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  • in reply to: New Diagnosis #14207
    hansg
    Member

    Hi Amilcar,
    If you haven’t already, I’d suggest you meet with Dr. Gold at the Swedish Cancer Institute on First Hill. From my research, he is the most experienced in the NW dealing with CholangioCarcinoma.
    -Hans

    in reply to: fever between chemo treatments #14185
    hansg
    Member

    I had a fever at the end of my 3rd cycle of xeloda + gemzar…coincided with what seemed like bronchitis in my lungs. Turns out I was suffering from pneumanitis (spelling?) which about 1% of people get as a reaction to gemzar. So now I am off the gemzar and we are doing a cycle of prednison to clear out the lungs. They believe the fever was due to the lungs and the pneumanitis as well. They were able to diagnosis this via the ct scan based on the view of the lungs so you might want to ask about that.

    in reply to: Got the Rash from Sorafenib #14069
    hansg
    Member

    Hi Caroline,

    In my case, I had problems with the itchy scalp and also red/dry rash on my face. These were not considered sufficient to cause me to drop my dosage. However, interestingly enough, later when we did have the problems with elevated liver enzymes and did reduce the dosage by 50%, the scalp issues were nearly fully resolved.

    In my case, Benedryl was the main RX we used to treat the scalp itch.

    Hope it helps! Stay strong!

    -Hans

    in reply to: Experiences with Sorafenib? #13759
    hansg
    Member

    Hi Caroline,

    After comlpeting 8 weeks on the Sorafenib trial we unfortunately found that my tumors had grown and subsequently have dropped out of the trial. We are now 1 week into standard treatment with Gemzar + Xeloda. So for my body, it seems that Sorafenib as a sole agent was not a great solution and hopefully for your body you will find more encouraging results.

    If you start the trial, please feel free to email me to exchange notes about what you are feeling, etc and I can let you know if I had similar feelings, etc. Note that in my case we had to adjust the dosage down because it was too strong initially for my body to handle (overtaxed some of the liver enzymes, etc).

    Good luck!!!!

    -Hans

    in reply to: What do I expect #13816
    hansg
    Member

    We met with Dr. Andrew Ko at UCSF. He is an oncologist and was recommended by Dr. Fisher (Dr. Ko actually did his residency and/or fellowship at Stanford). Also Dr. Bergland (sp?) was another name he recommended among the oncologists at UCSF.

    Good luck!

    -Hans

    in reply to: Long, but worth reading #13819
    hansg
    Member

    Thank you for sharing Dette!

    in reply to: What do I expect #13814
    hansg
    Member

    Hi Sarah,

    If you are at Stanford now, the easiest place to get a 2nd opinion would be UCSF. The doctors at Stanford may be able to give you a name of a doctor there to contact. Did you see Dr. Fisher at Stanford?

    -Hans

    in reply to: Experiences with Sorafenib? #13757
    hansg
    Member

    Hi Stacie,

    First consultation was at Stanford with Dr. Fisher. He proposed starting with 3 cycles of Xeloda (which they said is the oral pill form of FU5) and Carboplatin. His attitude was very much – let’s see if we can get this to respond / hold steady and then see what comes available in the next 6 months that might be more promising treatments.

    We then were able to arrange a quick 2nd opinion at UCSF with Dr. Ko (we were told that Dr. Ko and Dr. Bergland were the main CC folks at UCSF — but I’ve heard others suggest that Dr. Vernook is the liver specialist…so not sure why he wasn’t suggested to us). Dr. Ko proposed Xeloda + Gemcitabine (sp?). He was a really nice guy and seemed optimistic about finding ways to live with this for a long time as a chronic disease.

    Finally we came to Seattle to Swedish Cancer Institute where we were able to meet with Dr. Gold. He said that they just opened the Bay 43-9006 clinical trial for enrollment (Swedish’s review board had just confirmed their participation the week before) and that since I hadn’t started any previous chemo treatments, I was eligible to enroll in the trial.

    The protocol calls for 800 mg of Sorafenib per day (2 pills in the AM, 2 in the PM) but since my liver enzymes were elevated at our test in week 2, they pulled me off and then reduced the dose. So far I think the side effects are tolerable — mostly just some dry scalp / itchy for me and body aches. I think the aches will get better (at least they did during week 2 when I first started on the drug). My main “pain” cause at this point is the large primary tumor in my liver (which is the subject of my other post regarding embolization). I’m hoping to talk with Dr. Gold about the options for pallative treatments so I can be more comfortable while we wait to see if the Sorafenib is working (we’ll do our next CT at end of Feb).

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