Long term effects of 5fu and levamisole for colon cancer

ron50 Member Posts: 1,723 Member

   Hi I have just passsed the end of year 18 of survival from stage3c colon cancer into six nodes. A cancer that I was assured by my surgeon would get me within three years, too many nodes and frightfully aggressive. I survived surgery and 48 weekly hits off 5 flourouricil enhanced every fortnight with a drug called levamisole. I asked at the time of chemo ,what happens if I get lonf term side effects. I was told that any long term side effects would be dealt with as they arose. They have not been. I had 216 tablets of levamisole in 1998. In 2001 it was banned for sometimes fatal side effects. It was always a controversial drug. Too little did nothing positive , too much killed you. Supposedly just right as per your body weight helped treat late stage colon cancer. later studies have supposedly proven that laevamisole did nothing positive and did in fact in some cases cause death.   At 18 years post cancer I suffer from an unknown auto-immune disease of the kidneys causing nephrotic syndrome. Un treated I lose more than seven grams of protein a day thru my urine. The max acceptable loss is 150 mg. I have been taking cyclosporine for neary 18 months to stay alive. I have had three kidney biopsies . They show nothing that relates to known kidney disease. I have peripheral neuropathy in both feet and legs as well as left hand. It was dxed by a neurolagist who could find no cause for it and offered no treatment. Doctors tried me on lyrica, neurontin, endep, norspan and fentanyl patches. None made any difference. I have auto-immune psoriatic arthritis. I have auto immune hepatitis. I have balance problems . I have type two diabetes and osteo-penia from long term treatment with prednisone. I have auto immune endocrine problems including under active thyroid and low testosterone. My endo crononologist does not want to treat it because of fear of cancer from hormone replacement, I suffer 11000 premature ventricular and atrial ectopic heartbeats in 24 hrs. No one can tell me why. My nephrologist is the only doctor who has actually helped any of my conditions. High protein loss can cause blood clot resulting in embolisms and strokes. Levamisole is in a family of drugs called immuno modulators. That is enough to scare me. My kidney specialist is the only one who actually believes it is responsible for my problems but he said it would be impossible to prove short of an autopsy. Levamisole is becoming very well known to medical circles . It has become one of the drugs of choice for dealers to cut cocaine. For some reason it enhances the effect of the drug. It can also prove fatal to useres and not a pleasant death.

         With type 2 diabetes in australia I get free health checks and testing ,free diet advice and low prices on things like glucometers and test strips. I believe that a similar scheme should apply to cancer survivors as none of us seem to have a drama free survival . They chose the drugs they would use on us and I believe they have a duty of care to treat the long term effects of those treatments...Ron...Surviving survival is not easy!