Discussion Board Forums Introductions! Hi everyone, recently diagnosed with CC

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  • #100798
    bglass
    Moderator

    Hi Hesw,

    Welcome to our discussion board.  I am sorry about your diagnosis but it is very good news you are feeling well and staying positive.  We have heard from other patients writing from Spain about the confidence they have in the local medical services, and I have seen medical professionals from Spain listed as speakers at international medical conferences, who have expertise with our rare cancer.

    Treating our cancer is a challenge because treatments can lose effectiveness over time.  So patients may move from one treatment to the next.  Have your doctors discussed alternatives to gem-cis?  Were you able to have genomic profiling to see if your cancer has any mutations that could qualify you for a clinical trial?  I was looking at the clinicaltrials.gov website and some of the same trials we see discussed on this board have research sites in Spain.  This might be something to ask your doctors about if you are exploring options.

    I hope you have had the chance to look at the Cholangiocarcinoma Foundation website — it has a lot of good information for patients.

    Please stay in touch, and send us any questions you have.

    Take care, regards, Mary

    #100795
    Hesw
    Participant

    Hello

    I just love this site. So helpful!

    I am 60. I was diagnosed with intrahepatic cancer stage 4 beginning October and have just had chemo with cisplatin and Gem…..It didn’t work The tumours got bigger :I live in Spain which has a good public healthcare system . But I m a bit scared. I tried RSO oil for 4 months and I am now stopping because I m not sure if there is alcohol residue in it ,  and trying antidepressants as I  been told that tumours grow if you don’t maintain some sort of emotional stability all the time. I have always been a nervous person.  However I feel quite well physically . I ve survived 5 months so far with chemo So I am trying to hold on to that as a positive . I ve now chosen a good support network of friends , no negativity and hope to defy the odds.

    Please comment

    #100677
    Richardw
    Participant

    Congratulations on getting into the program, I’m sure you were stressed

     

    oh boy… Biliary drains.  I had mine in for 3 months and they never worked until I got to Mayo put their stents in.  They do a great job with Stents mine lasted for over a month and a half.

    My radiation and chemo wasn’t too bad, they do their best to make sure you are as comfortable as possible with meds for Nausea.  I just started to loose my appetite after the 2nd week or so.  Eat when you can which is tough because you can’t eat before radiation which means you have a window after you get back from your morning treatment to until you go back for your afternoon treatment.  After the third week you are just tired of the Chemo Bag and Radiation and office visits.    Just hang in there and know you are on the right path.

    I got done my radiation and Chemo on May 8th.  I got the call to relocate to Rochester on August 18th.  Liver Staging was on August 30.  Got a call that my liver was ready on October 11.  It went quickly make sure you get any dental done as well as the vaccinations as soon as you get back home.    The whole thing was a 10 month journey it seemed like forever when you are going through it, after it is all done you forget all the bad and are happy to know you have a new lease on life.

    I know how hard it was going through and not knowing what was around the corner please reach out if you have any questions.

    by the way you may want to buy a plastic sleeve that goes over your arm to cover your arm pic line in the shower it makes it easier to take a shower.

     

    #100670
    Swadmin
    Participant

    I start the radiation/chemo treatment next week for 4 weeks and then on the waiting list for transplant. How long was your wait for transplant? How are you doing overall?

    I had another ERCP a month ago and they were able to put stents in successfully so thankfully I don’t have the biliary drain anymore. The stents are working great, my bilirubin is down to 1.7 and jaundice is gone.

    So far my experience at Mayo has been great, the doctors are very open and explain everything really well. I had my radiation simulation yesterday in preparation for treatment on Monday.

    #100665
    Richardw
    Participant

    Hello,

    Just wanted to know how it was going?  I went through the process at Mayo as well.

    #100525
    bglass
    Moderator

    Hi Swadmin,

    Welcome to our community.  This diagnosis is definitely not good news to receive, I agree.  I found the time between diagnosis and having a treatment plan the hardest, in terms of feeling fearful.  Once I started treatment, the fear subsided somewhat because the treatment felt purposeful, I had a lot of contact with medical providers who were reassuring, and life settled down.  And over time, I got more used to the idea that I had this cancer.

    It also helped learning more about the cancer and its treatments.  There is a lot of helpful material on the Cholangiocarcinoma Foundation website for patients that you can consult if you wish to dig in.

    I saw your questions about your biliary catheter.  If you search “biliary catheter” on the internet,  you can find patient info sheets on the websites of some of the major cancer hospitals.  However, if something seems uncertain or wrong, it would be better to contact your medical provider rather than relying on the internet.  The doctors we see for this type of illness can seem unapproachable or too busy, but I came to realize that I could get quick attention if I had a problem.  If you call the oncology department where you have been treated, there should be either nurses on call or some other way to ask a question and get a quick response.  I also found with my doctors, the hospital website allowed emails, and usually my questions were answered within a day or two.  It is important to speak up if you have a concern.

    Best wishes as you pursue the transplant protocol.  Please stay in touch and let us know how you are doing.

    Regards, Mary

     

     

    #100523
    Swadmin
    Participant

    Hi everyone, its been about 3 months since I started on this path. Had itchiness and jaundice and CT scan found a mass in bile ducts. I have had 3 “brushings”, 1 via ERCP and twice when placing my biliary catheter but so far not enough for a good biopsy. My doctor still has started me on the liver transplant program through Mayo Clinic and am currently going through that workup. I’m pretty scared overall and not really sure what to expect.

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