belle
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Sorry for that red tape run around that you are experiencing as if dealing with the actual illness wasn’t challenging enough… When surgery was still an option for my sister, Dr. Nagorny came very highly recommended to us as well. We had never thought to go out to Mayo, but wanted a second opinion and Dr. Nagorny’s office was very very helpful and accomodating. Good luck and hoping to hear good things…
My sister also lost 35 lbs in the 6 weeks after her diagnosis. It does help to eat very very small amounts every half hour or so, grazing not meals. When even this wasn’t working the drs. gave her appetite enhancers (metase something like that, not sure) and that really worked. It even worked too well–she felt like eating and ate too much, her stomach had shrunk so much that it couldn’t handle it. In any case, as the bile flows more, her own appetite has seemed to kick in also. Good luck in any case and here’s hoping for good things only.
I can sympathize. My sister detested them and had them less than three weeks. She’s been sleeping ever so much better since they did the reversal too. Will your drs do it for you? I hope so. Best of luck and keep up the wonderful sense of humor. The Lord knows that bile drains and stents sure aren’t all that humorous at all.
My sister had drains put in after the drs determined that her liver could not be resected. They kept the drains in and open for a week and then reversed them into stents all inside. We’re hoping for good things, no infections and clogging etc. Did anyone here have better or worse experiences with stents vs. catheters?
I can second nancy’s endorsement of Sloan K. in NY for liver resectioning. Dr. Jarnagin and Dr. Fong are tops in the surgery dept. They also have a very very good IR dept. for the stent and catheter situations. Best of luck wherever you go and here’s hoping and praying for good things.
My sister’s first symptoms were jaundice and itching and the community hospital GI guy put in a stent. Well, now 5 weeks later, that stent is infected and causing major problems and the cancer center we are in were not very pleased with the job he had done. I think that each case is individual and that if the tumors are large and problematic, you will need an experience IR guy (or gal) to the proper job. Sorry to hear about your vacation being cut short and … Chin up, and we’re all hoping for good things.
On another cc website, I read of a woman who had cyberknife treatments after a liver resectioning. Try posting something to Leonard from Los Alamos California on Cancer Compass.com. He is very knowledgeable and helpful.
I also don’t think that cc can be diagnosed by ruling everything else out. Not sure 100% but I’d certainly get another opinion- You’re close to pittsburgh try there I think there’s a Dr. Yeo there.
Yes that is exactly what I meant when I was describing the frustration we had in the Cleveland Clinic. Now I’m not knocking them- it’s a first class hospital.. but their team system leaves the patient often uninformed if not downright confused.
I remember my sister in law joking with each person so are you from the blue team? the red team? Which team are we on? Oh no the guy says we’re the orange team, the teams change on the first of the month. She was joking and the poor resident was talking seriously…
Well good luck and all the best wherever you are.
My sister’s itching didn’t stop when a first stent was put in. It was only when they put in a biliary catheter that the terrible itching stopped and her billi started to go down. Even if one dr. said it’s not operable, go for another opinion, preferably to a large teaching hospital type of place. I don’t know where you are, but in NY, Boston, Mayo Clinic, Pittsburgh, UCLA they have drs who know Klatskin’s well. It is a rare type so if you are in a typical small city type of hospital they’re going to throw up their arms. Try to first get your dad stabilized (catheter or stents that work) and then work for a really informed prognosis.
Ha Ha what I meant by the giblet approach was that they took each body part for its own problem instead of looking a the patient as a whole… but I had a laugh so thats worth
My experience with the cleveland clinic was not cancer related. However, my brother in law was ill for many years and was in both places. My sister in law’s main complaint against the Cleveland Clinic was what she called “the giblet approach”. Because it is a huge teaching hospital there are many teams that deal with different parts of you and you rarely have that overall picture that is so important. I would just encourage you to ask if you will be in the CC who will be in charge of your care, pre-op and post-op if you are in for surgery and for the oncology if you have follow up needs. Its important not to be dragged into the system without being in one dr’s immediate care.
Good luck, Belle.Thank you all for your postings. Dr. Journigan is my sister’s dr. and we’re hoping and praying for good things. She has an infection now… even before surgery… so like I say we’re hoping for good things. Thanks again for all the suggestions and tips because all the little and big things add up. Thanks.
