Gallbladder Cancer 2023 (All Stages)

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  • CaliforniaPatricia
    CaliforniaPatricia Member Posts: 40 Member
    #82
    https://csn.cancer.org/discussion/comment/1710567#Comment_1710567

    (I'm not sure why ACS won't let me edit the post you read, so there are some typos, for which I apologize.) You certainly have had a rougher time than I've had. It seems we are both facing the end-of-life phase. I see that Xeloda is a brand of capecitabine, which is an alternative to gemcitabine (what I was given) as the current standard of care, though gemcitabine is usually coupled with cisplatin or, sometimes, another platinum drug. I read that patients receiving capecitabine are screened for PT/INR (blood coagulation) and their intake of Vitamin K (found in leafy green vegetables such as spinach and cruciferous vegetables such as broccoli) is closely monitored. Did you develop the blood clot despite taking these measures?

    I'm very frustrated because the delay in treatment is totally unacceptable. The CT scan that showed peritoneal carcinomatosis (cancer metastasized to the peritoneum) was done 2 weeks ago. The oncology team's decision that I was not a good candidate for HIPEC surgery but might benefit (live a little longer) with a combination of chemotherapy and immunotherapy came 8 days ago. The meeting with the principal investigator of the new clinical trial was 4 days ago. They are waiting on the release of the latest informed consent agreement document so that I can read and sign it. Then there's screening with the oncologist going through the long list of criteria. Then there's a CT scan to see where the cancer shows up now and an ECG to check for a prolonged QT time. My estimate is that I cannot begin for another 2 weeks, making it an entire month for an aggressive cancer to enjoy no treatment. This is a disadvantage of being part of a clinical trial. A new drug can't be tested accurately if the time between diagnosis of an aggressive cancer and start of treatment is 4 weeks when it would be started within a week if it were an established treatment.

  • erickfire1
    erickfire1 Member Posts: 1 *
    #83
    https://csn.cancer.org/discussion/326269/gallbladder-cancer-2023-all-stages
    https://csn.cancer.org/discussion/comment/1706848#Comment_1706848

    I am so sorry to see so many people suffering with this awful disease. My husband was diagnosed with stage 3-c gallbladder cancer and paraneoplastic encepolistis in August 2023. He was fine one day, and the next day he could barely move. I took him to the ER 2 times and they told us he was just fine. On the third visit, the ER Dr. finally said, there is something going on and you are not going home until I figure it out….we found out 2 days later through a biopsy, that he had the very rare gall bladder cancer, but he soon became comatose, unable to talk, feed himself or communicate correctly. He became very combative and they didnt know what to do with him. He was finally diagnosed with the para neoplastic encephalitis , but no one had treated a patient like this before… IVIG helped for a bit, but when he was able to go home, after 8 rounds of chemo and 10 rounds of radiation, we were basically told to put our affairs in order. I just couldn't stand by and do nothing…. so I called the Mayo clinic and they were very interested in his case, so we went down there. We found out his tumor was a neuro endrocine tumor, which caused the para neoplastic encephalitis. The surgeon felt he could operate safely by a certain date, and he did. He took the gallbladder, 2 sections of the liver and 7 lymph nodes, one which was still cancerous. This was on April 12th 2024.

    He did very well after surgery, other than feeling tired and weak. He went in for his 5 week PET scan and they found cancer again. His oncologist thought this may be the case because, his para neoplastic symptoms did not go away. It usually means cancer is still present. So, my husband is starting another 4 rounds of chemo and possibly radiation again. His spirits are good, but his mind is not normal. he has bouts of rage and not remembering things and he takes it out on me. We have been married for 41 years and I will care for him no matter what it takes. this cancer is an evil thing .

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