My apologies Karinise, I stand corrected ,no disrespect intended, Ron. ... View more

Things are not going well for me at the moment. I have had to go off methotrexate because of a major flare in my neuropathy. My rheumatologist sent me to a neurologist. I told him I had severe peripheral neuropathy in both lower legs and my left hand and asked what was causing it and what could be done to stop its progression. He organised nerve conductivity tests, halfway thru the tech called the doctor in. He verified her results ,very little conductivity in the right leg and no signal in the left. He told me I had severe sensori-motor peripheral neuropathy. He can't help me and he does not know what is causing it. $600.00 for nothing. My gp decided to get me to wear a 24hr halter heart monitor after a cardiograph showed my ventricular ectopic beats seemed to be getting worse. I got the results today , In 23 hrs 32 min, I had 10229 ventricular ectopic beats ,60 single atrial ectopic beats ,on 190 occasions they were double or triplets and on one occasions my heart beat wildly for 14 seconds. There were problems with flat t waves and depressed lateral leads. I will be seeing a cardiac specialist in a couple of weeks. My gp is of the opinion that my internal wiring has been severely eroded by the chemo I was on resulting in short circuits everywhere. Really helpful as I don't know anyone who rewires human bodies.... Ron. ... View more

Hi Sunnyqld, I am sorry your hubby is in so much pain. I can say I know how he feels but it is different for every one of us. We all have different thresholds on pain and long term pain brings with it depression which just seems to magnify the pain. I have been on methotrexate for a few months now. I had to go off it as the pain from the neuropathy became unbearable. My rheumatologist checked my records and I had reported a similar flare the first time I was on mtx years before. I find I react poorly to most drugs now. Going off the mtx has resulted in a flare in my psoriatic arthritis as well as the neuropathy. I have been referred to a neurologist. He was upfront and answered my questions honestly... Whatever nerve damage I have will not heal... It is the same deal as the arthritis, any treatment will be to stop the progression of the disease. None of it stops the pain from existing damage. I have tried lyrica ,Neurontin and endep. They are all dangerous . Some you can't just stop as you risk seizures. You have to wean off them. I am going to ask one of my doctors to refer me to a pain management clinic. Perhaps I can learn to ignore it. Ron. ... View more

Hi Craig, My mainstay was still good old 5fu which I got via canula in the back of alternate hands each tuesday. Every second week for the three days after chemo I took 3tablets of levamisole each day.You find levamisole under vetrinary drugs. Basically it is an anti-parasitic used to treat intestinal worms in animals. It was dose critical in humans,too little and it did nothing,too much and it killed you. I think the technical term for the class of drugs is immuno-modulator. It was banned in the US in 2000 because of its fatal side effects and they believed there were better drugs. I don't believe that a drug gets banned because there is something better. It has become more prominent in recent times as the drug preferred by illicet drug dealers to cut cocaine. They believe that up to 70% of the street cocaine in the us is now cut with levamisole. It has led to some deaths and a lot of emergency visits to er's. I was ok for a few years ,then I got on a fitness kick. I was walking up to 50 miles a week. I began to lose feeling in my feet and lower legs. I suffered a bout of acute pancreatitis and lost my gallbladder(quite common after cc chemo). I continued to lose touch with my legs and it then started in my left hand. I began to suffer from peripheral oedeema,swelling of the legs. I was tested for congestive heart failure but my heart was ok.I started to pass kidney stones and in one urine test blood was found. I was checked for bladder ca,clear. Another random urine test showed excess protein in my urine. You can lose up to .015 grms of protein a day thru your urine. I was losing 3 gramms. I have had 3 kidney biopsies . All showed problems but none that relate to known kidney disease. Protein keeps your blood in your veins. When it gets low fluid leaks thru the veins and into surrounding tissue....Oedeema. My ccondition has continued to worsen. I lose around 4 grams a day and have developed pulmonary oedeema and an enlarged heart. they have treated me with all manner of crap drugs,prednisone,sulfasalazine,arave,methotrexate on three different occassions. The prednisone rotted my bones and caused osteoperosis and type two diabetes. The methotrexate whilst originally helping my protein loss causes flares in the neuropathy. I suspect the neuropathy has reached some critical areas and is causing neurological problems ,particularly with my heart which has starte producing ventricular ectopic beats. Simplified ,if you take my pulse I seem to skip every third beat. My 15 years of survival has not been easy. It is very difficult to convince doctors of l/t side effects of chemo, There is no research on it ,so there is no evidence of it,therfore it does not exist. So it seems I have some rare and unknown auto-immune disease. That in itself is very convenient as if Suffer any organ failure I am not elligible for a transplant because I am immuno-compromised. May you have a smoother path thru survival than me,cheers Ron. ... View more

Hi Craig, I was dxed stage 3c ,6/13 nodes involved at age 48. That was back in 1998. I had surgery and 48 sessions of old regime chemo. Some of it is banned now for use on humans. I have been ca free ever since. I have some long term issues from side effects of chemo. At the time they said they would deal with them when and if they arose. They haven't. But I continue to live and work. Good luck for the future..Ron. ... View more

Hi Tony , The usual progression is to have a colonoscopy. It involves a good clean out and a flexible camera inspection of your large bowel. The scope has tools and any polyps or suspicious areas can be biopsied.Good luck with the tests ,hope it's all benign or early stages. Ron. ... View more

Hi Jean, I know the way Samex felt towards the end of chemo ,but when it comes to cancer you do what you have to. I had 48 weekly sessions of 5Fu enhanced every second week with 9 tablets of levamisole ,three a day for three days after chemo. It was a dreadful drug ,it made those who took it feel like death warmed up. It was actually banned for human use two years after I had it because of fatal side effects. At the end of forty weeks my onc gave me the option of not doing any more chemo. He thought that I had enough both physically and mentally. I admit I was stuggling as I had worked thru chemo and I was doing it tough. I thought about it and I felt that If I quit and it came back I would never forgive myself...so I had the forty eight weeks. Did it make any difference? I don't know but I have no regrets.I did what I had too. At the time I had been dxed with a very aggressive stage 3 tumour into six lymph nodes. My surgeon gave me three years at the most based on the aggression and speed it was spreading. I have now been ca free for over fifteen years. That dreadful drug has caused me a lot of long term problem with side effects but I am still alive and still at work at 63. Good luck with your treatment and happy Easter ...Ron. ... View more

Does it always come back, well not always,I have been ca free (of stage3c ,dukes c) for over 15 years.I asked my onc the "how do you know"question years ago. He just said if you get sick or get a pain and it gets better or goes away it probably is not ca. If It gradually gets worse and never improves come and see me and we will check it out. Good luck with your recovery..Ron. ... View more

Hi Craftyone and Margo. Craftyone thanks for your post. You make me feel well. I am sorry that you have so many issues. I feel for you with the kidneys. I am holding my own with most of my kidney functions but my protein loss was around 4.2 grams last test. I have been put back on methotrexate to try to reverse the trend. I don't like it as it reminds me a lot of5Fu I had cor ca chem. Ihave some other issues arising from l/t chemo side effects. I have been dxed with congestive heart failure and pulmonary oedeema. My heart is enlargen. I had an echo cardiograph and a stress test. I have some calcification of valves and thickening of the walls , they also picked up an ectopic beat. I can skip a beat from every second or third to once in a while. The heart tester said it is not normally a problem except for someone with my risk factors. Hi Margo, Thanks for caring. I have been self employed for years so certs don't help. I do what I can to get by.Ron. ... View more

Hi Mandy, I used to mix a teaspoon of salt and a teaspoon of bi-carb in a glass of warm water. Let it cool and use it as often as you like. I used to do it up to ten times a day and It kept my mouth in good shape.. You can try sucking ice whilst you are having chemo if it is via an infusion. That helps as well. Ron. ... View more