New member, new diagnosis, new to all of this.

Discussion Board Forums Introductions! New member, new diagnosis, new to all of this.

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    Thanks so much for your very helpful responses to my questions of yesterday evening – As I indicated in my prior posts, I knew nothing about cancer until being diagnosed in September and will undoubtedly be seeking lots of help from this very knowledgeable community in the future –
    I have one other process question – I (along with my daughter) have now outlined my history on the Introductions Board – Neither of us knew anything about cancer before my diagnosis in September and we’re now in the process of trying to educate ourselves with the wonderful assistance of those participating on these boards which means we’ll be asking lots of questions in the future – Should we put future posts on the Introductions Board or should we now move to the Discussion Board?
    Again, thanks so much for your kind responses and for allowing us to participate in your cancer community –
    Regards, Don


    Don and Kerry, welcome to the best little family no one wants to be a part of. We found this a few weeks after my husband’s diagnosis and subsequent surgery. I really wish I had found it sooner but they have been the best support through all of it.
    Ask away all questions. Most of us have been there done that at some point and if one of us hasn’t some else has.
    Great place to find a lot of resources.

    Keep us posted on progress.



    If you are sure you only have “intrahepatic cholangiocarcinoma (ICC)”; and I f I understand correctly you have the tumors in the size of mm rather than cm; and depending on how large the lymph nodes you have.
    In my opinion, you should consult an interventional radiologist to see whether chemoembolization and RFA or microwave ablation may be of benefit to BURN off the tumors in the liver and IRE or cryoablation may be used to eliminate the lymph nodes met if not contraindicated ,then after the ablations,use the current chemotherapy as adjuvant therapy to prevent recurrence.
    Another suggestion is to consult a radiation oncologist to see whether IMRT,SBRT is of benefit to you.
    your situation in a way is similar to mine ; and please remember, I am only a patient and not a doctor.

    God bless.


    Hello Don and Kerry..welcome to our special group of people focused on this disease. Please know that we do not censor this site nor do we have any expectations as to how you should talk, what you would care to discuss, or whichever subject you would like to address. There are no rules to follow; we simply are here for each other. It is heartwarming to see your postings come about within a few minutes, independent of each other.
    Tumor markers, the majority are proteins, are substances that are produced by cancer or by other cells of the body. Tumor markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions.
    In order to assess whether treatment is working, physicians track the rise or fall of these markers. Tumor markers fluctuate hence, they physician focuses on the overall up or down trend of these markers and then compare to scan results and the overall well-being of the patient.
    Response criteria for radiation results are the following:
    •CR (complete response) = disappearance of all target lesions
    •PR (partial response) = 30% decrease in the sum of the longest diameter of target lesions
    •PD (progressive disease) = 20% increase in the sum of the longest diameter of target lesions
    •SD (stable disease) = small changes that do not meet above criteria

    As the slight changes in your readings do not reflect complete response, partial response, or progressive disease, it then reflects perfectly the physicians evaluation. Congratulations. I wish for continued good news coming your way.


    I’m newly diagnosed and my daughter and I posted some information on your “Introductions” board today – I’m writing thi post to provide some additional information to ask a couple of questions – I’m not quite sure whether this should be posted on your “Introductions” board or on some other board so I’d appreciate it if someone could advise me as to where future messages should be located –
    My original Tumor Marker 19-9 showed a 357 count – The second Tumor Marker which was done after two Chemotherapy cycles (one a week for two weeks and then skip a week to complete a cycle) showed a 333 count –
    The CT scan (done November 4,2013) also done after two Chemotherapy cycles read, in part, as follows:
    Subpleural nodule located posteriorly within the left lower lobe is 8 x 14 mm, previously {on first CT scan done August 30 2013) approximately 6 x 10 mm – Nodule located posteriorly in the right base is 4 x 10 mm, previously 6 mm –

    Confluent hypoattenuating nodules or masses are demonstrated within the liver. This is most prominent throughout the left lobe and within the anterior right lobe as evident previously – 12 mL low attenuation lesion within the posterior right lobe is new – Enlarged gastrohepatic nodes are present – 13 x 14 mm node as previously approxinmately 9 x 12 mm – Mildly enlarged periportal nodes are present – 12 mL low-attenuation lesion within the posterior right lobe is new –

    Spleen, adnenal glands pancreas are stable in appearance . No hydrohephrosis is present – Low-attenuation left renal lesion laterally is 14 x 21 mm, unchanged –

    Extensive confluent low-attenuation masses throughout the liver most prominent anteriorly, overall slightly increased from prior study –
    Gastrohepatic and periportal mild adenopathy, slightly increased –
    Small lower lobe pulmonary nodules, slightly increased –

    I obviously don’t understand this report and I hope I’m not violating any rules by posing this information on the board – If so, please tell me and I promise not to do this again –
    I’d appreciate it if someone would be kind enough to answer a couple of questions for me – First, what do the Tumor Marker numbers mean? What is being counted?
    Secondly, although the report seems to me to indicate the nodules have grown, my Oncologist indicated the nodules were stable and he was not concerned about the minimal growth indicated on the report –

    As I mentioned in my earlier Introduction post today I am totally new and know nothing except what my daughter has dug up on the internet so if anyone could provide me with some clarification I would be most grateful –
    Regards to all, Don


    Don and Kerry, welcome to our family but wish you did not have to find us. You are an amazing family and your attitudes sure give a lot of hope to all. Kerry, you have dotted all your I’s and crossed all your T’s. My Teddy always used to say, the only thing I want is for no one to cry in front of me. So I totally understand that one. To us the best word there is beside ‘cured’ is STABLE. This is good so hang on to that. I am from your neighborhood, Milwaukee, but I do forgive the Bears defeat over the Pack last week! Just keep your wonderful attitudes going up, be sure to use us anyway you need to and please keep us in the loop on your success!


    Welcome Kerry and Don, to our little family. I’m sorry you both had to find us, but so happy you have, as the support you will find here is amazing.
    I think it’s wonderful that family members are both posting to here.
    Don, keep up your positive attitude. And please use this site for information and support. And remember to post all of your good news in our good news section.


    Just checked my email and discovered you folks have been kind enough to allow me to post on your excellent site for which I thank you –
    I had intended to introduce myself and briefly go through developments in my case – However, when I logged on I discovered someone had already put the first introduction of the day on this site – I began to read that post and read through two paragraphs before I finally realized the post was about me and had been put up by my youngest daughter!!! She explained my condition and the family’s reactions very well so I see no need for any further explanation right now –
    She is the one who found your site last week – Needless to say, we’ve both found those posting on your site to be informative, knowledgeable, helpful, sensitive and just plain wonderful –
    We know nothing about cancer but have already learned a lot since locating your site – We look forward to learning from, and participating in, your online community – Thanks again for allowing us entry!!!


    Hi Kerry,

    Welcome to the site and thank you for sharing your experience with us. This site is incredible and there is always some one who can answer a query or offer support. I always think the support ‘buck’ stops somewhere and for you, I imagine your mum supports your Dad, you support your mum and you stay ‘strong’ for everyone above you. I couldn’t have got through the last year without this site taking some of the burden off me and listening when I didn’t know where else to turn for advice.


    Welcome Kerry to the site no on wants to have to a member of, but where you will (and sounds like you already have) fine many caring and informative people.

    Your Dad sounds amazing! What a great attitude and outlook on life.

    Sounds like his treatment is all laid out for him and he is in fight mode. And you sound like a wonderful daughter.

    Feel free to ask any questions and someone will come along with answers or at the very least describe their own experiences.

    On this site, we recognize that the caretakers and loved ones of the patient have an even more emotional journey.

    Take care,


    Just wanted to post a note to let everyone know how great this site has been for me, and for my dad (the patient). He was diagnosed with Stage IV inoperable intrahepatic cholangiocarcinoma right around Labor Day of this year. He is 80 years young, and up to now has had very little in the way of health problems for the majority of his life. I am the youngest of the five siblings in our family, and as his 32 year old daughter, this has been something that I am still struggling to wrap my head around. To read posts and responses from spouses, kids, grandkids, doctors, caregivers and anyone else I missed, has helped immensely.

    He had a port put in and began treatment at the end of September. He is now going into the second treatment of his third round of chemo. The oncologist is referring to it as palliative, since the largest tumor is on his liver and at this point, remains inoperable. He has two small nodules on his lungs that the doctor thinks are of little concern at this point. He also has an enlarged lymph node nearby. He is on the Gem/Cis regimen going once a week, with every third week off. So far he has been tolerating the chemo extremely well. His appetite for the most part remains intact, and fatigue seems to be his worst side effect, usually occurring a few days post treatment, and lasting for a day or two at most. He got the results back from his first CT scan since beginning treatment, and the largest tumor on his liver as well as the two small nodules did not grow, but they did not shrink either. His tumor marker went down a bit, so the doctor and my dad both view this news as positive. The cancer is stable, which I know is better than nothing, but I’m not sure what to think.

    His mental state, is awe inspiring. He views this diagnosis not as a curse but has repeatedly called it a blessing. He said that so many people just drop dead unexpectedly and are not given any sort of warning, so for that, he is grateful. He also said that he feels blessed that he hasn’t felt any pain at all throughout this entire experience, and continues to feel that way even now. He wants nothing to do with timelines, predictions and the like, which I think is exactly how it should be. The only time he gets upset, is when he sees us upset. He keeps saying that he has the easy part at this point, and the burden to bear is and will continue to be on us. His biggest concern is all of us kids, and especially my mom. She is sixteen years younger than him and up to now has been a very strong, stoic, and direct woman. To see her try to grapple with this has been crushing. She is doing the best she knows how, and I try to get her to talk to me when she falls apart, which I think is helping a little. We are all trying to deal with this in our own ways as best we can, and I am so grateful that my dad has been and continues to be so open with all of us as to how he feels about everything. The good news, is that I don’t feel that I have to make up for any lost time, so there is no anxiety on my part regarding mending fences, etc. At this point any time I get to spend with him is in my mind, a bonus.

    The oncologist he sees in Cincinnati, OH is a part of the University of Cincinnati. His name is Dr. Crane. Both parents like him, and he is very big about maintaining quality of life, which everyone appreciates. I live five hours away in Chicago and have sent his scans and info to a friend who is married to a doctor who works at the University of Chicago, just to get a second opinion. I’m not sure what, if anything can be done to change the facts at this point, but I figure it can’t hurt.

    My apologies for the long winded email, just wanted to get the initial post out of the way with all of the facts. Thanks to everyone who contributes to this forum, I cannot tell you all how helpful this site has been. I’m new to all of this, but am learning tons of new information, every day. Please feel free to comment one way or another regarding anything I’ve just written!

Viewing 11 posts - 16 through 26 (of 26 total)
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