About Ron50

Ron50

Hi Pat, Next time you are talking to your Doc ask him about a medication called Questran ,I know several colon ca sufferers who have used it to help with constant diahorreah caused by chemo and Radiation. It is also used to trap cholesterol secreted in the bile and take it thru the system without uptake. I have used it for that and you certainly won't have loose stools. Best of luck Ron.

Ron50

Hi Ram and Silly, I totally agree that pain is relative. The kidney stones I pass are uric acid crystals and they are sharp. My gallstones were little black cholesterol stones and they did not really bug me until one blocked my pancreatic duct. Pancreatitis is the worst pain I have had if only for the duration of it. Having said that the acute pain I suffer with stones makes it a lot easier to endure the chronic pain of arthritis and sciatic pain. It has raised my pain threshold and as they say pain is just Gods way of reminding you that you are still alive. Hugs Ron.

Ron50

G'day everyone, I am over 14 years past stage 3c colon ca 6/13 nodes involved. I had a very old regime of chemo. Basically i had a weekkly infusion of 5 /fu and every second week it was enhanced with levamisole which is an anti -parasite med usualy used by beef producers. I had 48 sessions of the 5Fu. At first I was fine and kept on working,I started walking and for 18 mos I averaged around 50 miles a week. My problems started with acute pancreatitis followed by gallbladder removal. I started to notice that I was getting numbness in my feet. They checked me for diabetes. I started to suffer from renal coloic(kidney stones) My feet and legs were getting worse and were starting to swell. I had a urine test which showed I was losing nearly three gramms a day of protein thru my urine. I was put on to a high dose of prednisone for nearly 18 mos. During that time they tried me on lyrica as my neuropathy was so bad I thought my legs were on fire. The lyrica did not work which is probably just as well as it was costing me nearly $300.00 a month for the dose I was on.The prednisone did not help my kidneys and I was switched to methotrexate. Unfortunately when I came off prednisone I had a massive flare of psoriatic arthritis. The meth helped that a bit. I tried other drugs for arthritis ,sulfasalasine and arava. They all had dangerous side effects and I had to stop. All the while my neuropathy was getting worse and an mri diagnosed a problem in my lumbar region which was making it difficult to walk. All the drugs I was taking were designed to stop disese progression. I suggested to one doc that it was the pain that was killing me. He tried me on endep. That was scary and he soon stopped it. The neuropathy was now involving my left hand . I saw another doctor ,he tried me on morphine patches and neurontin.The morphine made me feel quite unwell and disoriented. The neurontin was just like lyrica only as I increased the dose my neuropathy got worse. They still haven't resolved my kidney problems after three kidney biopsies. I am not on anything for my arthrits though my rheumatologist has told me If it is not controlled it will cripple me. He is now suggesting Humira which is one of the biologicals and I need to have tests to see if I carry antibodies for TB ,and all the hepatitis before I can start. He is an ex oncologist and he believes most of my problems are long term effects of chemo. He believes that I may have suffered from these problems at some stage but the chemo has accelerated the problems. If the humira works it may control the arthritis and the spodylitis but not the neuropathy. At the moment my only relief is panadol osteo ,panadiene ,fish oil and vit d3. It is amazing how you can learn to live with pain, after a while it becomes the new normal and you really enjoy the rare times when for unknown reasons it back off a lttle. My best wishes to all of you for a pain free existence,Ron.

Ron50

Hi Johnathan, The notion that you may have cancer is enormous when you first hear it. So much so that it is difficult to get your head around it. I was dx with colon ca during a colonoscopy. When I woke up I asked the GI how I was. She happily told me I had a colon tumor that was blocking the colon and she could not get the scope past it. My brain at that time could not take it in. The next evening I was operated on. The cancer was removed . It was an aggressive stage three into six lymph nodes. Again I asked the surgeon how I was going,he just said too many lymph nodes ,too aggressive ,I think it will get you. By the time I was out of hospital I had time to really think about it and believe it or not I came to the conclusion that cancer would not kill me. I told the surgeon and later the oncologist of my conclusions. They both smiled and told me if there was anything I really wanted to do,do it now. I did not take their advice and went back to work instead.That was fourteen years ago and I am still ca free. Good luck with your diagnoses and treatment,Ron.

Ron50

Hugs Lizzie, I agree that survival is just the word that we have chosen to describe ourselves. Those who have fallen through the cracks wold be a more appropriate description. Best wishes for a healthier future and the hope that they can control the lyhpodemia soon,I know they are doing some in depth research on it in austarlia at the moment,Ron.

Ron50

Hi Eureka gal, I agree ,if it's not breast cancer ,it's not real cancer. I always try to get along to my local relay for life. Last year I don't know why I bothered,not one of the pink brigade even spoke to me. I am a colo-rectal survivor. I had dukes c 6/13 nodes involved. I had surgery and chemo in 1998. I have been ca free ever since. One of the things that surprises me is the lack of research. Sure each week they come up with a new idea to try to kill ca ,but wouldn't you think if some one had survived for fourteen years they would like to know why. How are you going? Are you still having treatment or are you ned at this point in time? Ron.

Ron50

Hi Eureka gal, I agree ,if it's not breast cancer ,it's not real cancer. I always try to get along to my local relay for life. Last year I don't know why I bothered,not one of the pink brigade even spoke to me. I am a colo-rectal survivor. I had dukes c 6/13 nodes involved. I had surgery and chemo in 1998. I have been ca free ever since. One of the things that surprises me is the lack of research. Sure each week they come up with a new idea to try to kill ca ,but wouldn't you think if some one had survived for fourteen years they would like to know why. How are you going? Are you still having treatment or are you ned at this point in time? Ron.

Ron50

Hi Eureka gal, I agree ,if it's not breast cancer ,it's not real cancer. I always try to get along to my local relay for life. Last year I don't know why I bothered,not one of the pink brigade even spoke to me. I am a colo-rectal survivor. I had dukes c 6/13 nodes involved. I had surgery and chemo in 1998. I have been ca free ever since. One of the things that surprises me is the lack of research. Sure each week they come up with a new idea to try to kill ca ,but wouldn't you think if some one had survived for fourteen years they would like to know why. How are you going? Are you still having treatment or are you ned at this point in time? Ron.

Ron50

I was dx in 1998 with aggressive stage 3 colon cancer. I lost quite a bit of my colon and had six cancerous regional lymph nodes amongst the thirteen removed. My surgery was followed up with 48 weekly doses of chemo enhanced every second week with 9 tablets of levamisole,an anti-parasitic cattle drench. My surgeon did not believe I could beat the cancer,too aggressive,too many lymph nodes, you may make three years with chemo. Well for whatever reason, I did not die as expected and I am now past 14 years. I was 48 at dx. I was not well off financially so I returned to work at 3 months post surgery. It was tough working whilst on chemo but you do what you have to. Since ca I don't drink or smoke (haven't for 30 yrs). A couple of years after chemo I started to get really fit. I was walking an average of fifty miles a week and lost34 kg. I don't think I have ever felt worse. I finished up in hospital and was dx with acute pancreatitis. The cause was a small black stone from my gallbladder blocking my pancreatic duct. I lost my gallbladder soon after. I no longer have gallbladder but now the stones are forming in my kidney and I regularly have bouts of renal colic(kidney stone attacks). I have had three kidney biopsies to find out why my kidneys leak up to three gramms of protein a day. 150mg is the max for normal kidneys. I have been dosed with high doses of prednisone,methotrexate ,sulfasalazine ,arava,lyrica,neurontin and any number of drugs to treat severe psoriatic arthritis and peripheral neuropathy. In the midst of all of that my wife got sick of me being ill and asked me to leave. I did,so now I live alone. I applied for a disability pension but they insist I am not ill ,so at age 62 I have to get thru a weeks work just to keep a roof over my head. Has ca changed the way I look at life,certainly...A good day now is when nothing really bad happens.. I have had discussions with my kidney and joint specialists. The kidney guy doesn't know what caused my problems , the rheumatologist on the other hand is an ex oncologist and believes that chemo and subsequent immuno-suppresants and steroids have left me in my current state. It doesn't really matter what causes it ,it's not going away. At the moment my gp is a bit worried about rising blood glucose levels so soon I may have to add type 2 diabetes to my resume. At one stage I used to worry about dying now I worry that I might go on living. There is a line from the Black Sorrows song harley and rose.Life goes on long after the thrill of living is gone! I guess that says it all. Ron.

Ron50

I'm new to the site but not to cancer. I was dx in 1998 at age 48. I had a colonoscopy and my gastroenterologist could not get it past the cancer. I was oprated on two days later. Apparently my colon was very close to rupture and likely peritonitis. They removed thirteen inches of colon and thirteen lymph nodes,six were cancerous. My surgeon described my ca as frightfully aggressive and his prognosis was three years at the most. I had scans and ultrasounds and every one (mysely included)was surprised that there were no mets in other organs. I started chemo three weeks after surgery . I had 5fu and leucovorin. It nearly killed me,I was heading for renal failure. Iwas switched to an old regime of chemo ,weekly infusions of 5fu boosted every second week with levamisole tablets . I had that pretty well every week for a total of 48 doses. I am still ca free after 14 years though I have not had good health during that time,I guess there is always a price to pay. Ron.

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