Decisions about treatment
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The below Phase II study offered information on Proton Beam Radiation. I assume a Phase III study will follow: https://clinicaltrials.gov/ct2/show/NCT00976898
results:
http://meetinglibrary.asco.org/content/151769-156The Cholangiocarcinoma Foundation provides important webinars for our global patient community.
You may want to take a look at this:
Recent Advances in Adjuvant Therapy for Cholangiocarcinoma
http://cholangiocarcinoma.org/recent-advances-in-adjuvant-therapy-for-cholangiocarcinoma/Hope this helped.
Hugs,
MarionThank you for that information Marion.
Do you know if any of those studies included
Radiation at the same time?Marion, Thank you for posting those studies. I didn’t know the BILCAP study was going to present data nor did I know about the other studies.
Although the vast majority of physicians prescribe some type of post-surgery chemotherapy, we don’t have conclusive data regarding the efficacy of adjuvant therapy. We won’t have the answers for some time to come.
Three clinical research studies have the potential of changing the course of adjuvant therapy for biliary tract cancer patients.
1. BILCAP – all patients had intended curative surgery. Half of the participants received Capeticitabine (Xeloda,) the other half of patients are observed only. This study is concluded, data is being analyzed and results will be presented at the upcoming ASCO 2016.
https://clinicaltrials.gov/ct2/show/NCT003635842. ACTICCA-1 – all patients had intended curative surgeries. Half of the participants receive Gemcitabine/Cisplatin, the other half of patients are observed only. This study is still recruiting and we don’t expect data for a few years yet.
https://clinicaltrials.gov/ct2/show/NCT021700903. PRODIGE 12 – Hilar and Distal Cholangiocarcinoma patients had intended curative surgery. Half of the study group receives Gemcitabine/Oxaliplatin whereas the other group is observed only.
https://clinicaltrials.gov/ct2/show/NCT01313377 Again, study is still recruiting and it will take a few years to evaluate the data.Early stopping of a clinical trial for evidence of benefit can happen, but the vast majority of clinical research studies complete in the projected time frame.
Hugs,
MarionJust throwing in what I can here. I was told by my first oncologist that I had to start chemo before 12 weeks post surgery or “it wouldn’t work”. I had one chemo at the start of the 13th week, right after getting a port installed….and promptly threw a blood clot from my leg to my lungs, so ended up in the hospital during the time I should have received the 2nd infusion. I was told then that the chemo stayed in your system long enough that it wouldn’t matter that I missed the 2nd infusion of the first round.
Of course, we don’t know how much adjuvant chemo really does…..so if my cancer doesn’t return, we won’t know if it was because of the adjuvant chemo….or because there were no crazy cancer cells that broke loose and circulated into my blood stream.
I think it’s all somewhat of a crapshoot and the only thing you can do is weigh the odds. But, personally, if you are wanting to have the option of doing the chemo, I wouldn’t let a week or two past that magic 12 weeks get in the way of going ahead, unless your husband’s health is such that it makes it not possible anyway.
Juie T.
Dear lucky. This is the first time I read the 12 weeks but it may be that not all details are posted by members. My mom’s onc did stress she wanted to do no harm and warned that chemo was not without risks. From experience, but not a medical opinion, the gem/cis was very hard for mom to tolerate when not fully recovered from surgery. However we were in a position where surgery was unsuccessful and we knew the tumor was still there so she pushed through treatments once they adjusted meds for side effects. I hope others chime in as well.
Best wishes, CatherineTammy,
I’m sorry that I can not be of much help in this, but do know what you are going through and want you to know that I am thinking of you & Jon and hoping that what ever decisions you make they will be what is best for the two of you.
I’m hoping others who have been in your situation will be here soon with the guidance and advice that you are looking for.
Take care.
Love & Hugs,
DarlaAhh, dearest Tammy. I guessed right when I said bile duct infection, but that is this ride, only guesses. I am going to give you a simple test to do that I always gave my kids and it still works today. Tammy, no one can tell you what to do, with CC guessing is about the best we can do. Take a piece of paper and mark it pros and con. Together write down all the pros about chemo and the cons and see which list is best to follow. Is the ONC saying if you don’t do chemo and the CC returns there is no hope. Members have undergone chemo even later and had good results.
I am thinking out loud, dangerous for me as you know. If Jon is clear and that is the best news, who is to say Dr. C. is not right. How will Jon take to the Chemo, no one knows until he starts it.
Every question is so tough. Teddy opted to no chemo but he was not in the shape that Jon is.
I want to tell everyone that I met with Tammy and Jon and we had a wonderful visit. Lovely couple and I would like to keep it that way. Please give Tammy some help here as she is being torn apart by the professionals. The surgeon actually took care of Teddy in the beginning and he is tops. The Mayo ONC is tops, Mayo is good but everyone sees something different. Jon told me he is still too tired but the Docs are pushing for chemo. Please help if you can. I hope to see them again soon.
Tammy hope you don’t mind I thought I would give a push for some help.There are so many courageous and inspiring
People on this site. I am amazed at all that has been endured
With positivity and humor.I am reaching out once
Again for guidance. My husband had a roux-en y
Resection July 7, 2015 at St. Joe’s in AZ. He had klaskins tumor
And other tumors in his left lobe. We were told
Margins were negative and he was stage 2 with no
Metastasis or node involvement. There was perineal
Involvement. He has had such a rough recovery.
Hospitalized 3 more times for infections, constipation etc. by the surgeon.We then began seeing oncologists. 2,different
Oncologist recommend radiation and chemo to try to
Prevent recurrence. Surgeon not from Mayo says clear margins, 2/3
Mayo Dr.’s feel microscopic cells were left behind.
In AZ. The plan was to get him healthy enough
To undergo treatment within 12 weeks of surgery. The Dr’s told us
There is no benefit after 12 weeks because cells have dispersed.He was just hospitalized again for the 4th time
Since surgery at Mayo this time due to vomiting and fever. They
Did multiple scans, tests etc and the good news is no tumors, bile
Duct issue etc., but never did pinpoint infection cause.
The same thing happened 3 weeks ago at St. Joe’s.His oncologists want to meet Monday and
Have us make a decision regarding going
Forward with treatment or doing watchful
Waiting because we are almost at the 12 week timeline. He is not strong and we are worried
He won’t be able to handle the treatment. The Dr’s have told us
There could be irreversible harmful side effects from treatment and they really
Don’t know whether or not the treatment is beneficial. The oncologist is on the CC board, Dr. Mitesh Borad, and
An expert on this disease. I looked into MD Anderson in
Houston to see Dr. Javle but we would be way
Beyond 12 weeks by the time we get to see him even if he
Was well enough to travel.Many of you have called this a roller coaster but I would like to get off
This ride. My husband and I are not handling this well. He is having
Panic attacks and I am taking lexapro. We are beginning
Counseling at Mayo.Has anyone been in this situation and chosen not to have treatment? Any advice/guidance
Would be appreciated.
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