Topic: Hello

I wanted to reach out to everyone on this site! I have been following the postings on and off. I was diagnosed July of 2011 with CC at Emory in Atlanta where I have been receiving my care. I had 5 rounds of Gem/Cis, followed by a resection in December, then 3 more rounds after surgery. I was able to return to work for a few months, then had lung nodules which changed so I had a VATS with resection of those nodules that were visible. The nodules were CC mets, so after a month and a repeat scan which showed a new tumor in the liver ire started Gem/Cis. I just returned from MDACC and an appt with Dr. Javle! What a wonderful doctor he is! I was referred to him by my oncologist at Emory. So, now I will be starting 5FU/Oxal/Iriinotecan called FOLFIRINOX and then will return to see Dr. Javle in 2 months. I have not seen any postings about this particular chemo regimen, so any info is helpful! He stated that he has had a 50% success rate with this. He is also going to have my tissue genetically tested so we can look at targeted therapies. He commented that it seems that CC may have to be treated as a chronic disease and this would involve maintenance chemo. I am 50 and in quite good physical condition with a wonderful support system. I have a strong faith in God and feel that that is vitally important to have when facing life in general but especially with a cancer diagnosis! I know that God is in control of my life and right now I am to fight this with His help! I have appreciated reading the stories posted here and wanted to introduce myself as part of this amazing group of people both fighting this and those who have gone before us!

Re: Hello

Welcome and sorry you had to find us, which will be repeated many many more times. I am a CC survivor, 3 years cancer free! Please read my story at www.catherinedunnagan.com under the telegraph link, there is HOPE!!
It is very exciting to hear all the new options and chemo mixes that are being used in the last year. Since you have been following this site for a while you know MDACC is one of the top spots for CC and Dr. Javle is at the top of the list.
I had the VAT surgery in Febuary, but all was OK. My recovery was so bad though, I am still numb on my right side.
Lots of prayers and HOPE-Cathy

Re: Hello

Dear Bev, welcome to our "amazing" family, you have come to the right place. You have really run the race and as Cathy said,  Dr. Javle is at the top of our list.
If you go to our Search button at the top and type in FOLFIRINOX you will find posts on that cocktail. You have a wonderful attitude and a great support team and we look forward to hearing more about your progress along this journey. Wishing you the very best on your new game plan!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello

Hi Bev,

Welcome to the site. Sorry that you had to find us all here but I am glad that you've joined us all as you have come to the best place for support and help, and I know that you will get so much of each from everyone here!

Thanks for sharing your story with us all, you sure have been through a lot! Thats good to hear that you are now seeing Dr Javle and you sound really happy with him. It sounds like he has a good treatment plan for you and I know that you are in good hands with him. I will be keeping my fingers crossed for the best possible outcome here and please keep us update on how it all goes for you. Keep coming back here and know that we are all here for you.

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: Hello

Bev...I would like to follow the others in welcoming you to our site.
I wish the best of luck with the upcoming treatments and thought to enclose two relevant postings for your perusal.
http://www.cholangiocarcinoma.org/punbb … hp?id=7735
http://www.cholangiocarcinoma.org/punbb … hp?id=8693

Therefore, those of you on this particular treatment, your input is of great value to us.

Thanks an hugs,
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: Hello

Welcome Bev..sorry you had a need to find us.  Sounds like you have a good plan in place and I have read many good things about Dr. Javle on this site.

Good luck with your new regime.

Take care,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.