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Thread: Hi Everyone

  1. #1
    Newbie New User
    Join Date
    Jun 2018
    Posts
    2

    Hi Everyone

    I'm Mickey,
    I've had several relatives with cancer, some still with us, some not. My own cancer is not a surprise. Not sure if I profiled my history correctly, so here goes. Likely a familiar story to some of you:

    56 y.o. Married white male. Dx with HCV in 2000. Clean and sober since 1985. Normal blood work including liver panels until 2000. Genotype 3b. Generally an easier one to cure, back then....Pegylated Interferon plus ribavirin for 24 weeks. At the time, combo therapy had not yet been FDA approved, so I was able to have my own ribavirin compounded. Undetectable at 12 weeks, and at 24. Relapsed. Fibrosis score via punch biopsy at that time, 3/4.

    Tried it again, 2004 or 5, didn't achieve viral load reduction in 3 weeks necessary to continue. Cirrhotic now, with varices developing, but still well compensated. Asymptomatic, except for a little pruritis (itching)

    Can't recall the name of the first gen antiviral I tried, but it worked too, but relapsed.

    2013, had an undramatic variceal bleed with melena and had a TIPS placed.

    October 2016, started Epclusa plus Riba. Oddly, had another small bleed, and had a TIPS adjustment (had moved from CT to MA, now at different hospital) Epclusa was discontinued while in the hospital for the TIPS adjustment.Doctors at that center wanted me to re-start at once.

    Still feel pretty much fine. Met with major transplant center (different hospital)hepatologist and was advised about poorly documented cases of HCC occurring in antiviral treatment of cirrhotic patients, and decided NOT to continue Epclusa. I was cirrhotic already, and would need a transplant at some point anyway.

    MRI of liver had been performed every 6 to 9 months, and no lesions grew or appeared malignant, until summer 2017. 1.8cm lesion met MILAN criteria, but wasn't clearly HCC. Acsepted as transplant patient. Went through orientation and full battery of tests.3 month MRI and chief radiologist sees the lesion as cholangiocarcinoma, which bars me from transplant listing. Biopsy proves otherwise. HCC as originally read.

    Two rounds of TACE or performed, and another lesion adjacent to the original one is embolized successfullyl

    Last week scans were performed. Hepatologist stated I would go active on transplant list June 15. This was Monday. Tumor board meets following day Same chief radiologist sees two lesions in opposite lobe, only one of which meets MILAN criteria. I receive a call, telling me I'm going inactive. Ninety day re-scan.My primary doctor doesn't say so, but I can tell she disagrees with this assessment. She tells me I should seek additional opinions from other centers.

    I am lucky to have family in Southern California, and Texas, and am now trying to get assessed by doctors at best centers in those regions, but will really move anywhere I need to move to get a transplant, BEFORE this cancer is untreatable by transplant.

    My small rant: I've done EVERY single thing the best doctors I could find asked since 2000. This cancer could not possibly have been detected any earlier, by any means.It was barely cancer when they detected it. If the radiologist hadn't erred and been confident it was cholangiocarcinoma, I would have a transplant already, based on MELD score exception for HCC. I would reached a MELD score of 34 in March, if my calculations are correct. Rant complete. Wish I didn't need to be here, but glad there is a group here that knows how all this feels. I hope I can help anyone while I'm here and will check in regularly. Fell free to email me via profile if you like.

    Thanks All
    Mickey

  2. #2
    Newbie Regular User
    Join Date
    Jun 2017
    Posts
    10
    Hi Mickey. Sorry you find yourself here despite your best efforts. My dad just turned 61 and was diagnosed with HCC with Mets to bones 1 year ago(now lungs and lymph nodes as of scan yesterday). I hope you have support and an amazing attitude and outlook...it has brought my dad so far and given him and all of us so much comfort. Sending lots of light and positivity your way.

    When will you hear more on any upcoming appointments?

    Jen

 

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