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  • in reply to: if Chemotherapy is NOT Working, what can be done. #94153

    My wife was on both Cisplatin and Gencitabin. Now she is off Cisplatin as the Dr said it is dangerous to keep with that. She is on a trial drug as well – Coplansilib

    What she is doing that really seems to help is work hard at diet, supplements and detox
    For Diet – primarily organic fruits and vegetables and some organic oats
    For Supplements – KyoGreen drink mix, Perfect 7 Intestinal Cleaner, HCL with Pepsin, Zinc, Fish Oil and Vitamin C
    For Detox – a coffee enema two times each day.

    We have one foot in the naturopath world and one foor in conventional medicine

    in reply to: Nutritionist/Dietitian #94337

    My wife is stage four and is getting better as she is focused on an organic fruit and vegetable diet. She also has a list of supplements including a green drink 3x every day. We think this, as much as the chemo and trial drug, is making the difference!

    in reply to: Survival…Please tell us your latest milestone #64790

    Here is a “What’s Working” update. My wife, Barb, was found to have cancer in late July 2016. Through the process of elimination or exclusion, the various docs concluded it was ICC.
    As I have mentioned earlier, she was offered to join a phase II clinical trial at Moffitt Cancer Center in Tampa Bay with Dr Richard Kim and team. We started early Sept. Barb’s tumors were ‘too numerous to count’ in the liver and lung primarily. They are measuring a couple of the larger ones to track progress – and here is that progress…

    Date 8/23/16 11/15/16 1/17/17

    Confluent central mass 7.5 x 12.6 6.2 x 9.9 5.9 x 8.4

    Right hepatic lobe mass 4.9 x 6.4 4.4 x 4.9 3.0 x 4.2

    The trial drug is Copanlisib (BAY 80-6946) and the chemo drugs are Cisplatin and Gemcitabine. The Protocol number for this trial is MCC # 18435
    More at

    Barb also has added supplements such as Kyogreen drink mix and several other things AND is doing one or two coffee enemas every day. This is not part of the trial protocol as you might imagine but we believe it is part of the good results she is getting. Would love to hear any feedback, thoughts, comments. God bless you! Brian

    in reply to: Hi – new to the site. Just likely diagnosed with IHC #93028

    Hi Marion and All,
    Here is what I have found out regarding the available clinical trial:

    It is Phase II

    It is to study coplanlisib (BAY 80-6946) in combination with gemcitabine and cisplatin in advanced cholaniocarcinoma.

    The Protocol Number is MCC# 18436

    Moffitt Cancer Center is the sponsoring hospital and Dr. Richard Kim is the Study Doctor

    Quick Summary: Coplanilsib is an experimental/investigational medication that blocks the enzyme Phospho-Inositol-3-Kinase (PI3K) that is normally important for the growth of tumor cells

    Any thoughts?

    in reply to: Hi – new to the site. Just likely diagnosed with IHC #93024

    These are good questions regarding the trial and I will ask them. I know that the pathology leaned strongly toward IHC but the markers were not 100%.
    I will ask about Phase – looks like at least a Phase II trial
    It is at Moffitt but I do not know if it Is an institutional trial.
    I will also ask about the trial ID?

    in reply to: Hi – new to the site. Just likely diagnosed with IHC #93025

    The tumor board at Moffitt Cancer Center in Tampa has asked if Barb would like to be part of a clinical trial. In addition to the std chemo drugs of gemcitabine and cisplatin, they are combining a third chemo drug.
    Note – Barb has ‘too many masses to count’ in her liver so chemo is the option.
    Any thoughts on being part of a clinical trial?

    in reply to: Hi – new to the site. Just likely diagnosed with IHC #93019

    The team at Moffitt is bringing Barb’s case to the tumor board at 7 AM tomorrow (Thursday) to evaluate the CT, PET, MRCP, pathology and bloodwork. We are looking forward to their thoughts and I will be sure to share them.
    Thanks for speaking into this and sharing your counsel.

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