New Wrinkle

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  • #94237
    spokanemom
    Participant

    Dear Kathy,
    I am so amazed by you working, parenting small children AND handling all the medical stuff with such a fun sense of humor! Thank you for sharing and hang in there,
    Victoria

    #94236
    mbachini
    Moderator

    Kathy,

    Wow, that is a lot to handle…….your positive attitude shines through your story. Regarding the brain mets……sometimes I wonder if it is more common than thought to be. I have known quite a few cc patients who were discovered to have brain mets. Their brains were scanned for clinical trial enrollment and follow up……patients not enrolled in trials rarely have their brains scanned routinely but only when symptoms arise. Just some food for thought, and my observation only.

    I am so impressed that you continue to work, that is amazing. Just out of curiosity have you checked into social security disability? Cholangio patients are approved immediately. I had no idea when I was first diagnosed, and just wanted to pass that info on to you.

    All my best,
    Melinda

    #94238
    iowagirl
    Member

    Kathy,

    Wow…..I can’t imagine what went through your head during the discussion phase as to what to do . Thank goodness you had a doctor willing to pursue the brain mets and go at it until they were done. Hang in there girl…..you’ve got good reasons to stick with this…..that 8 year old and two 6 year olds. Will be thinking of you.
    Julie

    #94239
    gavin
    Moderator

    Hi Kathy,

    Thanks for the update and wow, you sure have been through it all even more have you not with all of this new stuff, huge GRRRRR to brain mets. Yes they are quite rare with CC but do sometimes happen and here are what we have on the site regarding them if you want to have a read through.

    http://www.cholangiocarcinoma.org/punbb/search.php?search_id=240429163

    It does sound from what you have told us all that you have some sort of plan in place and I will keep everything crossed for you with the treatments. Please let us know how everything goes and no worries, this is the perfect place for you post your update!

    Hugs,

    Gavin

    #94240
    debnorcal
    Moderator

    Kathy,

    Thank you for posting your update. You have obviously been thrown a huge curveball, but are handling it in a calm, objective manor, which allows you to make the best and most informed decisions regarding your treatment options. I am beyond impressed with your resiliency. Sending positive thoughts for the complete eradication of your brain mets.

    Debbie

    #13078
    knfarrow
    Participant

    Greetings everyone! Not sure where to post this update as I continue on my wild and wacky journey. I was diagnosed with a huge intrahepatic cholangiocarcinoma in January 2015. They resected a 20 pound tumor with clean margins, but I did have two positive nodes. So, I have Stage IV ICC. I’ve been trough Gem/Cis, FolFox, and a clinical trial without relief. In January 2016, I started pazopanib, an FGFR2 inhibitor, based on my genetic testing and have had good response with some slow progression in recent months. However, I am 45 and still able to work and parent my three small children (an 8 year old and 6 year old twins).

    However, we have developed a new wrinkle. I had a seizure last Tuesday night due to brain metastasis. According to my oncologist, cholangio doesn’t usually go to the brain because people usually die first. Yay. So, I got admitted for seizure management and treatment planning and then discharged on Friday after being seizure free for 48 hours. After an uneventful weekend, I showed up yesterday morning for my gamma knife radiosurgery. Unfortunately, the double contrast MRI showed many more lesions than expected. After a long heart to heart, we went ahead with the gamma knife procedure. I had significantly more lesions than they typically treat with gamma knife, but the chances of residual neuro deficits (i.e. short term memory loss) with whole brain radiation were too high. Ultimately, my care team believes that this was the right choice. It just made for a very, very long day – about a 5 hour procedure.

    Today, I am tired, but otherwise ok. I now start a steroid taper and stay on the seizure meds. I will see my regular oncologist on Wednesday and likely start back on my regular chemo (pazopanib) at that point. These brain mets have probably been there for months according to the radiation oncologist, and I’ve have a relatively “indolent” course on the pazopanib. Since there isn’t anything else based on my last genetic testing, his opinion was likely to stay on the pazopanib. We’ll see what my regular oncologist says tomorrow.

    If I feel ok, I will plan to return to work at least next week.

    Talk to everyone soon!

    Kathy

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