Intrahepatic CC stage lV newly diagnosed what do I do next?

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  • #59431
    fireeeyore
    Member

    Shlamoney,

    My MIL has a 10 cm tumor and did gem/cis – the cis made her very sick. She was weak, vomiting, unable to eat more than a few bites at a time. They changed to gem/ox and she has tolerated that a little better.

    We investigated radiational seed implanatation – SIRspheres. I recommend at least seeing if you are a candidate for that. My MIL sadly was not.

    I wish you and your family the best of luck on this journey. You have a large support system, use them, and steer them to this discussion board. We are a very small family and found wonderful solace here.

    HUGS,

    Jen

    #59430
    ronidinkes
    Member

    Dear Shlamoney,

    Chemotherapy, radiation, and other treatments are a very individual decision.

    My mother had the Whipple 8/2010. She was not interested in Chemotherapy. She has 6 weeks of radiation in 2/2011 and that was it. She survived 19.5 months and recently passed March 17, 2012.

    You have to follow your gut, and whatever your heart tell you. My mother was very brave and stuck to her decisions. Not an easy thing in this day and age of medicine and options.

    If you ever need to talk I am here. Trust yourself, enjoy the sunshine. Sending many hugs your way.

    Love,
    Roni Dinkes
    ronidinkes@yahoo.com

    #59429
    mlepp0416
    Participant

    shlamoney:

    I think that the loss of appetite goes along with the chemo. My husband Tom had the same issue. He did drink lots and lots of Boost, 1 bottle of Boost has as much calories as a full meal. He did use the Boost Plus as it has even extra calories. This will help you maintain your weight.

    Little meals or snacks (High Calories) is a good thing. The more calories you take in the better it will be. Tom, for a long time, could not stomach the taste or smell of eggs…but that eventually went away. He did suffer from chemo brain and called ‘Boost’ Bounce! Everytime he asked for a Bounce I had to think about what he was talking about! Drink whole milk (for the calories) and basically anything with high protein and high calories!

    You need to rest as much as possible, but also get up and move. With Spring just around the corner, hopefully you can get outside.

    Love and Hugs!
    Margaret

    #59428
    shlamoney
    Member

    I started on Gem/oxa last week and now I am always dead tired with very little digestion happening. I can eat tiny meals but I have little appetite. Is it the chemo or is it the 5cm liver tumor? I have no nausea but I just can’t eat much. I feel like the chemo is eating for me. I always have a stomach ache. before chemo I was feeling normal with no ache. now I am always aching. CHEMO?

    WHatever I eat, it tastes terrible. Not complaining its just a fact. My taste buds are gone I think. Im on a biweekly treatment with 5 days until my next one. I need to get some energy somehow somewhere before my next treatment starts.

    #59427
    pcl1029
    Member

    Hi,
    Thanks for your info.
    did you consult an interventional radiologiost for the possibility of other treatment that radiology can offer before the chemotherapy start? It will not hurt to ask especially Standard University is famous for their research in the radiology oncology.
    I am no doctor,but it seems to me the advancement on radiation oncology is faster and produce relatively less side effects and better quality of life if you qualified.
    If I were you, I will get a 2nd consult on radiation oncology as soon as possible unless you had done so.
    Please eat well starting now, no meat chicken is ok ,a lot of protein like nuts and beans, lots of green vegetable and fruits.drink AT LEAST 6-8 glasses of fluids/day and exercise 15 min.(eg. walking is the best) a day but not too munch .
    Please tell me the regimen or the name of the chemotherapy if you know?
    Cholangiocarcinoma is a long and winging road to travel,so to prepare and look forward is the key to survival.
    God bless.

    #59426
    lainy
    Participant

    Hi, shlamoney, WOW you have 8 children, if that never got you I am sure CC will run the opposite way once you start treatments. LOL (sorry couldn’t help it). You are still ‘younger’, evidently in great shape and you have a positive attitude…all a winning combination. Onc’s may give us a hint of what’s around the corner but we have learned not to listen to that. We were not born with expiration dates on our feet and always try to stay realistically optimistic. If you look on the Home page under the heading “Good News” you will find many success stories. I just want to wish you the best of luck on starting chemo this week.

    #59425
    peggyp
    Member

    Dear Shlamoney,

    My husband was diagnosed with Stage IV ICC in August ’08. He had a resection but two spots showed up on the part of the liver that was not removed in Dec. ’08. Not knowing what they were, the doctors decided to wait until his next scans. In March ’09 he presented with multiple tumors.
    We were told that chemo and radiation were not options so he did not have any after surgery. We both wish he had. Chemo was started in April ’09 and he has been on three different chemo cocktails. We had good results with Folfox but had to discontinue that after 18 cycles due to an adverse reaction to the oxaliplatin. Then on to Gem/Cis until that affected his remaining kidney function. Last chemo was Xeloda. He had a chemoembolization four weeks ago and is scheduled for another one on April 17. My opinion is to try whatever is available to you. My husband is still able to enjoy life; he tires easily but knows his limits. We are raising a 14-yr. old girl and 9-yr. old boy who are very active in sports. My husband tries to make all of their games but sometimes isn’t feeling up to it. I believe the kids are what keeps him going because he enjoys seeing how they change from year to year and what all they accomplish. My husband was in good health prior to CC so I guess it would depend on your health, age, outlook, etc. as to which choice you make. By the way, welcome to our family, PeggyP

    #59424
    shlamoney
    Member

    Thank you for your responses already, My wife and I are totally amazed at how quickly so many have replied. WOW!

    To answer a question or two from above:

    I am 54 years old, 185 lbs, 6’1″ tall and can walk at least 6 miles a day. I guess that means I am in fairly good shape. I have never drank, smoked or done drugs.
    My only symptoms so far are a dull ache in the upper right abdomen and I can’t eat much at one meal. So I get to eat 6 small meals a day :)

    My ONC says I have 18-20 months if I do Chemo.

    I have a lot to live for. I have eight children, six married and soon to have 8 grandchildren, so I am motivated to fight this CC dragon.
    I am new to this site so any referencing to specific topics on this discussion board you could give me to stay positive would be helpful.

    Again thanks a million for your responses…..

    #59423
    gavin
    Moderator

    Hi Shlamoney,

    Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I’m glad that you’ve joined in with us all here as you will get a ton of support and help from all of us here.

    Sorry that I can’t help you with any personal experiences of chemo as my dad never had that, but I know that you will get a load of help from the members here. My dad had the option of chemo but he wanted to go with what he felt would give him the best quality of life fro the time that he had left after he had his diagnosis. His CC wes deemed inoperable from diagnosis and he chose to have PDT as his treatment instead of the chemo.

    I know that this is a tough call for you to make and I wish you every success with what you choose to do. There is a ton of info posted here on the site about all types of chemo etc by the members and I am sure that reading many of the posts will help you here. And please know that we are all here for you as well and stay in touch with us please. We care.

    Best wishes,

    Gavin

    #59422
    pamela
    Participant

    Hi Shlamoney,

    Welcome to our family. I do think chemo works. My daughter, Lauren is 26 and has CC. She has a large tumor in her right side and several small tumors in the left. Her large tumor has shrunk 4 cm. since Sept. and she feels way better. Her small tumors have also shrunk. Her last MRI showed that her tumors are now more stable than drastic shrinking like before. The doctors are now planning for radioembolization with Y90. Her surgeon feels that if the small tumors are targeted and killed, she will be able to have a resection. So without the chemo, this all would never be possible. One definite vote that chemo works. Not for everyone, but you never know unless you try it. Please try to keep a positive outlook and never give up.

    -Pam

    #59421
    lainy
    Participant

    Dear Shlamoney, welcome to our extraordinary family but sorry you had to join.
    First I would say that Stanford is a great place, not heard of the other. To chemo or not seems to be the biggest question on our Board. If you are younger the chemo may do better and the side effects may be less. We have had Stage IV on here where chemo worked very well and they were able to have surgery, our favorite word, you know. My husband was 5 years past a Whipple procedure and we were told they could do no more and offered Palliative chemo. He asked the ONC how much more time it could buy him and the ONC said maybe a month or 2. Teddy opted for quality over quantity. Again it’s a very personal decision. I know some more family will come along and give you some advise. Best of luck on your decision and your chemo should you do it! Please keep us posted.

    #59420
    pcl1029
    Member

    Hi,

    I am an intrahepatic CCA patient,like you,without mets to lymph nodes for the past 34 months.

    May i ask how old your are? so i can have a better picture of your CCA journey.

    As a rule of thumb ,when the primary cancer(ie: in your case the CCA is the primary);has metastasized to other parts of the body(ie: in your case,the lymph nodes); The best option will be systemic treatment by chemotherapy agents since once the agents are inside your body,they go through the entire body to destroy the cancer cells even they cannot be seen on the Cat scan.
    Once the cancer in your lymph nodes disappeared because of the effectiveness of the chemotherapy;then ,in your case , RFA for the two small one in the liver and surgery for the big one is the best option to consider first.Radioembolization or will become another option if there are no other metastasis found.
    Depending on each individual’s own current health condition,the age and their own character in handling matter such as this disease; chemotherapy can work and even make tumors disappear or decreasing in sizes.But in general LIVER is relatively “chemo-resistant”, and other means like radiation should always be pursuit to increase the chance of living meaningfully .
    Cure for CCA ,in my opinion,is still a long way to go.
    Good luck and keep in touch,
    God bless.

    #6573
    shlamoney
    Member

    I have intrahepatic CC stage lV with two cancerous lymph nodes and several small lesions with one large tumor at 5cm in the right lobe.

    We are being told to use chemotherapy because there are no other options for my cancer. We have sought two opinions, (Fred Hutchinson & Stanford university) They agree on the chemo treatment. From what I have read it seems that chemo has little or no better survival rate than non chemo. I’d like to hear from those who have experience with this decision process. I’m not afraid of chemo but I find it interesting that the statistics do not show a benefit, or am I looking at the wrong literature.

    I start chemo this week.

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