Topic: New member diagnosed 1/18/208

Hi to All,
What a wonderful site.  I am so excited to have found help.  I was diagnosed with CC January 18, 2008.  What a shock as I have always been a very healthy person and only 58 and 1/2 years old.  My local surgeon referred me to University of Pittsburgh Medical Center, Pittsburgh, PA.  The most wonderful and brilliant surgeon in the world performed my surgery February 14, 2008.  I was one of the lucky ones in that Dr. Gamblin told me he was able to remove all of the tumor and get clean margins on both ends.  He removed 60% of my liver and removed my gallbladder.  Again I was lucky that my pancreas was not involved or any of my other organs.  My problem now is that my local surgeon and local oncologist can't agree with my Pittsburgh surgeon and Pittsburgh oncologist about chemotherapy and radiation.  Local says I need it, Pittsburgh says 'maybe not'. So far I haven't had any treatment beyond the surgery.  I am waiting for a PET scan to decide one way or the other on additional treatment.  I feel great now and have great hopes for the future.  BUT my local surgeon has assured me, in no uncertain terms, that anyone who gets cholangiocarcinoma dies from it.  After he cold heartedly told me that, I kind of feel like giving up.  I would appreciate any information anyone wants to share about how long I might expect to live and if anyone else has survived without chemo or radiation.    Thanks everyone.

Re: New member diagnosed 1/18/208

Local surgeon is wrong. The statics arent good, but people do survive. Tell him to put that in his pipe and smoke it. smile

Go to pubmed and look at some of the papers. New thinking i that those that get chemo and radiation do seem to do better. But that being said, the cancer does come back on people who had them. It is such a personal choice.

Now how long do you expect to live? There is no right answer and some people live years and some unfortunately not. Some people have no reoccurance after 5 years, some it comes back in 5 months. There is no answer for your question. As my lovely surgeon said "Everyone wants to know when the 62 bus is going to knock them down, but there are no answers" (Silly man, now I have dreams about the 62 bus) I plan on hanging around for years to come. I promised my husband matching walkers and I will do my best to get there which is about in 40 years. I am 18 months past surgery (as is Scragots) and we are both cancerfree and loving life. I didnt have chemo as their was a mix up when I transferred hospitals, though I really wish I had had it.

Anyway, cc is a beast. You cant have the answers you seek because they are not there. There is plenty of heartbreak, and plenty of hope. I do believe however that something is going to come along and help all of us soon. There are new drugs and new trials and new therapy ideas that we need to hold on to hope for. Until then, enjoy life as much as you can.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: New member diagnosed 1/18/208

Kris, once again what a great post!  knowledge is definitly power but that does not mean it provides all the answers.

4 (edited by JeffG Tue, 17 Jun 2008 11:19:52)

Re: New member diagnosed 1/18/208

Kris, I loved your post ! It just push one of my buttons! I personally just want to add... a news commentator concerning Senator kennedy Said something to the effect that currently most surgeons /doctors are thinking and practicing current protocol and don't seem to be able to break the training mentality of their training /internship.  However when the pressure increases from patients and younger generation doctors your going to see changes in treatment ,more out of the box thinking and highly more proficent methods of managing and possiblally curing this crap.  If it was happening now by more of our current doctors alot more people would be staring down this cc with alot more confidence.  Each doctor should be doing individual DNA and gene profiling and repair or circumvent the broken link, not just pumping chemo and radiation hoping for the best.  There currently shooting in the dark(some not all) We keep saying it is so individual well do I have to say  more.  My Onco has been trying everything but has not profiled me as and individual.  This will be a awesome topic when I see him next.  My body is missing something or has to much of something that is causing the disruption and they'll never know until complete dna /gene workup is accomplished so a repair can be done.  It's like using a diagnostic machine to figure out why your automobile won't run.  There is some organization on the west coast , a scientist who does this work and can find the faulty link(s). I've been tryng to locate again but having problems.  He analyzes everything and sometimes I remember it to be a liver fluke parasite that can be killed will injection of an antidote.  Like being biten by a poisonus snake that causes continuos inflamation and cell grow until the anti venom is given.  I'm going to make calls to scientific laboratories and see what it would cost, lord forbid we know the insurance companies won't cover something like that.  Well, as kris says have to remain positive and hopeful, but we need to start thinking outside of the box if our doctors are stuck in the mud and not dealing with us as individuals.  Oh yes I just went of on a tantrun but if we knew the missing link ,we would have a hell of a lot better chance correcting it with other conventional meds.  Maybe I need to just eat 30 bananas a day or stop drinking out of alumin cans. I think the answers individually is so close in front of our eyes and we have not been screened properly/ scientifically, just blood work to verify yes or no.  I not going to doubt myself. I might have to move and live at a different altitude to correct my problem. I'll stop now with my ramping and raving.  But I am going to go scientific enternal, and eco external and see what happens. Do ya all think I'm nuts or what?  Something I keep doing has held me around this long. What the hell is it?  Please excuse my French,German or swedish however you want to put it.  If anyone knows of a great scientist or laboratory please let me know.  I want to know what is deficient or to abundant and balance it out. I want to find the missing link! Cheerio for know!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

5 (edited by marions Tue, 17 Jun 2008 20:02:54)

Re: New member diagnosed 1/18/208

Hello and welcome to our site and congratulations on your successful surgery.
It is my opinion although, the application of chemotherapy and/or radiation has shown an increase in longevity for CC patients however, it has not been clarified as to whether some patients, post resection,  have benefitted from adjuvant chemotherapy specifically, those patients who are not demonstrating any visible metastases including, the patients without cancer invasion of other organs.  Again, this is my opinion, only. As far as I know and I am sure to be corrected should I be wrong in expressing  that Jeff has been treated with a variety of chemotherapy agents only, within the last three years following the initial CC diagnoses, which occured nine years ago.   Also, Peter whom I believe to be five years post resection also, did not receive chemotherapy excluding, a short stint with Xeloda, one year ago.  It would be beneficial for you to be reading their posts as you may notice the different approaches taken by either including, learning about the integration of significant dietary changes in to their daily life.  As you have experienced already, the opinions vary greatly within the medical community.   This site will expose you to a wealth of information shared by patients and caretakers alike many, of whom have chosen to follow up with a chemo agent whereas others have not.   Presently, information in re: to CC is limited however, I believe it to be of importance for you to be gaining as much knowledge as possible in order to make informed decisions regarding any further treatment, at this time. Besides, the most wonderful people in the world have gathered on this site.
Wishing for the absolute best,
Marions

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: New member diagnosed 1/18/208

Welcome Gallatk,  Great news about your surgery!  My advice to your local surgeon is to take a hike!!!  He is definitely out of the picture!  I had resection and gallbladder removed in 1999.  I'm still here! Tell him to put that in his pipe and smoke it!  I did not start chemo until approximately 6 years after my recurrence which if had been removed initially I would not be doing chemo now.  It's different for everyone and you press on living everyday planning things to do tomorrow and a month or year from now.  I would, like Marion mention become knowledgeable and be prepared. But by all means press on with life. Monitor with scans and take actions if something ever does show up.  I'm glad to hear they removed your gallbladder as well.  It is probally the biggest trouble maker of this disease to begin with.  Again, welcome and feel free to ask any question s.  Take time to browse through the whole site.  Please excuse some of my post as like the most recent one I tend to go off brainstorming and have a little vent now and again.   Will look forward to your posts in the future.  This site has been super.  You don't have to be bashful at all.   Wishing you the best!
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New member diagnosed 1/18/208

gallatk,
   I was so glad to read your post. My husband - Butch - was diagnosed in March of this year, and we went to the Mayo Clinic. They told him they could not do a liver resection, as the cancer had mets (here we go again!) to the abdomen, in addition to the liver tumor. Well, after we came home, I wrote the University of Pittsburgh, and Dr. Gamblin responded. After reviewing all the data - I sent him cd's of all the tests, the medical record, etc., he is seeing us on the 30th for potential surgery the next week. We are very happy for this opportunity, and are hoping nothing has changed , so that he can perform the surgery. We are having a hard time waiting until the 30th, I can tell you, as he had to stop chemo for a month in order to go there. Because of the metatasis, Butch will be returning here and having , at least, chemo - maybe radiation also, don't know yet. From all my reading, chemo after surgery seems to be a good idea - just in case. I don't know, of course,  all of the ramifications of that decision, but I know chemo has many unpleasant side effects, and there is much disagreement in the medical community about its effectiveness. I am so happy for you - that you were able to have the surgery, and wish you all the best. The wonderful people here will be available for you, I assure you, and help with the many questions that we "newbies" have!'

Re: New member diagnosed 1/18/208

Jeff, if you hear who is doing research on the West Coast, please let me know.  I'm in the Seattle area and I'd like to do what I can to help him out.
Thanks.

Re: New member diagnosed 1/18/208

jclegg,
Very happy to read your post.  Since this is the 30th, I am praying for Butch to get good news from Dr. Gamblin.  This is the man who saved my life and I can't say enough good things about him.  He is gifted and brilliant with personality plus.  If anything can be done, he will know.  Please let me know what happens.  This site has been a life saver for me.  I felt so isolated before.  We all need to stick together and share experiences, information, hope and prayers.  Best of luck and God bless.
Theresa

Re: New member diagnosed 1/18/208

Welcome to our little but elite community. My husband had a Whipple surgery almost 3 years ago at the age of 72. It was contained in his bile duct valve. They also took out the gall bladder and his duodenum with a resection. It has just appeared now where the duodenum used to be. HE is going for a PET can today and if no other hot spots hopefully will have Cyber knife surgery, the newest non-invasive form of surgery. This started out only for brain cancer and they are now using it on liver and other organs. This cancer is unlike others so unfortunately the same prognosis and forms of treatment do not apply to everyone. The surgery was done in Wisconsin while we were vacationing and all follow up has been done here in Phoenix. All doctors in both cities told us that chemo and radiation will not work on Teddy's type of cancer. They are also against doing another surgery as it would be similar to the Whipple. We are hoping the cyber knife works. Right now fighting insurance as they sound like they have not heard of it!!! No one expected Teddy to come this far. Everyone and every case is different. The important thing is to get more opinions until you are satisfied with how you are being directed. It is also important to stay hopeful and stay strong. Best of luck.   Lainy

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: New member diagnosed 1/18/208

Theresa,
   It is now the 2nd. We have temporarily returned from UPMC. I LOVE Dr. Gamblin - you are right, he is terrific. He is going to operate on the 15th of July - liver resection, removing the right lobe of Butch's liver, and cut out those lymph nodes in the diapraghm which have the "metanasties". He will come home and have chemo - don't know about radiation yet. We feel like we have a new lease on life - a shot at success. The tumor is 8.2 centimeters, so - it is not small, and there is metatasis, so this is really scary, but - God is good, and we are going to go for it. We attribute the fact that the tumor was growing at a REALLY fast clip, and didn't grow (only 1 centimeter) betrween Mayo and UPMC to the change in dietary habits that we have made (LOTS of changes), and the 3 weeks of chemo - gemzar and xeloda - that Butch had.

To all the other people who are struggling on this board - I say - press on - there IS hope.

Joyce

Re: New member diagnosed 1/18/208

Joyce .... Glad to hear Butch is getting surgery done . Wish you guys only the best!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New member diagnosed 1/18/208

Hi Joyce,
Great news about Butch's upcoming surgery.  I am so happy for both of you  that you have hope again.  It is also wonderful that you loved Dr. Gamblin as much as I did.  He is the best.  Unfortunately, I had some bad news.  My PET scan of 6/23/08 showed disease still in the surgical bed.  I start chemo on the 14th.  I am more than a little scared but keeping a positive attitude.  Reading the posts on this site has helped me tremendously and I don't feel alone anymore.  I will follow your recommendation and PRESS ON.  Please keeps all of us updated on Butch's condition, especially after surgery. 
Theresa

Re: New member diagnosed 1/18/208

Theresa,
   Sorry to hear about your bad news, but - hopefully the chemo will take care of it for you. We will be following your postings here, and hope to hear good things.

Joyce