Need advice
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I live in Sweden and am always checking out cc in europe. France is really into research into this disease. There are often drug trials and new approaches coming out of there. Like people are suggesting, please get several opinions. It is the only way to make an informed decision. But dont just discount France because it is not the US…if that makes sense!
Good luck getting information and a plan that fits you.
Kris
Oh, we have so many, I am sure Marion knows better than I but off the top of my head Mayo Clinic in Rochester Minnesota and MD Anderson in Texas. If I am right you could even fax or e mail information to them and perhaps they will consult with you that way. Not sure. I bet we will hear back from Marion!
To Lainy and Marions,
Thank you for your speedy reply. As you are aware, we are not living in a part of the world with the most cutting edge approach to this disease and it may be that treatment in the US may be cost prohibitive as we have no health insurance, but if we wanted to search for a medical opinion in the States-which hospital should we approach?Liz…..absolutely. Please, gather more opinions in re: to the treatment that is of course, if you consider to contintue with chemotherapy. Is it possible for you to contact specialists without a personal visit? If so, gather everyting you have accumulated such as, physician’s reports, blood test, scans, etc. and forward it for evaluation and advise. Make sure to have copies of everything, also. For those specialists who will prefer to see you in person, you might not need to worry about the temporary interruption with the current treament in order to be seen by someone else. I am assuming that we are talking about a few weeks at most. Others may have more to share with you.
And, I am so glad that you have found us,
MarionHi Liz and welcome to the best little club in the world that no one wishes to join. My husband is a Whipple survivor of 4 years now. The cancer returned last April where his duodenum used to be but we got it with radiation and cyberknife. I think our biggest rules on this board are to go with your gut feeling, be very aggressive (depends on age), get 2nd, 3rd, 4th opinions until you are totally satisfied. Below is a doctor who came on today and he did give his e mail address so he could help us. You might want to e mail him privately to just ask his advise. Be aggressive and hopeful!
mahipal33 wrote:
jamie thats what how the life is ., Sail in the waters smoothly no matter how the tides are . no matter how the deep waters are .we all are with or with out cc are sailing in most uncertainitis. take a postive decision. fill your soul with matrix of courage and spread happyness even in your deep sorrows amids yourself and around you . life and death are 2 cerainitis face it . me too is the victim of cc iam a doctor in gastroenterology had liver resection 14monts back not advised any chemo or radio . iam so busy involved in the practice i have no time to think myself . no body knows my disease except my wife . i dont want any sympathies . thats the way i live. funny is i myself diagnose about 3 malignancies in gastric and colonic area every day . the feelings u see in your patients and club ur own feelings . its horrible . but i will fight it out that way . dr mahipal at mahipal33@gmail.com
Hi I’m Liz and my husband was diagnosed with CC in February this year. We live in the Middle East and were told to go to France to investigate a blocked bile duct.
After an EUS was performed they found a tumour and advised that a Whipple procedure was the best chance of a cure.
We thought that they got everything although 2 lymph nodes were invaded. Adjuvant chemotherapy of Gemcitabine for 3 weeks out of 4 was prescribed for 4 months. We returned to Bahrain to start the treatment in April this year.
My husband just had a 3 month post operative scan and CA 19-9 and we have found the cancer has metastasised to liver and possibly lung.
We were following the protocol set up by France and had to spend an agonising 3 days trying to contact them foe advice.
We have been advised to continue with Gemcitabine and add Tarceva daily.
It was while researching this combination that I found this website.We are so confused because while waiting for response from France we spoke to other oncologists who recommended other drugs. The French doctor said that this is the protocol to follow, others say this is not aggressive enough.
Is there anyone to help us make a decision? Should we be looking for 2nd/3rd opinions?
My husband is due to start his 3rd chemo cycle next week so we feel unable to travel as we don’t know the consequence of delaying the chemo cycle?
Please we are desperate for piece of mind to know which protocol to follow.
Thanks
Liz
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