Total resection

Discussion Board Forums Introductions! Total resection

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  • #39007
    lsisman
    Spectator

    My husband’s oncologist said that 5FU has the best results for chemo for this type of cancer. No other options were given. What I find amazing is how everyone is put on something different, or a combo of things and different lengths of time. You could think they all would have the same info and treatment would be very similar. Or is treatmetn different if it is a liver resection, or a whipple, or pancreatis partial removal….Also was told chemo doesn’t really work, but enables radiation so you must have chemo WITH radiation . And radiation and chemo should be a must after CC surgery as insurance to get any microscopic cells if lymph nodes infected or not. People who didn’t have radiation or anything, and had clear margins. GOT IT BACK!. What I have also found is that this CC affects everyone different, meaning you think you are a close match to someone’s similiar case/story but treatment varies and recovery issues vary and some live and others don’t. It can make your head spin. Drives me crazy.

    #39006
    linda-z
    Spectator

    Missy,

    I want to welcome you to our “family” and echo Katie’s opinion that this is the “best support board in the world”. We do have world-wide members and the knowledge we exchange is tremendous.

    Also, my experience is similar to yours in that I had the entire left lobe removed (+ some of right for a total of 40%) and many lymph nodes and gallbladder removed. My surgery was April 1, 09 (April Fools Day), and I was back to work in 8 weeks. More than a year later, I still have an area that is numb, but I know from a previous c-section that it happens, and you will experience many feelings there as the nerves heal and all that was done inside also heals.

    Congratulations for being cancer-free! Keep up the fight and continue with your doctors being diligent on follow-up CT scans. Early detection is a very big weapon against this cancer.

    Dale…..congratulations to you too for being cancer-free for 6 years! It really does give us all tremendous lifts to hear these kind of stories.

    I’ve seen many doctors give differing opinions of treatment. My onc. has said there are a number of chemo meds that they treat this cancer with. So it doesn’t necessarily say that one is better than the other, it just depends on how your body responds to each one (and each of us reacts differently). Don’t get discouraged if one regiment doesn’t work, because there are a number of them and maybe you will respond to the others.

    An observation that I have noticed is that many Drs. are more aggressive in their treatments. I was on Gemzar / Cisplatin for 3 months and then Oxalyplatin / Zeloda for 3 months, when it seems others have been on a higher dose and for longer time. Is one better than the other? We just don’t know. I am waiting for a referral to get my next round of CT scans done, so I will see what happens next.

    Everyone just needs to become aware and educated, because it CAN change everything if you know as much as you can. Also, I feel that it helps if medical staff knows that YOU are educated in treatments too.

    Linda Z.

    #39005
    dmeek
    Spectator

    Snezzie – I actually just posted a reply to your Intro story, with answers to all these questions. Thanks – Dale

    #39004
    snezzie
    Member

    Dale—reading your post just now gave me a little lift—-today has been a really bad day….Thanks.
    Do you mind telling me how long your radiation treatment was? And was it done as an adjuvant therapy?

    Which chemo where you on?

    I have got to figure out how to continue to live life while being so overwhelmed by all this.

    Thanks again

    Snezzie

    #39003
    dmeek
    Spectator

    Welcome Missy! I had a similar cancer story as you. I was diagnosed with CC in 2004, at age 46. Had liver resection with 75% of my liver removed, including my gall bladder. I had follow-up chemo and radiation for 6 weeks. I continue now with annual check-ups, and in May this year was my 6-year anniversary, and I am a survivor like you! I wish you continued success in your journey as a survivor, and look forward to your postings! … Dale

    #39002
    lulu07
    Spectator

    Sneezie
    Thanks for posting. I’m sorry to hear that u have 3 different Drs that are not on the same page. My surgeon who is at Mt. Sinai in NYC recommended my oncologist to me it was never a question who I would see and I feel I’m in excellent hands he to is in NYC not far from where The World Trade Centers were. I’m handling the chemo well no nausea, no hair loss, very surprised at that but I was prepared to deal with it. I have a double port-a-cath in my chest on the left side I go 2 days in a row take home a pump for overnight chemo. Thanks for addressing the rumbling underneath my scar it makes total sense, sometimes it is numb and tingly. The only thing I’m very sure of is that chemo is essential after surgery maybe there is someone on this site who knows of an ocologist who has treated patients with CC in your area. Please keep posting. Thanks Nancy

    #39001
    snezzie
    Member

    Hi Nancy and also Missy,

    I had my gallbladder removed 10 years ago-

    Nancy–those twinges and strange sensations or tingling along and beneath the incision site is the nerves repairing themselves. And also the fact that now the liver just dumps bile into the stomach at random because you no longer have a gallbladder.

    Physically, I am doing fine. I have recovered from the surgery.

    I am to take the Gemzar and Xeloda for 6 months. It is 2 weeks on and 1 week off. Day 1 and Day 8–i have the Gemzar by IV and the Xeloda is 3 pills in the AM and 3 pills in the PM from day 1 to day 14. Then off 1 week.

    I’m handling it—but this is only my 2nd cycle.

    Emotionally and mentally I am a wreck—-I have been told such polar opposite medical info by 3 oncologists that I can’t see straight nor function very well.

    I belong to Kaiser and am very frightened because the 2 Kaiser oncologists said such opposite things from each other that I no longer have any faith in either of them and I am trying to see someone at UCSF.

    None of the 3 oncologists agree on which Chemo I should try…

    How are you handling the chemo ?

    Thanks very much for sending you message, Snezzie

    #39000
    lulu07
    Spectator

    Hi Missy and Sneezie
    I was diagonosed with intrahepatic cc in Oct 09. This is a little bit odd but I had surgery on Jan 19,2010 also. I had my right lobe removed 2 lymph nodes 1 positive for ca the other negative and my gallbladder. I’m now doing 6 month adjuvant chemotherapy receiving 5 different drugs I know I am being given gemzar, oxaliplatin and 5-FU I believe that is fluourinol plus 2 others I go 2 days in a row and then have a week off. Had a clear Ct Scan in April and go for follow up at the end of July. Please keep posting both of you. Snezzie how long r u going for chemo and Missy how long was your chemo? Both of you as well as everyone on this website who is dealing with this disease in some way is in my thoughts and prayers everyday. Missy I know what u mean about thinking something is going on inside your stomach lots of weird feelings, and pangs I to am anxious about these things but as my PA tells me I’am healing from a major surgery and should expect these things. That does make me feel a little better. Nancy

    #38999
    snezzie
    Member

    Hi Missy,

    I,too,am a new member. I had the left lobe resected 1/19/2010 and had 1 lymph node involved. I am now on Gemzar and Xeloda.
    Please do keep in touch with everyone on this site.

    Snezzie

    #38998
    katieloumatt
    Member

    Hi Missy,

    May I send a huge welcome to the best support board in the world!! Not that I am biased or anything…

    Congratulations on your recovery. Please come back here often and update us.

    Katie

    #38997
    gavin
    Moderator

    Hi Missy,

    Welcome to the site, although I am sorry that you had to find us all here. And thank you for sharing your story with us all and I am very happy to hear you say no sign of cancer! Waht great words to hear and long may that continue!

    Please keep coming back here as you will get a ton of support from everyone here.

    My best wishes to you,

    Gavin

    #38996
    lainy
    Spectator

    Hi Missy and welcome to our family, you made my day! YEA! Another survivor. Your attitude is fabulous and I have a feeling you scared that sucker away. Good for you. Keep up the good work. Don’t know if, after having CC that the fright ever does leave. You might want to ask our Dr. Giles at the top of the page if he has any suggestions. Just type his name in the search engine. I bet some other family members are going to come along as well and offer some sage advice. Are you following a regime with the Oncologist? Please don’t be a stranger and let us know how you are doing.

    #3652
    missy
    Spectator

    Hi i am new. Been using this sight since November 2009. That is when i found out i had cancer. Surgury in December 2009 to remove the entire left lobe, a lymph node and gallblatter. took chemo (gemzar) and now back to work full time. no sign of cancer. but still scared of every pain in the rest of my liver. I am 45 married for 21 yrs, and 3 children! I am a lover of life!!

Viewing 13 posts - 1 through 13 (of 13 total)
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