Help…Advice…Thoughts…Positive Energy…
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Being told my platelets were 71K and they might have to stop Chemo the next visit I hit the internet and decided on Pomegranate juice (2 glass per day) and Papaya Leaf tea (2 cups a day and with a little honey ok). The next week my platelets were 165K. I don’t know if this did anything. I also rested, laughed and got more exercise.
Tell your dad Hi and to keep up the good fight
Janet
ksully…….I feel for your parents and for you as well and wish with all my heart that beginning now your Dad is tended to by physicians familiar with this cancer.
I sent you an e-mail to the address provided by you.
Hugs
MarionThanks for your responses. They are greatly appreciated. I’m looking into the second opinion process at UCS.
Marion, I also read my parents your story and that gave them hope when they were feeling discouraged and defeated. Thank you so much for sharing!
Hi-
Welcome to the board. I’m sorry about your Dad and that you had some doctors who caused delay in treatment. As Marion said, very important to be treated where they know CC and second opinions can be valuable. Although not all will have the same results, my mother is now in remission with no evidence of disease after having Y-90. She did 3 cycles of GEM/CIS, and then two Y-90 treatments (Feb & Nov 2014). For the second Y-90, she took xeloda before and after. Additionally, I know the doctor gave her a “high dose”. Now they have us coming back in 6-months for scans.
I wish you the same success for your Dad,
Catherineksully…..welcome to our special group. I am sorry to hear of all your father has been through. Given the history of developments I would make sure to have your father’s case evaluated by a tumor board in a center treating a high volume of cholangiocarcinoma patients. In Southern California and for our cancer in particular, you will find these type of specialists at USC.
Hugs,
MarionOkay, hi…here’s my story, or my dad’s story, or actually, our journey…
This is a first time post with hopes of anything…
My dad is 64, developed blood clots in his legs in last October, went into the ER Christmas morning to discover the clots traveled to his lungs. The doctors were going to stop there, but we insisted on additional scans due to the intense pain in his lower right lung. Additional scans showed that his gall bladder was blocked; so it was subsequently removed. After surgery, they saw a mass but the surgeon *thought* it was surgicel leftover from the surgery, which was then thought to be an abscess, which was then drained and…4 months later, numerous hospitalization, and finally switching hospitals, my father was finally diagnosed with intrahepatic cholangiocarcinoma in the medial section of his liver. After the hospital assuring us it was not cancer.
By this time the tumor had grown in size to aprox. 10.2 cm and was too big for surgery. He received 3 cycles of cis/gem with a mild response to 8.8. cm, which encouraged the team to continue chemo for another 3 cycles. At his last scan, his tumor was stable but still too big for surgery. Right now, they say that chemo/radiation is not an option due to a weird blood reaction to the chemo (sudden drop in platelets after the 6 cycles). For localized options, they say that proton therapy is unlikely due to the size. TACE is not ideal because there are too many arteries feeding it but said they could consider segmental TASE. Right now, they are recommending, sir spheres Y90.
These are our questions:
Does any one have any thoughts on this current treatment recommendation? Is there anything that we’re missing? What do we need to ask? What do we need to know going into this treatment? Given his history, are there any other thoughts about alternative treatments or treatments that we should ask his treatment team about? Has anyone had a successful surgery after this treatment?
Any other thoughts???
Thank you for you, for your time, for your attention, and your community!
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