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  • #92710
    marions
    Moderator

    Joe…allow yourself to grief as with it comes the healing process.

    Hugs and love,
    Marion

    #92709

    Mom passed away on April 28, 2017.

    10 Months after finding the mass.
    8 months after biopsy confirmed ICC
    6 Months after stopping chemo.

    Ill post in the remembrance area and share the tribute of her beautiful life.
    For future readers I will come back and fill in the last medical/progression details from Jan – April when I can.
    Im having too hard of a time.

    #92708

    Update for future readers:
    I will continue to update this timeline of events in hopes that it helps at least 1 person or answers one question.

    In 2011 there were no masses detected on the liver via CT scan (monitoring HepC) .
    In 2016 there was a 4.2cm mass. In regards to how fast or slow this thing grows- the 5 year span is our only point of reference. *MRIs 6 weeks apart showed new appearance of mets to bones and skull*

    June 3- Overall not feeling well- pain in abdomen. CT Scan to rule out appendicitis
    **Mass on Liver Found – Suspected Hepatocellular Carcinoma – MRI To confirm
    June 7 – MRI Confirmed Mass – results “atypical for HCC”- overall inconclusive
    June 23- 2nd MRI of Abdomen, Bones and Chest CT
    ***MRI favors ICC ***MRI of Bones and CT scan – clear
    July 18 Liver transplant evaluation- Interdisciplinary team says inoperable – biopsy needed
    Aug 1- Biopsy (Confirmed Intrahepatic Cholangiocarcinoma)
    Aug 3– PET Scan (Shows Mets to thoracic spine lesion (1.5×1.3cm) and skull base (1.5cmx1cm)
    Aug 10– MRI of Skull, Spine and Brain
    *MRI confirmed T9, (new) T6 and the space between T9/T10 and right side of skull base.
    Brain and cervical spine no METS. Liver transplant evaluation – denied
    Aug18– Radiation Consult – forgoing radiation on her spine and skull as they are not presenting pain or any issues /symptoms or effecting her spinal cord, etc.
    Aug31-Chemo with GEMOX every other Wednesday for 4 treatments. Then we will reassess.
    Oct 10th- CT Scan to check progress – LFTs are high.
    Scan Results: Stable Disease. No change in initial measurements of mass. No new growths.!!
    Oct 12- 4th treatment – Mom is really feeling the effects of the chemo and missing being able to do things…any thing.
    Her liver mass and spots on bones dont really present any “symptoms” – she is suffering the chemo. She is doing soul searching on whether or not to continue with chemo or enjoy her days.

    Nov 23- Mom’s last treatment was 10.12.16. Since then she has steadily improved with overall energy and ability to enjoy life. She still gets tired but the farther away we get from her last treatment the better. Onc said up to 2 months post chemo to see a full rebound to be back where she was before chemo. We will see ONC every 4 weeks for a check in. Until her health deteriorates we will just be monitored. Her blood work looks GREAT! All within normal limits AND her HEP C is still undetectable.

    Jan 30, 2017- Mom had a great December. However she has been practically bedridden since New Year with headache. CT on Jan 8th – ER Trip due to headache for 10 days, showed sinusitis and lytic changes to the foramen magnum where her bone mets is. Today we see ONC to go over the MRI from 1/26 to get a better idea what is going on. She is in bad shape. Will update after our appt.

    #92707
    middlesister1
    Moderator

    Meg,

    This disease can be overwhelming to the patient and those caregivers/loved ones who face it with them. I hope you get the news that transplant is an option for your Mom.

    Let us know how you make out,
    Catherine

    #92703
    marions
    Moderator

    Meg….fantastic on the much awaited phone call. It so often seems as if everything is moving at a snail’s pace therewith increasing our anxiety. As the only child of a single parent, you have much on your shoulders, dear Meg. Like you, I believe that children hold magical powers in helping us through rough times.
    Please know that this board is designed for each and everyone, no matter where in the world. Each and every story is unique- no matter what it entails – ultimately though we are equal partners touched by this cancer.
    Hugs,
    Marion

    #92706

    Thank you! I also saw another of your posts recommending a downloadable ebook. I have submitted that request to get a copy.
    Thank you for the link. I will get that going. Something for my brain to focus on tonight.

    Actually FINALLY!!!..about 5 minutes ago- after a week and 2 days I got a call back and am scheduling the transplant evaluation and surgeon appointment!

    I know I am not alone. Ive read so many stories on this site. Some encouraging and some painfully heartbreaking. I know Im not alone and find comfort in that at least.
    Shes my only parent. Im her only child. Luckily my 3 kids keep her smiling.

    I thrive with having as much information as I can so I was beyond blessed to find this site.
    I dont know what I posted for other than a place to put my thoughts, for now, as I dont have anything to offer.

    Thank you for reading and replying.

    -Meg

    #92705
    marions
    Moderator

    Meg….please know that everyone feels the way you do, having to accept the diagnosis of a rare cancer, the process of education, fear, disappointment and the the turmoil it causes in our lives, all is overwhelming. Take little steps, one day at a time, and eventually all will come together for you.

    The American Society of Oncology (ASCO) provides a good overview of questions to ask the oncologist.
    Take a look: http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

    Most of all though, I am hoping for others to chime in and help you navigate the rough waters.

    Stay strong
    Hugs,
    Marion

    #92704

    I also have no idea what tomorrow holds, meeting with an oncologist- other than it was a requirement and he will be on her case review committee.

    Ive met with GIs and OBs and Cardiologists and reviewed labs and results and reports- medical meetings and discussions are nothing new to me.
    This is my first ever appointment with an oncologist and I feel 100% unprepared.
    For my OCD this is reeking absolute havoc. As her advocate I cannot get lost, but I am.

    #12606

    Hey all!
    Im here on my mom’s behalf.

    She was presenting abdominal pain and overall malaise with off/on fever for 1 week. 5/31

    6/6/16. CT to check for appendicitis showed 3.5cm mass on right posterior lobe- suspected HCC- esophogial varices present. Enlarged spleen.
    6/10/16. MRI was done, inconclusive- sent to liver specialist in Houston. Scheduled another MRI/CT
    6/17/16- We had a wonderful vacation
    6/23 MRI#2 showed a 4.2×3.1cm mass with capsular retraction and the basic radiology characteristics for cholangiocarcinoma. (They were comparing it to the initial diagnosis of hepatocellular carcinoma) ICC favored. Slightly enlarged spleen. No visible spread to bones or other organs at this time.

    So, we must have a liver transplant eval, see an oncologist, a surgeon and have her entire case reviewed by the committee to decide treatment.

    I have read through this board and am happy (and very sad) to have a place to “exist”.
    Oncologist appointment tomorrow 7/13 . Endoscopy next week.
    Waiting to schedule appt for evaluation for transplant and see the surgeon.
    Moving at a snail’s pace it seems like. So many unknowns, so many questions.

    Ive heard conflicting things about surgery on cirrhotic livers or people with HepC- They didnt even want to biopsy it and I know surgery is favored as treatments go.
    My head is spinning when I actually stop and think about it. And we are still in the very beginning of it all. She is currently treating her Hep C with Harvoni with minimal side effects, so that is a good thing.

    Im just aching for a plan of action. Its been over a month since the word “cancer” entered our lives and we are weeks away from any definitive progress. I go to bed and wake up with a giant “What’s Next?!” above my head everyday.

    -Thanks for your time,
    Heavy- Hearted Meg

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