Xeloda for stage 2 after resection
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Lucky. Meant to say a couple of opinions. Agree w Lainy and Marion about getting a third. My liver enzymes were very elevated as my liver ‘recovered’ from the resection. It took a good six months before they started coming down and, although still slightly above normal, have leveled out. Keep up the fight! You are asking all the right questions.
Lucky,
This is indeed an overwhelming situation having CC. I had intrahepatic CC with a 5 cm tumor and one smaller one about a quarter of an inch in size. I did adjuvant chemo after the resection on Feb 28, 2014 (at Mayo Rochester) and ended chemo August 27th, 2014 after 6 rounds of Gem/Cis. I did have an offer from a relative to go to the Mayo (south) and stay at their house for as long as needed, but I opted to go to Mayo (north) Rochester because IMO they are clearly the experts when it comes to this disease. It would have been nice to go to Mayo South, because it was warm there…..and it was 19 degrees below zero in MN at that time, but Mayo north was a 3 hour drive and a better place to go IMO.
My liver enzymes were normal before I was diagnose. In fact, I didn’t have anything that was out of the ordinary in my blood tests at all. After surgery, my liver enzymes did go up….and then chemo seemed to either make them go a bit higher or keep them up. It wasn’t until this last July at my Mayo consult that my liver enzymes were all back into the normal range. All were nicely tucked into the middle of the normal ranges except for the AST which took longer to come down , but it has now broken into the high end of the normal range and I expect it will be even better in November when I return to Mayo for more scans.
I second what Lainy just said about getting another opinion from a top rated institution such as MD Anderson or Mayo at Rochester, MN., along with some other places like Sloan Kettering, etc. This is a very rare cancer and thus, there aren’t that many places which have oncologists or surgeons who have much experience with it. Even at the biggest and best, it is still a rare cancer and thus the lesser instituions just don’t have enough experience to know anyway to treat CC other than the basic old standard treatments. While your PCP may have “been” an oncologist, it’s unlikely that he has stayed on top of even the more common cancer treatments, let alone something like CC.
Hi, Tammy and Jon, in my humble opinion, unless the GP has had experience with CC he should not be offering an opinion. Again, surgery results and LABS should be put together for another opinion as in MDA in Houston. When 2 opinions are so different a 3rd is needed to see which way to go. You will keep spinning until another ONC who really knows CC becomes a deal breaker!
Hi DKillion10,
I am so glad you have had a successful
Recovery. Thank you for the suggestion.
You mentioned considering a couple options.
We only see 2, treatment or not. What are
We missing?We continue to get conflicting information.
My husbands liver enzymes are increasing
And the oncologist said probably from the
Surgery. The PCP who used to be an oncologist
Said its because the cancer is active and he
Needs to do treatment. I don’t know what to
Think. We continue to be confused and overwhelmed.Hello Lucky. Your husband is SO blessed to have such a strong advocate! I am replying as I have had a similar path. My resection and roux en y was July 16 2014. Procedure was successful w negative margins, no lymph node involvement, and one well-differentiated 2.5cm tumor removed. Recovery from surgery was tough w a couple of setbacks. Although I chose no chemo/radiation, I would suggest a couple of options before a final decision. I did want to add that a key to my recovery was nutrition/diet. I believe a major part of my recovery started when I began to eat better. I invested in a Vitamix and started with some smoothies. My favorite was a mix of frozen berries, beets, bananas, kale, and protein powder. It got me ‘over the hump’. God bless!
Lucky….. Xeloda (Capecitabine) is the pill form of the nearly identical intravenously administered 5-FU chemotherapy. .
Hugs,
MarionDear Lucky 2,
Xeloda and Cisplatin are not the same….you can search them here on the discussion boards and will see many, many posts about both. The search tool is at the top of the page by the login.
Also look through this section (Chemotherapy) at past posts to learn more as well. Take care.
MelindaHi,
Thank you for the input. This is our second opinion.
First Dr wanted to do Cflor and just didn’t
Have as much experience with cholangiocarcinoma.
My husband is 67 and we are seeing Dr. Mitesh Borad at Mayo.
He doesn’t feel my husband strong enough to to do both Xeloda and
Gemcitabine at same time so doing radiation with Xeloda first. I am just
Not sure about this since he has had so much trouble post surgery.I would love to talk to you Lainy.
Hi,
Thank you for the input. This is our second opinion.
First Dr wanted to do Cflor and just didn’t
Have as much experience with cholangiocarcinoma.
My husband is 67 and we are seeing Dr. Mitesh Borad at Mayo.
He doesn’t feel my husband strong enough to to do both Xeloda and
Gemcitabine at same time so doing radiation with Xeloda first. I am just
Not sure about this since he has had so much trouble post surgery.I would love to talk to you Lainy.
Dear Tamey, welcome to our remarkable family and the best place to be for CC support. May I ask your husband’s age? I am also wondering if the ONC mentioned starting chemo with Gem/Cis which is usually the first line of treatment. To chemo or not is a major question on this Board and I am wondering if you have thought of a second opinion. Another opinion may help you decide and will give more security. BTW I live I Gilbert, AZ and if you like I can email you my email and phone number. Below is a site you may fine helpful:
http://cholangiocarcinoma.org/newly-dx/
I know some treatments may sound aggressive but it appears that aggressive is a word that CC doesn’t like! Please keep us updated on your Husband’s progress and no need to apologize for any length of post.
Lucky…..adjuvant chemo/radiation has been and continues to be one of the most discussed subjects on our site. As mentioned by you at present we don’t have any phase III studies (treatment vs. observation in adjuvant setting) providing data reflecting the efficacy of post surgery treatments. However; nearly 8 of 10 specialists recommend post surgery treatment and this coincides with the reporting of the numerous members on our site.
I hope for many others to chime in on this much debated subject.
Hugs
MarionHello,
This is my first post. My husband has been on a whirlwind of surgery and Dr. visits. He had a resection roux en y surgery with removal of gallbladder, bile duct and left lobe of liver. Pathology reports indicate negative margins but stage 2 because of the depth of the tumors. He has had so many complications and been hospitalized for a total of 30 days in the last 2 months. He was tube fed and just began to eat because he was given mirnol . He is now eating without the Mirnol. He is finally beginning to recover but has low hemoglobin and has been transfused twice with 2 pints of blood each time. H
Sorry for the long story but wanted to give some background. The oncologist. at Mayo Clinic in Scottsdale is recommending Zeloda in pill form and radiation to in the next 2 weeks. I am scared to death of the side effects, eating, fever , hospitalization etc. I understand there is no data to support chemo and radiation after a successful resection but it may prevent a recurrence. I am wondering if he should have chemo and radiation or not and that this would damage the liver he has left. Any thoughts and information would be appreciated.
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