New Diagnosis and Very Lucky
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Brian….correct, adjuvant therapy follows surgery. The reason for my mentioning the questions re: adjuvant chemotherapy was based on the fact that I assumed you had clean margins i.e. no cancer cells are seen at the outer edge of the tissue that was removed (the tumor along with the rim of surrounding tissue.) If indeed this was the case, then follow-up with chemotherapy is not proven in clinical trials, but the majority of physicians recommend it regardless. This pretty much coincides with what we see on this board. We do however have a clearer answer with release of data of the 2 clinical trials mentioned in my previous posting.
Should the upcoming CT/MRI prove otherwise then of course, a next course of action must be considered.
I must congratulate you on the speedy recovery; walking 3 miles, 16 days post surgery, is pretty incredible. Given the reduced dosage you may just sail right through the gem/cis treatment, but I hope for others to chime in and share their thoughts with you as well.
Hugs,
MarionPlans are for 6 rounds of 2 weeks on and 1 week off. I think this is just to make sure that no cells have escaped into the blood stream to colonize other areas. We will have to have a look to make sure with CT/MRI to make sure nothing else is out of the ordinary.
Brian….welcome to our site. Congratulations on your successful surgery with clean margins. That is fantastic news. I can understand your reluctance of receiving adjuvant therapy, but the majority of physicians recommend some sort of treatment in post-surgery settings.
To help us understand efficacy in adjuvant settings, we are awaiting the outcome of two clinical research studies:
BiLCAP trial conducted in the UK is comparing surgery and capecitabine (Xeloda) (with surgery alone.
http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-capecitabine-after-surgery-for-cancer-of-the-bile-duct-or-gallbladderPRODIGE12. conducted in Germany, is comparing observation only to extrahepatic patients treated with gemcitabine and oxaliplatin (GEMOX)
https://clinicaltrials.gov/ct2/show/NCT01313377I was hoping for the results of the BILCAP study to be announced at the upcoming ASCO meeting, but it appears that we have to wait until fall of this year.
Based on the outcome of BILCAP, PRODIGE12 may have to be adjusted accordingly.
How many doses of reduced gem/cis are you expecting to receive and will you have a port?
Collecting and analyzing numerical data in large quantities is vital however; I agree with Lainy in that statistics can be problematic for patients trying to comprehend the odds of longevity related to a particular disease. We must remember that equation defines the mid-range of maximum and minimum values, is retrospective and reflects the outcome of passed results; perhaps those of many years ago.
If ever one is touched by this cancer, this is the best time. Cholangiocarcinoma patients are benefitting from previously not applicable treatments and we witness the positive outcomes more than ever before.
Hugs,
MarionDear Brian, welcome and know that you have come to the best place to be for CC support. I feel that you can tell your wife and daughter the truth as they deserve to know so that they can feel a part of healing and helping you. We also have a booklet that explains and answers questions and you may find that very helpful. We do NOT listen to statistics as everyone is so different and many seem to beat those numbers. We also try to remain realistically optimistic. One more rule of thumb is to get more opinions. You want to make sure that you give yourself the opportunity to have a try at different options for treatment. Many Doctors see things differently. Below is a site you may find helpful and please do keep us posted on your progress as we truly care.
http://cholangiocarcinoma.org/newly-dx/
Hello all, I’m new to all of this, so here is my introduction.
I’m a 58 yo male with asymptomatic iCCA. I’m a cellular immunologist doing research for a drug company, just not oncology research. My urologist found the “cyst” during a complete urological workup. He found a cyst in a MRI and referred me to my gastroenterologist. We did a CA19.9 with a level of 175. He referred me to the Smilow Cancer Center @ Yale-New Haven…more tests. PET/CT showed a 6 cm tumor in the left lobe of my liver, but no where else. The surgery to remove it was done 16 days ago ad I’m up and around walking about 3 miles a day. Pathology shows 3 tumors with a clear margin, so a successful operation. Next is chemotherapy to make sure there are no cells in the liver or the body. As I said lucky all around.
My internet searches are scary. But I think I’m in good overall shape; asymptomatic, healthy (OK overweight) with successful surgery and younger than some. I’m nervous about the chemo, but my oncologist says that the Gem/Cis treatments will be at about 25% of the dose for Gall bladder cancers, so fewer side effects. My main problem is explaining the disease to my wife and daughter without scaring the bejeesus out of them. I think I’m very lucky, so the statistics are almost too scary to share.
What am I missing? What can I expect from the chemo?
Thanks and hello,
Brian (becast)
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