grsharp

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 32 total)
  • Author
    Posts
  • in reply to: cholangio inherited? #95385
    grsharp
    Member

    I had never read that it might be inherited either. The reason I ask was because of a solicitation for money to do a study to see if it is inherited. I believe it can thru this site.

    in reply to: On The Cholangio Road #94690
    grsharp
    Member

    My wife’s journey down the Cholangio road came to an end recently when she saw an exit that read TO HEAVEN. She took it without any reservation.

    God speed to each of you sojourners on the Cholangio road. May you find the exit you are seeking.

    in reply to: It must be March… Bad news #94195
    grsharp
    Member

    Kris, my wife took Keytruda and it was paid for by Medicare. She was not in a clinical trial. However, it did no seem to help her. CA19-9 went from 500 to 6300 during the 6 months she was on it.

    How do you arrange a phone consult with Dr Javle?

    Wishing You Well,
    Ben

    in reply to: Types of Immunotherapy #94503
    grsharp
    Member

    Link doesn’t work for me??

    in reply to: nausea and diet #94477
    grsharp
    Member

    Thanks, great info.
    Will see if she can tolerate the ginger.

    in reply to: Guardant 360 #94469
    grsharp
    Member

    Thanks Marions.

    My wife had 4 failed attempts to get a positive biopsy before surgery was preformed and a positive diagnosed was made. However, the amount and or quality of the tissue was such that only the most basic genetic testing could be preformed. No abnormalities found.

    Her recent CT scan, done about 3 weeks ago, revealed no changes in her Hilar tumor but did note that a peripancreatic node had increased in size from 1.4 cm to 1.7 cm. Her recent blood work (1 week ago) was ok with all liver enzymes and bilirubin in range. So far the cause of her symptoms have not been revealed by testing.

    After registering on the Gardant360 web site I was able to determine that the testing was completed and returned to Vanderbilt on 3/13/17. So I am following up with doctor to get results.

    Wishing Yo Well,
    Ben

    in reply to: REMINDER! Conference 2017 starts now! #94057
    grsharp
    Member

    Any word on CCF video release?

    in reply to: Treatment Has Begun // Week 1 #93400
    grsharp
    Member

    Joe, I have used shark liver oil to raise my platelets. (Do a google search)
    I do not have cholangio but my wife does.

    She started on gem/cis for 3 infusions but stopped because liver enzymes too high. Later did radiation plus 5FU. She has now been getting an infusion of Keytruda every 3 weeks for past 6 months. She was diagnosed 11/2015 and has good quality of life up until the last few weeks. She is currently experiencing nausea and fatigue. Doctor started her on 60MG prednisone daily for 7 days to see if it will reduce inflammation as well as her liver enzymes. She has only been on it for 2 days but already feels better.

    Although Keyrtuda is not approved for cholangio it might be an option.

    Wishing you and your mother well.
    Ben

    in reply to: Keytruda #93053
    grsharp
    Member

    The cost will depend on if you have insurance that covers it. If not, you may qualify for discount from Merck depending on your ability to pay.
    I believe the retail price is about $25,000 per infusion.

    in reply to: REMINDER! Conference 2017 starts now! #94051
    grsharp
    Member

    Why is it so hard to listen/watch the conference? The one link I found above says it has expired?? AM I missing other links listed here on CCF?
    grsharp

    in reply to: Cannabis Oil and Cholangiocarcinoma #23508
    grsharp
    Member

    Since Tn has not approved the use of medical marijuana all I have access to is something like the Charlottes Web product which can be ordered from the web.
    It appears to only contain the CBD portion of the plant.
    Anyone here using it? Results?

    in reply to: Keytruda reaction #93478
    grsharp
    Member

    My wife has had 6 infusions of Keytruda and has had no fluid accumulation problems.

    in reply to: Good Scan Results – Diagnosed 2 years ago #93260
    grsharp
    Member

    Carla, my wife was diagnosed one year ago and was first treated with gem/cis. She then had radiation with 5FU and is currently taking Keytruda now for past 3 months. Her hilar tumor (tumor in/on right and left liver duct at junction with main liver duct) is stable and she feels well.

    Since there is no know cure nor no know cause, she too is taking many of the same products your husband is using, including high Ph water. Since medical cannabis is illegal in Tn I’m not sure how to get access to it.

    Since medial science has yet to identify the correct bullet to shoot at CC, I just wanted to second the idea of shooting all the bullets in the magazine in hopes that one or some combination will be effective.

    We are grateful to see another Christmas.
    Ben

    in reply to: Gem/Cis – Weighing Options #93094
    grsharp
    Member

    My wife had 4 infusions of gem/cis over a 6 week period. She had no nausea, hair loss and only minor fatigue. She did take nausea meds with the infusions and for a couple days following infusion as a preventative.

    There was a small amount of shrinkage in her Hilar tumor.

    She has since done radiation along with 5FU. This only side effect was some serious fatigue that started during the 4th week.

    She is 2 weeks post her 1st infusion of Keytruda. She has only had minor side effects so far. She will get an infusion every 3 weeks and imagining in 2 months to see its impact on her tumor. She has no known metastases.

    Wishing you and your mom well.
    Ben

    in reply to: Successful vs Unsuccessful Biopsies #92901
    grsharp
    Member

    My wife had 5 failed biopsy’s. Finally had to do an open surgery were they actually cut into the liver and get a sample. Even then the sample was insufficient to do more than very limited genetic testing.

Viewing 15 posts - 1 through 15 (of 32 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation