Hi Tashie, My dad had all of these wonderful sayings . I sometimes wish he didn't use them so often on me. The one that defines my life after cancer is "If life doesn't live up to your expectations,,,,lower your expectations." I am now one month short of 15 years clear after stage 3 colon ca into 6 lymph nodes. am I happy? No. Am I well? No. My immune system no longer exists thanks to long term effects of chemo and auto-immune disese. My kidneys are shot ,I have several types of auto -immune arthritis. I have type two diabetes. I have just had a scan that shows an enlarged heart,congestive heart failure and pulmonary odeema. I have lowered my expectations. I don't expect miracles to save me and I don't expect an even break. A good day is when nothing really bad happens. The irony of it all is that given all the problems I have I really don't care. What's the point of worrying . Life has thrown everything at me including the kithen sink and it still hasn't killed me. So why worry . If i die tomorrow it will come as an anti-climax. So my advice Tashie is live your life to the best of your ability and then some. Don't worry about the small stuff like staying alive just get the most out of every day.... Big happy birthday hug...Ron. ... View more

(((((((((Maddie 86)))))))),Ron ... View more

Jan I am sorry for your loss .I can only pass on the words myDad said to me when I was getting over the loss of my wife and two little kids from a marriage break up. He knew I was very fragile and he knew where I was heading. All he said was Mate when you don't know what to do..do nothing and keep on doing nothing until the the path forward becomes clear again. So take your time to grieve ,remember the good times. Everytime a bad memory comes wipe it away with a good one. It won't happen overnight but if you are kind to yourself it will happen.Hugs Ron. ... View more

Thanks Vlasta, I read a lot of life in the lyrics of songs. We cancer survivors are like Simon and Garfunkels boxer,we are the sum total of every hit we have ever taken. I have been struggling with life lately what with the pulmoanary oedeema and the endless chronic dihorreah. I did a bit of a review of my survival. I know I react to most drugs but the chronic dihorreah has seen me taken off some drugs that were actually helping,methotrexate was one but the dangers of chronic dihorreah when you are a renal patient means stopping the drug. Remembering back It was not till my gallbladder op that my chronic dihorreah really started. I was not happy after the operation as my symptoms ,right flank pain and billious attacks never stopped. I was given some b/s reasons as to why. I have been doing some research on gall bladder removal. It seems that for ten percent of patients the surgery does not resolve the problem. After the op when you eat it results in a process called bile dumping. Instead of the bile being conrtolled by the gall bladder the liver just dumps it straight into the gut. This causes chronic dihorreah particularly not long after eating. This happens to me a lot. I wonder why none of my docs never considered this after all ten percent of people is a large number. I am trying a remedy I was originally given for cholesterol. Normal statins break down my muscle tissue so I am on an old drug called lescol in conjunction with questran lite . I could not take the questran ,with all of my internal adhesions it put me in hospital with a blockage. I am taking small doses of the questran. I binds with bile salts and takes the chaolesterol in them straight thru the system . with a bit of luck it may do the same for my bile dump and give me some relief. I may even be able to retry some of the drugs I have been taken off.....Ron. ... View more

Hi Leeanne, I finised chemo 14 years ago this month. I know a lot of my friends and peers were in the "What now"school feeling cut loose and rudderless and almost certain the cancer would return because nothing was being done for them. I could only feel thank goodness no more of that stressed feeling that I was being poisoned,which is exactly what WAS happening. I felt really good for about six months before a constant barrage of small ills each turned into major ills. I have had no recurrence of my colorectal cancer. But I have had cancers removed thanks to the savage immuno-suppresant drugs I have been on. At one stage in the last couple of years I have been required to take methotrexate and due to gastric side effects even self inject it. I cannot even begin to explain how repulsed I was at the Idea of any sort of chemo drug again after a decade free of it. It really sucks. There is now no drug that I don't react to. My system has been sensitised and the thought of going onto drugs that are used to stop organ rejection after transplant scares the crap out of me. I find that as I try each new drug, each more powerful than the previous one, I get more depressed. If I react to the lesser evil drugs ,what wil happen when I strike the real baddies. The only advice I can give you is live,live ,live. I don't mean take a walk on the wild side . If there is something you really want to do and if you can afford it financially and physically ,do it. Hugs and best wishes for the future.Ron. ... View more

Hi Caitlin, I had chemo every tuesday for 48 weeks. The drug that caused my problems I only had every second week. I took three tablets a day of levamisole for three days after my infusion of 5fu on the tuesday. I didn't smoke or drink at the time,still don't,Cheers Ron. ... View more

Hi to all. Caitlin I was on a dreadful drug called levamisole. It gave me a hot metal taste to all of my food and reversed a lot of the taste of other food ,salty became sweet ect. My taste returned to normal a few weeks after finishing chemo. Sebastian I am nearly 15 years out from chemo. I had no neuropathy when I was having chemo for colon ca but nearly seven years later I was exercising heavily ,walking up to 50 miles a week and I started to loose touch with my feet. It has gradually become worse . Now I can hardly feel my feet and legs apart from pain and it has spread to my left hand. I have tried lyrica ,neurontin and endep. None helped much and all had severe side effects for me. I keep on trying to get help from my docs but they seem to be out of answers. Lyrica and neurontin are not on the pbs for neuropathy only epilepsy so they cost a fortune so beware. Best wishes ron. ... View more

Looks like I am now paying for my stubborness for refusing to take any more immuno-suppressants for my kidneys. I have been off the kidney meds,last one was methotrexate ,for over a year. The last 24hr urine collection indicated my protein loss was getting close to three gramms a day. I have been waking up nearly every night unable to get any air. It's like coming up from under water ,grabbing a big breath,but nothing happens. I went to my doc about it. He sent me for a scan on my heart and lungs. I have so much fluid around them that I cannot breathe and my heart is struggling to pump blood. It's oedema from the protein loss. He has put me onto strong diuretics,I was already taking them in combo with one of my bp meds. I see my nephrologist in Jan . Looks like it is going to be a case of choose your poison,cyclosporin,cyclophosphomide,immuran or humira. Surviving sure ain't easy.....Ron. ... View more

Hi Jan, I am not a breast cancer sufferer although I have a male mate who has had it twice. I had colon cancer. My surgeon ruled out radiation because the colon moves around and is hard to target .It is the first choice in rectal cancer which can be targetted. My surgeon believed rad was far superior to chemo which he described as that filthy stuff. Having said that crc not a hormone triggered cancer and the crc chemotherapy was not designed to work in the same way as tamoxifin. I think that what you are having and have had will give you the best chance at survival. Cancer is very much a real time disease .All you can do is to go with the best available treatment at the time your cancer is dxed and have faith in it. All the best Ron. ... View more

Hi Gister, I don't have GIST I am a colon cancer survivor. I have however been a member of the american cancer suvivors net(csn) since nov 2001. I just had a look on csn and found GIST under Rare and other cancers. There were quite a few posts on it and in particular most referred to a new treatment drug called Gleevic which appears to be specifically for GIST. Hope this might help you ,Hugs Ron. ... View more