28 year survivor but am sick of the side effects!



I was diagnosed with AML in 1986, I was 11 years old at the time.  I received chemotherapy, single fraction total body radiation and a bone marrow transplant.


Since then I have have been dealing with late effect after late effect and even though I try really hard to keep a positive spin on life it is beginning to get me down.


I have 

Fatty Liver Disease

Type 2 Diabetes

Metabolic syndrome

Adult growth hormone deficiency

Primary ovarian faliure

Congestive Heart Failure

I recently had aortic valve replacement surgery

and more recently diagnosed with BRONCHIOLITIS OBILTERANS!


BTW this is just a highlighted list of problems and is not definitive!


I understand that I am in the group of long standing survivours and I would love to talk to anyone who is experiencing servere late effects also.


A x




  • ConnieBH
    ConnieBH Member Posts: 4

    Hi Annabelle,

    First of all, congratulations, what a blessing to be a survivor, so many people give up, get depressed or just plain don't make it!  

    I have some ideas for you.  I don't know where you live, but have you considered seeing a specialized Naturopath?  My mother's Naturopath (N.D.) specializes in Cancer and recently met with her and gave her a TON of supplements to strengthen her organs and body from chemo and in general and thankfully, though her uterine cancer is rare, agressive and low prognosis, she's showing improvement and very little chemo side effects).  He has tons and tons of patients who are survivors and who have minimal side effects.  I know it's been 28 years for you, but he tests you for specific defficiencies that your body needs to strengthen those organs and body parts.  This one is in San Diego, but he's very renowned, he gives medical conferences throughout and is always busy, he's hard to schedule with but worth the wait and the expense.  Another idea is the Integrative doctors who also give you juicing and supplements to improve all organs.

    I hope this helps and maybe, just maybe many of your symptoms will disappear or improve!

    God bless you!


  • ron50
    ron50 Member Posts: 1,723 Member
    Hi Annabelle

       I am a survivor of stage 3c colon cancer . I had surgery and 48 sessions of chemo. I have just started year sixteen of survival. Post chemo I suffered acute pancreatitis and subsequently lost my gall bladder. I started suffering edeema in 2008 and have been dxed with a series of auto-immune kidney diseades including minimal change disease and fsgs. I have had three kidney biopsies and my current nephrologist has no idea of the cause of my protein-urea. The meds used to treat the various mis-diagnoses has tipped me into type two diabetes . I suffer from severe psoriatic arthritis. My kidneys have enterred nephrotic syndrome (losing around seven grams of protein a day) and I am heig treated with cyclosporine. It is helping the nephrotic syndrome and strangely my liver functions which have been in the red for years have suddenly returned to the black indicating I may have been suffering a chronic form of auto-immune hepatitis. I suffer 10,000 premature ventricular ectopic heart beats a day. I take lasik to treat peripheral and pulmonary edeema and I have recently been to a neurolagist who confirmed severe motor-sensori neuropathy in both legs and left hand. He has no idea of the cause  and has no suggestions for treatment. Surviving survival sure is not easy. Hugs Ron.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Ax


    I got about 12 years now from first treatment and 10 years from second treatment, and I too live with some bad side effects from all the treatment. None of the doctors told me anything about what I will live through; if fact they only gave me a few years to live after treatment but never told me that. The last time I see my Oncl doc right before I fired him he told me I have lived too long passed my time and he had no idea what was next. But even though I have all this I have lived to see my grandchildren come into the world and I am a part of their lives. I try to teach them the values I have and my faith in God as my strength and fortitude, maybe just maybe this is the reason God let me live so long, even with all the pain. Read my story when you get time www.restoringgodstruth.com/prison


    Tim Hondo