Forum Replies Created

Viewing 8 posts - 1 through 8 (of 8 total)
  • Author
    Posts
  • in reply to: Are we out of options? #87558
    kingston2708
    Participant

    I’m a patient at MSKCC, too. I had the pump implanted, did the Gem/Ox seven rounds, FUDR in the pump. Nothing but good news, shrinkage in the one tumor I had in liver. Developed an allergy to the Gem (rash all over), so we stopped the GemOx and scanned again in 12 weeks. In that time, I developed tumors in my lungs and lymph nodes. Now I am stage 4. We did the genomic tests and I’m waiting on the results now. I hope you find your way. I’m looking into my options now, too. Not sure if I’ll stay with MSKCC as the travel is a big expense for me.

    in reply to: How much pain to expect with cholangiocarcinoma? #83865
    kingston2708
    Participant

    It was pain that led the doctors to my diagnosis of intrahepatic CC. Every time I ate, I was so nauseated I could barely sit up. I had mid-back pain on my left side; I was so itchy my skin was bleeding and bruised from all the scratching. Plus, I was so tired I could barely hold my head up after work (or even at work). All of those symptoms went away after I had a stent placed to allow the bile to flow again. Of course, the fatigue came back with chemo, but everything else has been kept at bay.

    Best of luck and if there is pain, please insist the doctors address it.

    in reply to: Lainy – Cancer Free #80582
    kingston2708
    Participant

    What fantastic news!!! Congratulations!

    in reply to: Nausea after stent placement? #79898
    kingston2708
    Participant

    Thanks, Marion. I plan on talking with the doc tomorrow to see what’s going on.
    Tara

    in reply to: port a cath #79891
    kingston2708
    Participant

    When I had my port put in, the nurse said to leave the dressing on for at least the first 24 hours. I actually removed it within those first 24 hours as I had a reaction to the adhesive on the tape they used. I haven’t had any problems with it since then. If they used the Dermabond on the wound, make sure you shower with your back to the water and don’t pick at it. Keep it as dry as possible. Hope this helps!

    Tara

    in reply to: Ready to join the discussion #77852
    kingston2708
    Participant

    Allison,
    I would love to chat with you sometime if you are up to it. I’m a 43-year-old Mom of a 6-year-old son who was diagnosed in Dec. 13. We tried resection, but my tumor had advanced from left lobe into right. Now I started Folfiri, like you. We could swap war stories. :)

    Tara

    in reply to: Just diagnosed this month #78165
    kingston2708
    Participant

    Thanks to everyone for the kind wishes. Had some great news from the surgeon today who thinks taking my entire left lobe and gallbladder might get rid of ALL of the CC. Of course, we won’t know until after pathology comes back after the surgery, but he said if we have no surprises in surgery, he’s feeling very positive. :)

    in reply to: Just diagnosed this month #78178
    kingston2708
    Participant

    Thanks for all the words of encouragement. I know that I am blessed to be in early stages and that surgery is scheduled.

Viewing 8 posts - 1 through 8 (of 8 total)