grosvenorles
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Well, we just learned that a 10 month course of Gemzar, which my husband tolerated so well and has kept his CC in check, has ceased to be effective. He now has 3 tumours in his liver which had been clear, totally normal. He is to start Oxaliplatin…………seems to be a rough chemo drug from what I’ve read of it but has anyone done well on it??? Has it held anyone’s cancer in check and is it worth the side effects? Any help on this would be greatly appreciated! Thanks! Leslie
Hello……when my husband was diagnosed with CC December 2006 I researched the heck out of this disease and over and over again there was that precursor ULCERATIVE COLITIS. As an individual who was never ill, robust in nature and health, he developed UC in 2000 due to “stress” or whatever causes that annoying condition. Then….WHAM! 4 years or so later he began developing the symptoms of CC! Had the original doctor said keep an eye out for PSC or CC he may have been eligible for much for successful/preventive care. I believe everyone who has UC should be in the know that they could potentially develope CC.
Please do not lose hope. My husband was diagnosed December 6th 2006. He had 2 drains put in and had enormous problems with leakage and worst of all the caustic nature of bile inflaming the skin around the openings. By the way he did not qualify for a whipple on top of all this and things looked pretty grim. His surgeon later put 2 stents (metal) in, removed those 2 drains and lo and behold he’s been great every since! Luckily, no infection, clogging, knock on wood. He is, and has been since April 2007, on a course of Gemzar (which he tolerates very well) and his disease has been kept in check
not gone
but no mets. Please look into stents with your doctor/doctors. There is no way we would be able to carry on normally with the unpredictability of those drains. Good Luck!Hello, Lainy,
My husband was diagosed in Oct/Nov 2006 and after liver biopsy, they inserted one drain. It has been most unpleasant for him and had to be painfully replaced on 2 more occasions. Then about 3 weeks ago, Wake Forest put in ANOTHER drain (much better done) in the center of his chest. These drains are sutured in and they shift and it takes a good 2 weeks to heal and discontinue leaking. I often ask myself as I see him flushing with saline if I could or would be able to handle these drains. He’s in right now have his drains replaced and here we go with another 2 weeks of healing while he starts 30 days of radiation. They seemed doomed not to work as they are just shifting around in a hole…..sutures break, there’s leakage, on and on. They do, however, let him pass bile and his color has improved (jaundice), itching, etc. so I guess they are a good thing.
Just “go with the flow”, Lainy (no pun intended) and know that they are a great help to his healing although a bit of a nuisance.
Good luck……………Leslie
Hi Celia……thanks for replying to my comments. Well, at the last minute they decided not to operate on my husband as it was not feasible according to radiologist who discovered some new unfortunate situation. Now, after seeing another specialist yesterday (Jan 12) he says he can handle it!!!! Resections, etc. Stan is in hospital today getting new biliary drains and being scrubbed. He begins radiation Monday for 28 days and they hope to shrink masses, inflammation. This is a real up and down situation and I feel for him as those drains don’t really add much to quality of life although there is bile flowing at last.
Thank you for your prayers and I will do the same for you and your husband……….I’ve never felt such powerlessness as to our future……..everything was just running along and then this very nasty situation wherein treatment/cure is a mixed bag. Good luck, Celia, and I hope you write back with good news!!!!!!! Cheers, Friend……..Leslie
