dukenukem

Don’t take this personally Wayne, but I have issues with some of your statements.

From what I’ve read on this site, the majority of patients have metasteses which rules them out out at step one. Therefore, I don’t think oncs are hiding anything from patients.

When you read the stories on this site of long-term survivors, they seem to be primarily those who were detected before mets and were able to have resection(s). Even some of those were only temporarily successful. Clearly, a new liver into a body without mets provides the best chance for long term survival. But there just aren’t that many of those. Us “old people over 60” who were not discovered until Stage IV are just SOL. This is one thing I am hoping the Registry will shed light on: just who are the long term survivors and what do they have in common.

I found a summary of the article but it looks like you need to spend $35 to get the full article. Maybe Gavin can find it for free somewhere. Here is the Reader’s Digest version:

“We collected and analyzed data from 12 large-volume transplant centers in the United States. These centers met the inclusion criteria of treating 3 or more patients with perihilar cholangiocarcinoma using neoadjuvant therapy, followed by liver transplantation, from 1993 to 2010 (n = 287 total patients). Center-specific protocols and medical charts were reviewed on-site.”

“The patients completed external radiation (99%), brachytherapy (75%), radiosensitizing therapy (98%), and/or maintenance chemotherapy (65%). Seventy-one patients dropped out before liver transplantation (rate, 11.5% in 3 months). Intent-to-treat survival rates were 68% and 53%, 2 and 5 years after therapy, respectively; post-transplant, recurrence-free survival rates were 78% and 65%, respectively. Patients outside the United Network of Organ Sharing criteria (those with tumor mass >3 cm, transperitoneal tumor biopsy, or metastatic disease) or with a prior malignancy had significantly shorter survival times (P < .001). There were no differences in outcomes among patients based on differences in surgical staging or brachytherapy. Although most patients came from 1 center (n = 193), the other 11 centers had similar survival times after therapy." “Patients with perihilar cholangiocarcinoma who were treated with neoadjuvant therapy followed up by liver transplantation at 12 US centers had a 65% rate of recurrence-free survival after 5 years, showing this therapy to be highly effective. An 11.5% drop-out rate after 3.5 months of therapy indicates the appropriateness of the MELD exception. Rigorous selection is important for the continued success of this treatment.” Carefully read the last sentence. This is also referred to as “cherry picking” or “picking the low hanging fruit”. I could not find a reference to the 12 centers. For those fortunate to have discovered cc while it was still small and had not metastasized, count your blessings. We are happy for you. Duke

My onc moved me from cisplatin to carboplatin after only one round because of ringing in my ears. I went through eight rounds of carbo/gem and have had five rounds of gem only.

I now have hearing aids. Good for normal conversation but challenged in high noise environments. Also, I’ve found that some “more experienced” individuals (aka senior citizens), have trouble processing sounds in their brains, especially in loud environments or people with accents or who mumble. I’m like two or three words behind and can never quite catch up.

Duke

You definitely need a second opinion. Even my doctor, who has never treated CC, has a Plan B (Folfox) and a Plan C lined up. There seems to be a standard set of protocols out there for a base treatment plan that your Onc seems to be missing.

There is tons of info on this site from patients and from others who continually scan websites for treatment plans (and Gavin still seems to have a day job and a life). I pick and choose and send stuff to my Onc to get her to think outside the box.

Duke

You are NOT alone. We are here to help in any way. And, as Lainy can testify, Paul will find ways to reach you, just listen and look for them.

Duke.

Jason –

Please supply a link to “… the famous gem/cis vs. gem study and not a study of gem/cis vs. no chemo (e.g. best supportive care).” Or maybe Gavin can.

My Onc said six months with no chemo but made no promises with chemo. As others have said in numerous places, the 50%/two years, 2%/five years is old data. Which is one more reason the Foundation is begging for responses. There are too many variables besides treatments that have a significant impact on survival. Fortunately, I have tolerated chemo well for 13 rounds so far.

“We don’t come with an expiration date!” Lainy/KrisV/KrisJ

My choice was to start chemo and to continue with it as long as it works (which it is after 11 months). My Onc has a Plan B (Folfox) and a Plan C (join a Phase 1 trial) in mind if it no longer works. Also, she dropped the carboplatin temporarily. I can always go back to the carbo/gem treatment before Plan B.

I’m with Carl – go for it for as long as Norbert can tolerate it.

Duke

Let me offer a minority opinion on the dusting (also a male perspective).

It makes you feel good in two ways: first, it shows you are strong enough to function; second, cleaning itself is good for you. Both are parts of your recovery process.

Having said all that, this does not mean you should overdo it. Everything in moderation. Sometimes your own prescription is the hardest to take..

Duke