She is on actigall/ursodial, high dose. The supplements were something she would take two or three times a week max, never more than one capsule of each (most recommend two-three a day) and thats been months ago. Prior to the increase, she had been taking them in this fashion for over a year. FUDR t...

Dr K. emphatically does not believe chemo to be safe for dw with her current hepatic numbers. We havent done anything much at all and they have been slowly improving. Ercp/drainage/stents seems to be the only intervention treatment available for what they believe is secondary sclerosis cholangitis, ...

We have had ambiguous scan results. I usually send the scans back to the Professor. Hope to hear from him again soon. She has had only the xeloda treatment until now.

A planned ablation was scrapped due to the ambiguity. So I dont actually know with any certainty, yet.

Attachable self cleaning bidet with hot water hookup. Run you about 50-100 bucks, if you have a plumber hook it up (handy people can do it themselves), another 100. With good pressure you can even give yourself a colonic/enema, hands free. I think its a huge disservice that any bowel sufferer, for a...

We are still appealing, trying to see if we can get our out of pocket expenses recouped by insurance co. While we were able to get some statements from her docs that what we did was medically sound and the best choice, is there any other sources where we could get some reputable onc/surgeons who can...

She has been on the urso continuously ever since a few fudr's in. Rifampycin also most of that time.

My condolences on your loss and appreciation that you have the strength to continue on to try to help with our fight. We are seeing the docs, they appear to be heading in the direction of percutaneous catheter draining and contrast studying, if the numbers dont improve quite soon. If that does happe...

So hopefully the disease is under control. But her liver numbers have all jumped to the mid and high hundreds and bilirubin up to 6 and her eyes are yellowy. She has been having on off problems with them before but nothing like this. and she recently has her second bout of pruritus - which stranfely...

At MSKCC the surgeon was willing to perform a bilateral thorocotomy for my wife. At the time we were expecting high single digits each side. He said he would be avoiding the use of a wedge stapler and that he would expect minimal lung function loss. I think he was going to use a cauterizing tool or ...

I suspect you can do much cheaper same standard of care using private hospitals in the EU. US hospitals and medical fees are calculated with the expectation of massive writeoff insurance companies negotiate. The private payers needs to fight tooth and nail for any shot at the "real" pricin...

My wife suffered with the stent while undergoing folfox 2x and folfoxiri 2x until we went to sloan, saw Dr. Paty who recommended us to Dr. K and Dr. D, whereupon she had an initial sigmoid resection, placement of the HAI pump and three on the left from the liver. About 4months later, they did the ot...

Go to a place you trust, with doctors you trust. Usually it will be the oncologist. I dont get the trust vibe from you. You should have one. If you dont, you should cast about quickly to broaden your horizons. I would suggest the largest cancer center you can realistically frequently visit. Dont ass...

Well, we have come a long way. And its possible that there is no definitive visible disease at this point. CEA 1.6 two years ago was in the 500's. So what do we do now? There is a definite lack of perceived attention from Dr. K and others. Possibly due to us seeking treatment abroad, possibly unrela...

Well, we went to Dr. Prof. Rolle and did the right side. He removed 18 things, most were mets and three clear LN. We arrived on 12/15 and came back on 12/31 (a bit early) With near certainty, better then they could have done back home. Staff was nice and helpful. Take the sleeping pills if they work...

Thank you everyone for your encouraging and informative responses. The truth is, we are finding the prospect of overseas trips for week(s) at a time somewhat daunting. If anyone could chime in with a rough idea of what we may expect and some tips to go about it, that would be great to consider along...