Hugs Jenny,good luck with the treatment. I had 5fu and stuff called levamisole. It wasn't pleasant but I had stage 3 c ca and it was into 6 lymph nodes so I had no option but to do chemo. I was lucky that my ca was on the corner of my transverse and descending colon so I did not need a bag they were able to rejoin it during the op. Life is never quite normal again following ca but I am still ca free 14 + years later,Ron. ... View more

Hi Sharon, When I thought I may have it I did as much research as I could about it. Strangely I got a lot of information about it from an author whose books I enjoyed,Robert Jordan. He suffered from it for years. I am no doctor but from what I understand there is no cure at this point but sufferers do go into long term remission. What I understand of the disease is that the body produces amyloid proteins. Normal proteins after a period break down and the body re-uses the bits and pieces to make new cells. Amyloid proteins do not break down and are not screened out of the blood stream and over time they are deposited in the organs including the heart ,kindneys,liver brain ect ect. Because they do not break down and are not eliminated the key to survival is to stop the body producing any more. If this can be achieved the patient can go into long term remission. I don't remember the exact name of it but there is an amyloidosis support site on the Australian net . Good luck to you both,,,Ron. ... View more

Hi Jenny, Sorry to hear of your diagnoses. I am one of the colorectal crew. Mine was colon but rectal and anal seem to be included in the grouping. It was brought to prominence a couple of years ago,it was the ca Farrah Fawcett suffered from. It is not that common,what treatment have they scheduled for you? Ron. ... View more

Hugs Sharon,a few years back my then nephrologist suspected that it was amyloidosis effecting my kidneys. He did a kidney biopsy and fortunately for me it was negative. How is your husband doing and what organs is it effecting? ron. ... View more

Hi Ian. I agree with silly. I don't think stress helps but I think that there needs to be a deeper cause. I recently read that the training for Vic firefighters over many years has included the use of some very dubious substances some carcenogenic. I have been thru a lot of stress over a long period . A marriage failed and with it went my two small children, ten years later I was dxed with colon ca. When I look further back tho I believe my ca stemmed from childhood medical treatment. At a young age I was dxed with suspected bronchiectisis a progressive deteriorating lung condition. I did not have it,the bubbling in my chest was a hiatus hernia ,finally dxed at age 26. I went thru the treat ment tho for the suspected disease. For nearly ten years off and on I took two drops of creosote in a glass of milk evry night. They now say that creosote is a major carcinegen,how many cells did it corrupt in my growing years. Hope you are going well with the colon ca my dx was dukes c into six nodes ,I am oficcially cured of that tumour I just have to watch carefully for new ones,good luck,Ron. ... View more

Hi Survivorsays, I am sorry that you are in pain,it's not fair and it's not fun. I remember asking when I had chemo what the long term effects of the drugs were. My onc at the time replied that they don't know and they don't really care, when they find a drug that kills ca and does not immediately kill the patient ,they are obliged to use it and deal with after effects later. Well it's now later and they aren't doing anything. When I finished chemo I had no neuropathy or pain. I was advised to become physically active to help prevent recurrence. For nearly two years I walked 40 to 50 miles a week. I finished up really ill with acute pancreatitis and lost my gallbladder. I kept walking but had to give up as I lost touch with my feet and legs. I caution everyone to beware of some of the drugs that they prescribe for neuropathy and arthritis. Some of them are as bad if not worse than the chemo drugs. I was on high dose prednisone for a year and a half and I would rate it one of the most dangerous drugs commonly prescibed. I give it credit for my type two diabetes,osteoperosis and lower back problems . It leaches calcium from bones at high doses and the dangers of it are just not stressed enough by doctors. It also thins blood vessels. I have given away all of the auto -immune drugs and now get by on standard pain killers. I hope your pain issues can be resolved quickly,Hugs Ron. ... View more

Thanks Stacey. I was officially dxed as type two diabetic a few weeks back. My gp believes that although I have the build for it ,it does not run in my family, the 18 mos of high dose prednisone is what finally was the last straw. I am managing it ok. I still don't know what is going on with my kidneys. My protein loss is still between 1.5 and 3 grams a day. The problem is that my biopsies show that I have a problem but it does not fit in with any known diagnosis. My nephrologist merely refers to it as an auto-immune disease of unknown type. Both he and my rheumatologist want me to go on humira ,one of the biological arthritis immuno-suppressants. I have decided not to go there. Every drug I take has had some serious side-effects ranging from liver to strange skin cancers. I have gotten used to the pain and the neuropathy. Fatigue is one of the issues I struggle with. I can't seem to get a good night sleep and often wake in panic. I have been tested for apnea but apparently I don't stop breathing but do stop absorbing enough oxygen. I think it is low oxy causing the nightmares and panic attacks. Life goes on.....Ron. ... View more

I must admit that when I read how todays chemo is administerred I get a little jealous. I started chemo in jan 1998 and the only option I had was via canula. I had 48 sessions and each week they used the opposite hand. By the end of the year my veins were almost black all the way to the shoulder. The upside was that it worked and I am still ca free. Good luck with your treatment Rubes......Ron. ... View more

Hi, I am a colon ca survivor but I did not have any of the later chemo drugs. I had an old regime of 5Fu and levamisole. It did not cause neuropathy at the time of chemo. My neuropathy started nearly eight years after chemo and has gradually gotten worse. It now effects both feet and lower legs and my left hand. I have tried most of the standard treatments,lyrica,neurontin,endep and even morphine patches. Nothing has had any effect on it but I have had a heap of side effects from all of the drugs. Now all I do is take panadol osteo,celebrex ,micardis plus,zircol and supplements like fish oil and vit d3. Mostly I just try to ignore the pain and burning and get on with life. Unfortunately I have a range of other auto-immune problems including psoriatic arthritis ,alkylysing sponddylitis, and protein urea from an as yet undiagnosed disease attacking my kidneys. The up side is that I have had no sign of ca returning after fifteen and a half years. Orig ca was dukes c into six of thirteen nodes. Best of luck with the neuropathy,if I find anything that helps I will let you know,Ron. ... View more

My advice Jay is to forget the rate and concentrate on the survival. I have quite a few friends who have mets to liver and lungs who are leading (and these are there own words) happy and productive lives. I was given virtually no chance of surviving an aggressive stage 3 colon ca. It had raced thru 6 nodes and my surgeon only just got it in time. He could not believe there were no mets but he still expected it to get me. Too aggressive ,too many nodes were his exact words. I had a year of chemo and I am still ca free fifteen and a half years later. How do you cope? Well first you have to accept the situation. I quickly accepted that I had cancer and that there was no time to stuff around. First up you have a surgeon who will operate. That in itself is great,your cancer is operable! Livers regenerate very quickly. Chemo is really crappy but it kills cancer. Give yourself every chance you can to survive. Good luck Jay hoping to hear a good outcome from your op and that you are on the road to recovery....Ron ... View more