marions
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positvity…..this type of testing requires tissue retrieval via a biopsy.
Liquid (blood) analyses is available. I have learned that it can be quite accurate with stage III and IV as at this point plenty of cancerous cells circulate throughout the blood.
Hugs
Marionpositivity…..the physician is going safe, he is trying to avoid ascending cholangitis, which is very serious. We provide this link for overview: http://cholangiocarcinoma.org/biliary-emergency-information-card/
Keep an eye (daily) on your Mom’s temperature, should it rise above 101F make sure to contact the physician. Another sign to watch out for are riggers (body shakes), which nearly always is a sign of an impending infection.
Perhpas it’s time to bring up metal stence once more. As Gavin mentioned, it too can clog with debri and/or tumor tissue) but it can be cleaned out or often times a plastic stent is inserted into the metal stent.
Most likely your Mom’s physician is referring to the fact that the tumor will continue to grow and to a point when a stent is unlikely to drain the buildup of bilirubin. I think this is an unneccessary worry at this time.Hugs
Mariontaylor….my motto for those being treated for cancer is: if it helps you and doesn’t hurt you why not try it.
Everything seems to be moving along quite well. How is your MIL handling the current treatment?Hugs
MarionArapro….of course, a tidal wave of good wishes is heading your way.
Irinotecan is pretty harsh on the system, are you handling the current chemo better?Hugs
MarionNot good news, Brigitte. I heard that MD Anderson cut a significant amount of staff. Perhaps that explains their non-responsivenesss.
In any case keep bugging them.
Hugs
MarionNice to hear from you. Most people believe that palliative care is end of life care. That’s a misconception. Palliative care should be routine, no matter what serious illness. With this cancer one should take advantage of everything offered. It’s all about making the patient feel better, nothing else. And, one is not committed to. Patients have control in this. .
Hugs
Marionjoviony….thanks for checking in with us. Appears that everything is moving along minus the cisplatin side effect. Neuropathy unfortunately is a major problem, hopefully it will disappear after completion of treatment.
Not quite sure why the physician mentioned a six months wait following a possible surgery. As far as I know the window is is 4 to 6 weeks post surgery.Hang in there, you are doing great.
Hugs
Marionpositivisty…..would like to add to Gavin’s great response that stents are life savers. Don’t think anyone enjoys going through the procedure, but without opening the duct patients soon succumb to this cancer.
Has the idea of a metal stent been brought up?Hugs
MarionHappy to know you are takig advantage of the beautiful weather. Lainy used to remind that “live is for the living. Peter and you have gone through alot, enjoy.
BTW: I live in the San Francisco Bary area as well.Wanted to mention that the cholangiocarcinoma hilar region is treated with surgery as well. It’s a combined liver and bile duct resection.
Here is an article explaining in detail:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357124/Hope you and Peter can get out this weekend as well.
Hugs
MarionWhat we have witness on this board too few patients are offered palliative care, because there is a shortage of Palliative Care Specialists.
Take a look at this link:
http://khn.org/news/how-long-have-i-got-doc-why-many-cancer-patients-dont-have-answers/hopeseeker..there is no curative drug for our cancer, hence at one point drugs resistance will occur, which means the tumor will grow again or new nodules may pop up.
Then what?
A second line of treatment will be considered, consisting of either chemotherapy or radiation therapy or a targeted drug that directly kill tumor cells.Traditional cytotoxic chemotherapies usually kill rapidly dividing cells in the body by interfering with cell division. No additional testing is needed in order to receive a second line chemotherapy.
This is different for targeted agents, which can either block or turn off chemical signals to block or turn off signals so that the cancer cells no longer can grow and divide.
Targeted agents can change the proteins within the cancer cells causing cell death or stop new blood vessels from feeding the cancer cells.
Targeted agents also can trigger the immune system to kill cancer cells.
Cholangiocarcinoma does not have an approved targeted agent, hence in order to possibly benefit from a targeted agent patients must enroll in a clinical trial.
However, there is one exception. Only recently the FAD approved Keytruda for patients with unresectable or metastatic solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment.
These patients must have been identified with a specific biomarker referred to as microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). We don’t know the rate of occurrence of this biomarker in our patient group, but it’s estimated that approximately 5% of our patients have this specific biomarker.
All patients should have comprehensive DNA/Molecur testing, but as far as I know, testing for microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) is not automatically included, hence it has to be requested by the physician.
Personally I am most familiar with Foundation One, but there are other labs as well.
The tissue biopsy must be adequate in size for testing. Most institutions preserve tissue, but some patients must undergo an additional biopsy. In any case, the tissue must have been retrieved within a one year time span.
Resource: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm560167.htm
Hugs
Marionhopeseeker..There is no curative drug for our cancer, hence at one point drugs resistance will occur. When that happens, a second line of treatment will be considered. Therefore, it’s best to lign up the next course of action in advance, which could be a molecular targeted agent or another chemo drug. I believe that everyone should have their biopsy tissue tested for DNA/Molecular alterations, preferrably at diagnosis or at any other time.
Hugs,
MarionDaisy….so nice to hear from you.
We encourage patients and caregivers participating in clinical trials to communicate via the threads specifically provided for this purpose.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=14As the Phase III AG-120 only recently has started the recruitment process, it’s likely you are the first to begin the new thread.
The study is highlighted on our website: http://cholangiocarcinoma.org/claridhy-a-phase-3-multicenter-randomized-people-are-allocated-by-chance-to-receive-one-of-clinical-interventions-double-blind-neither-the-participant-nor-the-investigator-know-who-is-receiving/
This is the study ID: NCT02989857
Patients with advanced cholangiocarcinoma and an IDH1 gene mutation. This mutation is likely to occur in 20 – 40 percent of “intrahepatic” cholangiocarcinoma patientsDaisy, we will watch for your entry in the above mentioned thread, Gavin will highight it with what we call a “sticky.
We don’t yet have conclusive data regarding the efficacy of Keytruda, but the trials are ongoing and from what I have seen some have excellent results whereas others do not quite as well. Hoping for our experts (those with personal experience or those sharing on behalf of their loved one’s) to chime in and help us out.
Best of luck to your Mom and please keep us posted.
Hugs
Marion
