Discussion Board Forums Introductions! New from Canada

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  • #15183
    marions
    Moderator

    Nancy….I believe that all patients need to have in place the next step of action. No matter whether the current treatment is showing efficacy, it’s best to make contact with the next round of specialists. One must be prepared that current regimen may not work or will quit working. Gem/Cis is not curative.
    Good luck and please keep us informed. We care and we are in this together.

    Hugs,
    Marion

    #15182
    nancyd
    Participant

    Thank you everyone for the replies. I will keep trying to find out more about cc and options for treatment and I now have a few more terms/docs. on my list to investigate. She had her scan so we will see if there has been a reduction and go from there. I am hoping if she can get molecular testing, it will show that another drug may work better for her specific tumor. I am feeling like it’s good that nothing has increased in size, maybe this scan will show a decrease, fingers crossed. This group is a Godsend for people, it’s a very positive informative site, thanks to all.

    #15186

    Hi! I am sorry about your friend.
    You’ve had great responses thus far.
    My mother is also inoperable with mets to spine and skull and a suspicious spot on lung.
    Her main tumor is 4.5-3.5cm at the top of her right posterior lobe. No duct interference so the detection was stumbled upon vs symptoms presented.

    She has been doing GemOx. Her CA19 was never high- it was never a factor. Her liver panel was high during the LONG process of diagnosis due to HepC. It became all normal during treatment and then remission for the HepC.
    Now doing chemo her LFT numbers are high and rising- which Ive read is common. CA19 is no longer a factor since her diagnosis.

    We went for a radiation consult but we decided not to bother with the treatments as she is not having pain from the small tumors on the spine and skull. Radiation can always be done in conjunction with or between chemo should they grow in size or number and cause pain. Otherwise systemic chemo is the only defense.

    Mom is not a candidate for any surgery or transplant due to 1. cirrhosis 2. mets to other areas.
    Chemo is her only option. We have a scan on Monday to check her progress.

    #15184
    tiah
    Member

    Hi Nancy,

    I’m so sorry to hear about your friends diagnosis. You have asked some great questions and it’s quite amazing that you have done so much research for her. As Marion mentioned, CA 19-9 tumour marker is very commonly used, however some people have very low levels and therefore it may be unuseful. In my mothers case (she is the one with CC), she has always had levels below 20 regardless of her condition.

    As your friends cancer has spread the chemotherapy is still going to be your best option for the current time but the SIRT Y-90 spheres could be an option. Unfortunately, it is not easy to come by doctors who perform it or have access to it, and doctors are very unlikely to perform it unless they are familiar with it, so therefore getting a referral to a doctor who does it would be ideal. SIRT is often used in other kinds of cancer (eg. bowel) where there is liver metastasis. My mother was fortunate to have SIRT and has had some positive results, however she is still unable to receive a resection and as a result is still considered incurable. As you are in Canada I’m not sure of the costs associated with SIRT as it may not be covered through the public health care (it isn’t in Australia) however we were fortunate to access it through a trial.

    As for the metastasis, the only treatment is really chemotherapy with radiation an option if there is severe pain. Pain management can include a variety of other options including Dexamethasone (oral tablets) and also Denosumab infusions. (At least these are options in Australia, I would assume Canada too)
    Best wishes, Tiah.

    #15185
    marions
    Moderator

    Nancy…welcome to our message board. Most of all feel helpless when this cancer strikes, you are taking on a big role and for that I admire you.

    Hopefully our fantastic Canadian friends will chime in on some of your questions. In the meantime though I will try my best to help you out.

    As far as I know, Canadian patients can request a referral to another center or physician. It has to be done by the treating physician.

    Being that you are in Ottawa and fairly close to Princess Margaret Cancer Center, Toronto, I would request a referral to Dr. Jennifer Knox:
    http://www.uhn.ca/PrincessMargaret/PatientsFamilies/Clinics_Tests/Gastrointestinal/Pages/team.aspx

    This is a video of Dr. Knox discussing kidney cancer:
    https://www.youtube.com/watch?v=ZRoXXlyPf7M

    The CA 19-9 tumor marker (generally) is used to support all other findings for diagnosis, but most often they markers are measured at onset of chemotherapy and the upward and downward trend is taken in account throughout treatment. Please know that some people don’t carry a particular antigen and thereby eliminating the usefulness of the CA 19-9 markers. Perhaps this is the case with your dear best friend? There are some oncologists, who simply don’t use this test, not sure why it is so.

    From what I have learned, bone metastases may not be treated until pain occurs. However; if indeed your friend’s physician can get a referral to Princess Margaret perhaps he can include Dr. Lawson, a radiation oncologist:
    http://www.radonc.utoronto.ca/content/laura-dawson

    Education is one of the best defenses against any disease. We are here to help you understand; simply ask away. Additionally, you may want to peruse our home page by using this link:
    http://cholangiocarcinoma.org/newly-dx/

    I will stop here and await the response of others, but please stay with us. We care and we
    are in this together.

    Hugs
    Marion

    #354
    nancyd
    Participant

    I am writing as a friend of someone diagnosed with Inoperable “advanced” Intrahepatic CC. I have spent countless hours pouring over these posts trying to find any information that may help her through this journey. I have many questions but find it hard to navigate this as a Canadian. Here we have a board who makes decisions and we go along with what is suggested. She just finished her first series of Gem/Cis (5 month of chemo) and seemed to tolerate it quite well. Her tumours did not decrease in size but they also did not increase either (a good sign I think). Her one tumor is about 11 cm with other smaller ones in her other lobe. Her blood work is good but when I went through her records and there is no Ca 9 19 level? Would this not be a level that should be measured. Also no molecular testing, can she ask for this or do you have to do that on your own? I also read about the Y 90, it seems quite successful yet the radiologist did not seem keen, saying it was not to be used at that point?? She also has mets to her hip and back but the radiologist told her there is no need to treat them unless she is in pain. Does this seem reasonable?
    I fell like there is so little knowledge about CC that I need to advocate on her behave but am unsure of what is reasonable to ask for. I know that second opinion is important but with the board this is not an option here. Is it reasonable to ask that her case be assessed by a different hospital? Can her results be sent to a US hospital that specializes in this cancer?
    She is my very best friend and I feel rather helpless so I took on the role of advising her via this site. Any insight anyone can give me, especially someone dealing with this in Canada would be appreciated. Thank you to everyone for posting, this site has become my obsession, it is filled with loving, encouraging people, who are willing to share their stories to benefit others.

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