1

(20 replies, posted in Introductions!)

Thanks for all the info. Theo, my husband is feeling ok at the moment. He's been taking Tarceva for a week now and is due to restart Gemcitabine tomorrow.
We are still searching and contacting, hoping for reassurance.

Will keep you informed,

Liz

2

(20 replies, posted in Introductions!)

My husband wants to consult with some doctors in one or two of the US major cancer centres.

Can anyone give any names of doctors who would be willing to consult over the phone?

And how we go about setting it up re payment etc

3

(1 replies, posted in General Discussion)

My name's Liz and I have just joined this family.
I am probably on the wrong thread but I have read with interest about supplements that people are taking, like IP6 etc.
I managed to get hold of milk thistle but I can't buy the other supplements here in Bahrain and wonder if someone can tell me the best/cheapest source who will ship abroad.

4

(20 replies, posted in Introductions!)

To everybody out there, thank you, thank you, thank you.

You have become the calm in the storm.
We have spent many sleepless nights worrying about this wretched situation. We are running like headless chickens as if every hour counts.

I understand that trials are ongoing but where is the information on results of trials that are completed? What do the oncologists base their protocols on?

Danielle - where can I find the literature coming out of France? The centre that my husband had his surgery was Paoli Calmettes in Marseille....does anyone know about this hospital.

Because Bahrain (where we live now) couldn't give a diagnosis, we went to Paoli Calmettes on our GI's recommendation. We flew out within 3 days of being told that he needed an EUS to diagnose the problem as no-one can do this procedure here. We can not speak French which proved  difficult for us both and stayed there for 2 months while my husband recovered after the Whipple.  Everything happened so fast that we did not have a chance to do any research to determine where the best place might be.

After reading your posts I think we have to try to relax and go with the treatment suggested by our original doctor as it seems that there is no established "guaranteed" combination of chemo drugs. We were concerned about whether this combination is the latest recognised treatment.

When we asked our French doctor about Cisplatin and Gemzar he said that Cisplatin had very many complications.

My husband is in good health at the moment And I really want to keep him that way as he has to have a good quality of life at the same time as fighting this disease. Our eldest daughter is getting married on 1st September in Cyprus and I want him to dance at her wedding!!

I've prattled on long enough.

I'll be on this site daily to keep my spirits up with the knowledge that I/we are not alone.

Liz

5

(20 replies, posted in Introductions!)

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?

6

(20 replies, posted in Introductions!)

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