Topic: general discussion

Thought I would post my new member e-mail here too!! :-)
celeste
New member
Registered: Wed, 31 Dec 2008
Posts: 1
E-mail New memberHi,  I am a new member to this site, but have been following it for a while.
I was initially diagnosed in late Feb. 2008 with intahepatic cholangio.  I had a 40% liver resection.  The surgeon and pathologist were sure the  "got" it all.    I then followed with what was to be 6 months of GEMZAR
chemo, but after 5 months I developed a lump in the hollow of my collarbone.   So, after a scan in early OCT I learned I now have Stage IV and it has metasticized to my lungs and lymph nodes and has returned to the
surgical margin area of my liver.   I was devasted, but am keeping a real positive attitude.  After that scan, I started two months of FOLFOX chemo, and a scan in early DEC showed that the cancer has not spread- I hope the chemo is working.  I am halfway thru my second two months and will have a scan in early FEB.    But, I have found so much info here and on the internet that I that I think I want a second opinion.   I did write a Dr. at UCLA- Dr. Finn and he said he would do the same treatment I am currently having, but would maybe add Avastin.    Sometimes I wonder if I should be on chemo at
all, but am scared.   I also read a study by Texas A&M and Univ of Washington and research centers in Italy regarding excess Seratonin causing an increase in Cholangio cell growth.  Has anyone heard of that?  I found the info on this site about Leptin very interesting also.  Can someone tell me more about Dr. Lenz?   I have seen his name mentioned here quite a bit.   Nice to meet you all, and thank you to the people who started this site.
I just think my oncologist is so busy with the common cancers-he does not do any research on my particular problem.  By the way,  I will be 55 in April
and live in Brentwood, Northern CA.
Bless you all-  Celeste

2 (edited by marions Mon, 05 Jan 2009 23:33:01)

Re: general discussion

Hello Celeste...as our JeffG had mentioned once: this cancer likes to play hop-scotch in our bodies.  FOLFOX has been used by members of this site and it is encouraging to hear that you have had success with it, also.  Definitely, I agree with your approach of gathering another opinion (or two).  So, welcome to our little club and I am hoping for you to receive many responses to your questions,as possible.  Although, none of us want to be here for the obvious reasons nevertheless, it is the greates community to be part of as all of us share a common goal.
Hugs to you,
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: general discussion

Hi Celeste and welcome to the best little club in the world that no one wishes to join! Not sure about the chemo stuff as my husband had radiation and cyber knife. I always feel if one is in doubt about what is happening to them and for them it never hurts to get a second and third opinion or 20 opinions until you are completely satisfied with the responses. I do know you will be hearing from a few more experienced members on this. You have come to the right place and please keep us posted.

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: general discussion

Hi Lainy,  Thanks very much for your response-  I kept meaning to sign in a while ago, but it's never too late!  The good thing is I feel pretty good- I guess I may be blessed with a good immune systme.  I look forward to all the correspondece on this site.  It is wonderfu1~ Have a great day- Celeste

Re: general discussion

Thank you Marion-  I look forward to your wonderful lines of communication on this site.  I know there it a lot of sad news, but also some good.
Have a great day- Celeste