Topic: Trying to decide on therapy

I am new to this discussion board.  I was diagnosed with choloangiocarcinoma about 6 weeks ago.  I had a resection of the common bile duct and gallbladder (EHCC).  I have a T3N1 score.  I have been given a recommendation for Gemzar/Cisplatin chemo and radiation with Xeloda and a recommendation for Gemzar/Xeloda chemo and radiation with Xeloda (SWOG Clinical Trial).  I am interested in anyone's experience with either of these protocols.

Bill

2 (edited by marions Tue, 06 Jul 2010 17:26:36)

Re: Trying to decide on therapy

Hello Bill.  Congratulations on the successful resection and welcome to our site.  Although, all agents have been used by our members or their loved ones either, as a single treatment, or in combination with one or the other, we have less postings re: adjuvant treatment with the mentioned agents.  I am hoping for those who do or have completed the above protocol to come forward and share with you their experience.
I don't know how much information has been given to you by the physician regarding the SWOG approved clinical trial however; I wanted to share a link with you re: clinical trials. 
http://www.cancertrialshelp.org/Icare_c … tAppMode=9
Additionally, we have much information in the clinical trials section of our website.
Also, our Google function, lead by key words such as Xeloda, or Gemzar, etc. will take you to previous discussions regarding these specific agents. 
Good luck and I am looking forward to hearing from you.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Trying to decide on therapy

Bill,
I, too have the same staging as you do. I had a resection 1/19/10.

I have the same question as you. Please read the posts that people have sent me. It may give you a bit of info.
Many people have been very kind and have described their own situations post resection.
I am going to UCSF tomorrow to see Dr Alan Venook for the same question that you posted.I will let you know what he says.
My Kaiser ONC says Gemzar / Xeloda.  A Stanford ONC said Gemzar/Cisplatin.
Neither one mentioned adjuvant Radiation.
It's all so very confusing.
I won't be able to post anything until Monday.
Snezzie.

Re: Trying to decide on therapy

Sneezie....good luck with your visit tomorrow. 
And, best wishes.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Trying to decide on therapy

Hi Bill,

Welcome to this site where you will find a wealth of information.  I have said it before, wealth is power. 

I also had a resection and gallbladder removal, but had a lymph node involved that was removed and another tumor that was just burned (other side of the liver from the resection).  I was on Gemzar / Cisplatin as well as Xeloda and Oxalyplatin together.  I tolerated both regiments very well.  BUT I did not have radiation therapy and actually should have.  My tumors have returned and NOW they may decide to do radiation thereapy (hoping for Proton light beam therapy). 

You didn't say if you had any lymph node involvement or if there were other tumors.  My doctors insisted that they got "clear margins" around everything (resection, lymph node removal and burned tumor), but they returned and have metasized to my lungs.  Ask your doctors about why they want to do radiation.  I would highly suggest doing as much as you can before the liver regenerates and other organs move into the area again.  My opinion (and I'm not a doctor by any means), is to hit this cancer with everything to keep it from coming back.  Once it comes back, its a different story.

Absolutely check our search feature to see how many have experienced radiation, and the 3 chemo meds you mentioned. Everyone reacts differently to things though, but at least you can see what you might expect.

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Trying to decide on therapy

Hi Bill,

Welcome to the site. I can't help you with your questions about chemo, but I just wanted to join in with the others in welcoming you here. I am sure that will get the experiences of what some have been through with regard to these treatments. Feel free to ask as many and all questions that you have regarding anything and I know that someone will be able to help.

Good luck with everything and my best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Trying to decide on therapy

Hi Snezzie,

Good luck with your app with Dr Venook tomorrow, I hope it all goes well.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Trying to decide on therapy

I don't wish to upset anyone, each of our cases appear to be different, yet somehow that very difference is what seems to link us together......
This is in reference to having a clear margin,yet local lymph node involvement. ie, Stage 3, LN 1.Post Resection.
I am on Gemzar/Xeloda.  BUT, It seems that the "Gold Standard of Care" would be Gemzar/Cisplatin. This was told to me by Dr Cheryl Cho @ Stanford and Dr Alan Venook @ UCSF and 2 other very prominent MDs in the Oncology field.
Dr Venook said that in my case, due to the lymph node involvement, radiation would be a case of "the horse already left the barn"....as in no point to do radiation at this time.
I have just returned from Evanston, Illnois--I saw DR Keith Block and he has given me some hope.  Please Google him.  and also read Andy's post under Alternative treatment.
Best wishes, Snezzie

Re: Trying to decide on therapy

Hi Bill,
From what I can gather Gem/Cis is the standard care for recurrent or metastatic CC.  There is no standard established for adjuvant therapy following successful surgery - my dad is currently on the BILCAP trial comparing Xeloda with doing nothing after surgery.

Radiation has hardly been mentioned - one onc said 'if surgery is successful there is nothing to irradiate' but I think it's a matter of opinion and I'd encourage my dad to give it a go if it was offered.

Your recommendations sound to be the same except you would not be taking the Cisplatin with the trial, but instead more Xeloda?  Is that right?  I believe Xeloda is usually more easily tolerated, but I'm unsure about effectiveness of Gemzar if not combined with Cisplatin.  Which trial is it you have been offered?

Good luck with your decision - I agree with Linda in that I'd want to give as much as I could a go to try to stop it coming back as recurrence is a different story.  Congratulations on your successful surgery.  It sounds like you didn't need a whipple which is encouraging?

Kate

Re: Trying to decide on therapy

Snezzie,

I had one lymph node involvement, and was also told that treating with just radiation (or PDT, or proton light beam, etc) without doing something systemic, would really not help much.  Yes, the tumor you are treating would be treated, but since there was lymph node involvement, you never know where the cancer may turn up next.  Maybe if there were no signs of new cancer yet, I might think that radiation could be an option until something might show up.  But I would think they would still want to try something systemic just in case the cancer did spread through the lymph nodes and you don't know it yet.

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Trying to decide on therapy

A physician explained to me the following: The hundreds of lymph nodes in our bodies act as sieves. They collect particles contained in the blood. Therefore whatever found in the lymph nodes is guaranteed to be travelling in the blood stream.  Will these minute cancer cells settle somewhere else?  No one knows. 
Seems that a few years ago most physicians shied away from adjuvant therapies however;  at the present I am noticing a shift in that trend. 
I just wanted to share this tidbit of information. 
Best wishes to all,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Trying to decide on therapy

Always get radiation with chemo. My husband's doctor said chemo is an enabler of radiation, but you want to do anything you can so it doesn't return. If it does return, at least you will not feel sad that you did chemo and not radiation. Seems so many are told only chemo, no radiation, and cc comes back. Take a double wammy upfront and coast.

Re: Trying to decide on therapy

Dear Linda, I agree with both you and Isisman----I have asked 2 Kaiser Oncologists for adjuvant Rad Tx and hey both refused me===saying "what are we supposed to radiate?"
Can anyone suggest to me what I should say/how should I insist upon having Rad Tx?

Re: Trying to decide on therapy

Snezzie....Had you spoken with Dr. Venook about this?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Trying to decide on therapy

Marion,

It was Dr Venook who said that it was a" matter of the horse already leaving the barn......."
His opinion is that there is no point in any Radiation treatment since it already went to the lymph node.
Both he and my Kaiser Oncologist say that I should stay on Gem/Xeloda-----even tho they both say that I should have had Gem/Cis.instead.

16 (edited by marions Fri, 16 Jul 2010 11:07:04)

Re: Trying to decide on therapy

Snezzie.....I often compare this disease to a burning fire.  It can be doused with the hope that it can be extinguished.  Should flair up occur, it then it will be addressed.  If Gem/Xeloda is keeping everything in check then why change something even though, it shows to have positive results?  Lymph node involvement attests to the fact that the cancer is systemic however; flair up cannot be predicted.  Let's stay positive and hope for these unwanted cells to be destroyed with the current treatment.  And, watch out cancer cells Snezzie; has something else in her arsenal.
Snezzie.....With the inland areas of the Bay Area heating up I notice a mass exodus, going north, on Fridays.  Does anyone stay in San Francisco in June and July? 
I am sending my best wishes your way coupled, with tons of hope and positive thoughts.
Stay well
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Trying to decide on therapy

Thanks for all the responses.  I am going through my chemo/radiation therapy with doctors at the University of Colorado Anschutz Cancer Center.  I have started with Gem/Cis for one cycle of 2 on, 1 off.  Then I will have IMRT radiation with Xeloda, 5 days a week for about 5 weeks.  We will take several weeks off and then return to the Gem/Cis.

Everyone's comments have been very helpful. 

Sneezie, good luck.