grsharp
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Mrucci, how has the rad and Xeloda treatments worked out for your husband? My wife is scheduled to start radiation and 5Fu (which is, I think the same as Xeloda except it is an IV rather than oral) on 4/25/16. Incidentally, we are in Nashville tn.
Lainy you say,”She asked me if it ever showed on my LABS that I was short of anything and I said never.”
Did your doc test you for any vitamins? A,E,D,C,B or sulforaphane?Doctors ususally only recommend things that have been thru clinical trials which can cost a billion dollars or more. SInce a natural product can not be patented there is no fininical incentive to do so.
Are there snake oil salesman out there? Sure.
However, I have discovered that the standard of care for cholangio leaves a lot to be desired. Or maybe there are some cures, or non cures, that offer long term survival with good quality of life. If so, can someone point me to them…PLEASE.I have t/w oncologists at both Vanderbilt and the Sarah Cannon institute and all they have to offer is the standard of care of gemcitabine/cystplatin or radiation and 5FU. Anyone here had good long term success with ether of these?
They say maybe they can offer an immunio therapy trial after my wife has failed their standard of care treatments. By then she will likely be so sick and her immune system so damaged and weak that she will be less likely to respond.
The way the current cancer treatment system just dosnt work well.
Here is a link to a Harvard graduate with brain cancer that is alive 18 years after his doctors said he would be dead in 6 months.Thanks Catherine,
We, don’t know type radiation yet. We talked to radiologist and mentioned using spheres but she said because it was difficult to “see” the tumor (perihilar) she would not know exactly where to place them.
Wishing You Well,
GrsharpHave there been any conference reports posted on this site yet? If so, I don’t know where to find them.
Thanks,
grsharpLooking forward to any new info learned at meeting.
Basically the Oncologist will meet with radiologist next Tuesday to discuss options. Her thought is that my wife should have 5FU and radiation with the hope that the tumor involving the right lobe can be shrunk so that the left lobe can be removed. She thinks 30-50% chance of that happening. Otherwise she is not appear favorably to any of the newer immune boosting (Keytruda) drugs since evidently none have been approved for CC.
My impression is that 5FU has many side effects and is not very effective for CC.
Blessings
GayleHope someone will provide some highlights of what’s new.
Meeting oncologist tomorrow for treatment discussion. Where will new info be posted?
grsharpMatt, thank you so much for responding.
Did you have specific genetic markers that made you a candidate for Keytruda? If so, can you tell me which test or company/institution did the testing? Is it working? Cost?Dr at Vanderbilt did open liver surgery on 1-18-16 an obtained a sample that confirmed cholangio. (This was 6th attempt to get positive biopsy)
All we have heard for doctor is that it was positive and that we need to wait 2-4 weeks while liver heals before starting any treatment.
Julie, your unexpected prognosis is encouraging to all of us
I had not heard of Foundation One. This makes me wonder what questions I need to ask my wife’s doctor about genetic testing as well as other test that might not be normally performed at Vanderbilt. Any suggestions?
Her open liver biopsy is scheduled for Monday. (Six other attempts have all falied…all came back negative.)Grsharp
My wife is scheduled for an open liver operation on Monday to try again, for the 6th time, to secure sufficient tissue to identify exactly what the tumor it is that is that has blocked the left and right liver ducts where they join the main duct.
Are there others here that have had so much trouble getting biopsy to sho CC?
Blessing to All,
GrsharpMarions,
I assume that they have not identified a carcinoma. Since all we are told is that the tissue samples were negative.
GrsharpMet with Dr at Vanderbilt to discuss their failed attempt to get a positive biopsy. This is the 5th attempt. He says next step it to do open surgery on my wife’s liver in order to get a tissue sample that will actually show that she has cholangio.
He again reiterated that a positive bx needed before treatment.
Because all attempts have come back negative I have looked on internet and found that there are certain very rare cases of something called intraductal papillary neoplasm and intraductal
tubulopapillary neoplasms.So naturally I’m beganinnig to wonder if thses could be a possibility.
Any info or experience with these by anyone?
Grsharp
I don’t see much info here on radiation. The oncologists says with radiation lower doses of chemo can be administered.
Can Keytruda be used together with chemo and perhaps radiation?Question regarding genomic testing. Does that mean testing of the tumor itself or just genetic testing in general? Since 4 tries to get a positive biopsy sample have failed I’m not sure how we can get testing on tumor itself. ( We haven’t gotten work from pathology regarding last biopsy)
Marions, we haven’t asked why a positive biopsy is needed. I guess it just seemed normal that you would need to have a positive biopsy before starting treatment just in case it was not cholangio.
But is also makes sense that if you are 99% sure then why wait.
She had another attempt at a biopsy yesterday (the 1st one at Vanderbilt). The Dr said he took a needle sample thru the stent, a brushing and a sample with forceps. We should hear something in 3-5 days.
I saw on this site that someone had good results using Keytruda. Does anyone know if you have to be in a clinical trial to get Keytruda now?
