same time I was diagnosed with an autoimmune condition also linked to my chemotherapy treatment and I suspect that I have a thyroid condition that has yet to be treated, so my own journey continues. However, I would suggest, that you review the diabetes symptoms and see how closely they compare to what you are experiencing. If they sound really familiar to you, then I'd suggest you talk to a metabolic specialist. It's not so easy to diagnose insulin resistance and many doctors simply look at whether your insulin and glucose falls within the acceptable AMA range - once it's above that range you're diabetic. If you're like me and you're eating right and doing what you can to take care of yourself, it can take quite a long time to cross that threshold, but in the meantime you are doing real damage and working against yourself.

If I can be of any help to you, please feel free to contact me. I've spent a lot of time on this and feel very strongly (obviously) about patient advocacy and am only too happy to be assistance if I can be.

--Lauren (e_inkwell@hotmail.com)

5381godwin
Posts: 3
Joined: Jun 2010

Hi, angela, did you file and receive SSDI social security disability.? I am a 3 year survivor and I was diagnosed with depression by the psych doc from SSDI and they still denied my benefits. I have memory loss, and chronic fatigue, chronic anemia not yet diagnosed because I see my onco yearly and some of the regular docs are clueless and think you're an alien when you tell them you are a post bone marrow patient. God'sLove.

Luckyfour
Posts: 2
Joined: Oct 2010

I was diagnosed with apml in 98! Went through induction with idarubacin, which was horrible! I was 22 at the time! Three more rounds of chemo two with more idarubicin chemo! I've been in remission ever since but really took care of myself out of great fear of ever having this awful disease again, I juiced organic veggies and fruits daily! Became a complete health nut! I was told I probably wouldn't be able to have kids again but after my last treatment 9 months later I had my period! I am now pregnant with my 4 child! Three since I've been in remission! Only to discover almost 12 years later I have heart problems from all the idaruabacin chemo! The tests I need to get I can't cause I'm pregnant to accurately diagnose what is going on! Found a paper published by Fred Hutchinson on after care for people who've had this chemo and I've suppose to be getting muga scans every two years and I've not had one! When I left hospital no long term side effects were ever disgussed! Apparently in women heart problems come about after chemo during pregnancy due to so much strain on the heart! They can surface up to 25 years later! I'm only 28 weeks pregnant and constantly am short of breathe! It's horrible! Also during labor you need extra monitoring on your heart which I had no idea and my third daughter was born with me not being able to breathe and her heart rate dropped to 40 beats per minute due to the fact that my heart couldn't sufficiently produce enough oxygen so she was pulled out with forcepts--very scary! My legs swelled up to twice the normal size (another sign of a heart in great distress! Get your yearly scans and know all the latest studies of what different chemo's affect! This has been a very scary eye opener! You think after 12 years everything is fine and then one day it changes! I can't wait to have this baby and get the scan I need and follow all recommended aftercare! I've read many other blogs that people who had apml came down with heart problems! Take care everyone and never give up life is so beautiful! I also have a thyroid problem and ongoing depression! Very lethargic for years and no doctor has any answers! I've pretty much accepted it and just adapted to my new life. Doctors are so quick to never listen and really feel there's an issue! I guess months of injecting your body with such a toxic chemical added some years to your body! I'm just blessed and happy to be alive! Take care everyone and keep up with all recent studies on the effects of chemo and medicines! Thanks

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