snezzie
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Marion,
It was clear. I somehow have to learn to put one foot in front of the other….until I know something different.
Thank you for your kind words. And of all the other caring people that have posted to me.My new Oncologist said to “expect the worst and hope for the best”…………not sure that I can do that, but I’ll try.
Snezzie
Marian-thank you for your post. I will try to calm down. A Stanford Oncologist told me that it WOULD ( not might) return in 1 year’s time and that I “certainly will not be in the 40% 5 year survival group” Her words–not mine.
My Kaiser oncologist on the 1st visit said “that it may not reutrn at all” and that I am overly anxious. But on the 2nd visit 3 weeks later, he said “in the time that I have left…he wants me to be comfortable”.
What changed between those 2 visits?
I think he read up on CC—which is why I want to see Dr Venook @ UCSF–
Thanks very much, my second CT scan since the surgery is tomorrow and I think that’s why I am so anxious.
SnezzieDale–Thank you, thank you for your post.
Please, can you tell me how long the Radiation treatment was?
Kaiser has refused my request for a second opinion @ UCSF. I must now spend precious time filing an application for an independent review with the state of California and waiting for the outcome.
It’s terrible for a patient to have to deal with this as well as the situation itself.
So, thank you again–your post was a small ray of hope.
Snezzie
Dale—reading your post just now gave me a little lift—-today has been a really bad day….Thanks.
Do you mind telling me how long your radiation treatment was? And was it done as an adjuvant therapy?Which chemo where you on?
I have got to figure out how to continue to live life while being so overwhelmed by all this.
Thanks again
Snezzie
Hi Nancy and also Missy,
I had my gallbladder removed 10 years ago-
Nancy–those twinges and strange sensations or tingling along and beneath the incision site is the nerves repairing themselves. And also the fact that now the liver just dumps bile into the stomach at random because you no longer have a gallbladder.
Physically, I am doing fine. I have recovered from the surgery.
I am to take the Gemzar and Xeloda for 6 months. It is 2 weeks on and 1 week off. Day 1 and Day 8–i have the Gemzar by IV and the Xeloda is 3 pills in the AM and 3 pills in the PM from day 1 to day 14. Then off 1 week.
I’m handling it—but this is only my 2nd cycle.
Emotionally and mentally I am a wreck—-I have been told such polar opposite medical info by 3 oncologists that I can’t see straight nor function very well.
I belong to Kaiser and am very frightened because the 2 Kaiser oncologists said such opposite things from each other that I no longer have any faith in either of them and I am trying to see someone at UCSF.
None of the 3 oncologists agree on which Chemo I should try…
How are you handling the chemo ?
Thanks very much for sending you message, Snezzie
Hi Missy,
I,too,am a new member. I had the left lobe resected 1/19/2010 and had 1 lymph node involved. I am now on Gemzar and Xeloda.
Please do keep in touch with everyone on this site.Snezzie
Hi Katie,
Thank you for your message. I am very sorry about your Dad.
I am originally from Bolton, and I do plan to go back for a visit soon.Hi Houston Mom !
I am so glad that I found this site !!!!!
I have been trying to decide whether to go to MD Anderson or not……..
But reading your latest input has made my decision and I now have the name of a good Oncologist–I will ask for your doctor !I am so happy to know of your last visit with him—what fantastic news!
Thank you everyone for your kindness and willingness to spend time and go into detail about your experiences.
I felt so alone until I found this site.
Snezzie.
Thanks very much, Margaret. I’m not educated enough to know which Chemo would be best at this time.
I’m so very glad to know that your husband is in remission.
I wish you all the best,
SnezzieThank you everyone for your replies/opinions. It is helpful to me.
Marion, I am a patient at Kaiser. The 2 Oncologists at Kaiser said “don’t do Chemo..” and the other has me on Gem/Xeloda and says to “save” the Gem/Cisplatin for recurrence.
The 3rd Oncologist is at Stanford and said do the harsher chemo (Gem/Cis).
The fourth Md is a retired UCSF Medical doctor who appears to be a genius and has said do the Gem/Cis because the Gem/Xeloda “won’t work”.
The Stanford Oncologist is a GI oncologist. None of the others appear to be very familiar with this cancer.
I think perhaps that it might be best if I see someone at MD Anderson. I have done quite a lot of research and that seems to be the place where they are most familiar with ICC.I am in a tizzy by not knowing which way to go–it’s been 5 1/2 months and every single day the topic is Cholangiocarcinoma….chemo…..I am so overwhelmed by it all.
Thanks again all you kind people for replying,
Snezzie
