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  • in reply to: Stan’s CA 19-9… 519, his emotional score -10 #34911

    Thanks MLepp! That expiration date comment made my entire day! A laugh to kick start my morning was really great! Thank you!


    mlepp0416 wrote:
    I agree with Lainy! Tom’s CA 19 is 336, down from 466 three weeks ago and his bilirubin level is 22.7 down from 24.7 three weeks ago. He is currently undergoing radiation for her reoccurance of a CC tumor 20 months after a left liver lobe resection.

    Never give up! Keep a positive attitude! No one has an expiration date stamped on the bottom of their feet or on their butt!

    This wonderful site has given me a lot of information and helps me to maintain a positive attitude – even on those days when being a caretaker to a very sick husband gets me a bit down.

    Prayers from Wisconsin coming your way.

    Go with God and KEEP KICKIN’ THAT cancer.


    in reply to: I need some suggestions please. #34828

    Ah! I’ve met with Dr. Fisher before, and I am considering attempting to get on his list of patients again.

    I did receive a phone call from my surgeon’s office at Stanford. He is the one who suggested the biopsy to my local oncologist. The local oncologist ordered the biopsy. My surgeon’s staff member indicated that normally when two physicians discuss and decide on a treatment or test, the physician coordinating the tests would then phone the patient. My oncologist missed that.

    Stanford staff indicate that a biopsy of the lung isn’t practical, that because the left lung rides on top of the liver, and near where the cut was made for the resection, that a biopsy of the area that also showed PET positive will determine if we’re still looking at CC or if another cancer has started.

    Wow… that was a run on sentence…

    So now I have some information and I don’t feel like I’m in limbo so badly. I am taking my little sister and my mom (two scrappy broads) to my next appointment with the oncologist on Monday. Then I’ll be letting the doctor know that he’s going to have to make sure that I’m in the loop when it comes to my care. Also, if I find that he is still giving me a feeling of disinterest, I’m going to start shopping for a new oncologist.

    marions wrote:
    I am wondering: The oncologist who did not identify your PET scan as positive, is he the same physician, who ordered a biopsy?
    Is the biopsy to determine metastases of Cholangiocarcinoma or, is there concern that it may be a secondary cancer?
    Also, how many CC patients has this oncologist treated and how have they faired. I think that this is a very important question to ask. I realize that you may not have many oncologists to draw from living in Chico but there must be at least one other with whom you could consult.
    Also, your records are at Stanford already. Have you thought of consulting with Dr. George Fisher? Dr. Fisher has extensive experience with Cholangicocarcinoma patients.
    Just in case, here is his info:

    300 Pasteur Drive
    Stanford, CA 94305
    (650) 498-5710
    Best wishes coming your way,

    in reply to: SSDI and Waiting Period #34201

    Good Morning Irene,

    During my 6 month waiting period, I was getting California State Disability. My “claim” on State Disability ran out 2 weeks before SSDI started.

    Hope that helps,


    in reply to: Newly Diagnosed #33101

    I think I may be able to answer at least one of these questions, though you should always keep in mind that your actual mileage may vary and all people will have different results based on their attitude and overall health.

    I just had my resection in June of this year (2009). They took 40% of my liver, my gall bladder, the bile ducts and one lymph node. Due to the location of a tumor on my liver that was close to critical arteries/veins they had to due an incision from the tip of my sternum to my belly button, they were unable to perform the process orthoscopically (sorry I can’t spell). I spent 5 days at Stanford Medical Center in Palo Alto California for this procedure.

    Day 1 I spent mashing the green button for pain meds.
    Day 2 I began walking laps in the hospital toting two IV cart thingys.
    Day 3 I was walking multiple laps with one IV cart.
    By day 5, I was still doped up, but moving very well under my own power.

    My surgeon had indicated that I would be in great shape in 6 weeks.

    It took me one week at home to be able to sleep through the night. I had a reaction to my pain med that made things really rough the first week home. Once I quit the oxicodone (night mares big time), I was an overnight success story.

    It was about 6 to 7 weeks later that I was able to lift laundry, ride a bicycle, get up from the couch without groaning and even got my driving privileges back. It has been 6 months now, and I still get a gentle reminder every now and then that I had major surgery a very short time ago.

    gtm2009 wrote:
    My wife was diagnosed with cholangiocarcinoma last Friday. We are in the process of talking to oncologists at Dekalb Medical Center and at Emory Hospital to determine the next step.

    Here are some questions we have so far:
    1) Assuming a resection is possible in her case, how long does it take to “recover” from the surgery. (We’re waiting on an MRI/MRA appointment).
    2) Is resection really a “cure” since I’ve read it can reoccur after the liver regenerates <- That's amazing, and apparently it regenerates quickly
    3) I am leaning towards the facility at Emory for her since it is a National Cancer Institute Designated Cancer Center. Has anyone else had any experience with the doctors and surgeons at Emory?
    4) If resection is a “cure” why do people have radiation/chemo done after surgery?
    5) We were told that radiation was not an option because of the possible damage to the healthy part of the liver. However I read that other people have had radiation treatments for this cancer. What’s the real story?

    in reply to: Gemzar side effects this week. #32808
    devoncat wrote:
    When I was not handling xeloda well, my landlord (a surgeon) was like GREAT. The chemos killing something! So there you go…


    That is a terrific way to look at it for sure Kris. Thanks :)

    in reply to: hair loss….gemzar cisplatin #29770

    I had some thinning on my chest, back and legs. (on Gemzar)

    My head held its hair (so far),

    in reply to: Gemzar side effects this week. #32806

    I phoned my oncologist today, and they suggested that I get some Benadryl cream. I picked that up and will give it a go this evening for the rash. For the “icky” feeling, I started feeling really decent by the end of the day but the oncologist staff did indicate that I can come by for a visit if “icky” sticks around past tomorrow.

    Thanks everyone!

    in reply to: pain and mental fatigue #32592

    Dear Kris,

    I’ve only been here a short time, but from the messages I’ve read… I feel as though I know you.

    I am grasping at what I might say that would make you feel a bit better today, and I’m coming up short. I guess the best that I can say right now is that you are in my thoughts and I hope that strength and courage makes it your way.

    All my best,

    in reply to: First Scans on Gemcis – Great News #32530

    That is just terrific news! Awesome!

    in reply to: Treatment Centers/Physicians #29907

    I was seeing Dr. John Keech as my oncologist here in Chico. He has relocated to Seattle. Terrific physician! I’m now seeing Dr. John Hayward.

    My surgeon is Dr. Brendan Vissar (as well as the student community) at Stanford Medical Center.

    in reply to: Greetings #32151
    Lalupes wrote:
    Hello Scarman – & a big welcome from me, too. I’m glad things are going well & am pleased the Gemzar’s tolerable (my sister’s due to start on it next week, too, so thanks for the tips to combat any queasiness.)

    All the best for your continued good progress.


    Just to add a little bit. They give me Zofran right before the Gemzar. That helps with the nausea the day of chemo. I also have Zofran in pill form to take when I need it, but I do find that good old ginger ale does it for me. There is still the feeling like… um… well.. if you ever drank too much of a certain alcohol… like rum… and ever since you get a funny feeling in your throat when you smell rum… that’s what the gemzar is like for me for about two days.

    I’m sure your sister will do terrific with the Gemzar,


    in reply to: Breast Cancer Walk Story #32158

    A terrific message to share, thank you so much :)

    in reply to: Greetings #32149

    Gemzar isn’t too horrible. It isn’t a cake-walk and does have some side effects, but I’m finding it pretty tolerable. For me there is some fatigue, and some VERY mild hair loss. I’m queasy for a day or two. Ginger Ale and ginger snaps seem to work for that.

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