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Jayne and Ken:
I agree with getting another opinion also. My first surgeon wanted to operate. When they finally came back with the biopsy results, I decided a 3-4 hour train ride to NYC wasn’t too much trouble if I could go to someone with more cc experience. Thankfully I found Dr. Fong, who, while taking away my hopes for surgery, told me that I would almost certainly not have survived. So I thank God I found him.
They are coming up with new treatment options every month it seems. I was on gemcitabine and oxaliplatin for 6 or so cycles. Then I couldn’t do the oxy anymore so we gave me a break for a while. When the cancer started growing again we tried gemcitabine and Xeloda. That did not work as well on the cc mutations I have. So we tried stereotactic radiation. So far, so good after 7 months. All is calm and quiet.
I call myself the healthiest sick person I know. I have occasional back pain but otherwise I’m healthy. Except for that darned cc. I play poker, sing karaoke, line dance and pretty much don’t stop (’cause I don’t want it to catch me).
As far as life expectancy, I guess I need to die now… It was about 93% mortality 2-5 years with very little hope without surgery when I was diagnosed. Sorry but I’m not listening. The outlook has gotten much better in the 2 years I’ve been dealing with this, and I say as long as I stay alive every day is one day closer to finding the cure.
I have been told by my surgeon that I will die with this. I did not say OF THIS.
Positive attitude is very important. Very difficult, but essential.
I did not drink much milk the past 20 years, but I love my cheese and ice cream. I was never told to avoid that. I do try to limit my meats and sugars now.
I wish you all the best and I agree that this site is full of wonderful, caring people and more information than you can process!
Hugs,

Morris: so sorry to hear about your moms treatment. I hope you can find some doctors that have enough expertise to try something else.
If you CAN find one to discuss radiation or chemo mobilization, that would be great. At least you can discuss it. I was a recipient of stereotactic radiation and while it did not kill the cancer cells, it has made them appear much more “normal”! I believe it will prolong my life for quite a while. So far it’s been 7 months of “quiet” cells.
Please try to find other doctors that will look at alternate treatments.
Good luck.

Patti:
Thank you for the contact info. I will be meeting with my onc and surgeon again in early March and have not had treatment since radiation in July. I am getting nervous about the lack of treatment, although the last scan showed stability. I will talk to my surgeon and onc about this study and what their thoughts are.

Jackson:
Firstly, good luck to your friend. With you advocating, it gives him more time to fight this disease.
I believe he is stage 4 because of the mets to his lymph nodes. Cc actually has a 4a and 4b but I cannot remember the parameters. We do have a few members from California and I believe 1 was treated at USC and is cancer free. I just cannot remember who that is at the moment.
Hopefully if he cannot find a local surgeon he can at least find a local onc that will work with a more cc knowledgeable onc from another hospital. I have 2 oncs: my main one is in NYC and my secondary one is in Princeton. It’s a little easier to get to Princeton when I am in treatment. He takes his “orders” from my main onc at Slan Kettering. That might be a good option depending on how things go Monday.
Unfortunately, your friend isn’t alone in the healthy dept. many of us were never sick. I never went to the doctor because I was never sick. Unfortunately, this disease is silent until its advanced.
I hope your friend likes and believes in Dr. Shelby on Monday. That’s very important, too.
Prayers for good news next week!

I am so glad Lauren is being given this opportunity!! I’ve been doing the happy dance!! I am just thrilled to hear this! I know it’s scary but sometimes you just have to believe things will work out! To be honest, I’m jealous, too. I’ll be counting down the days with you…

Chris:
I have no experience with taxotere but I will put in my 2 cents.
My first chemo cocktail was for one tumor and a couple of lymph nodes. The tumor had been biopsied. I was put on gemzar/oxaliplatin. It was fairly tough on me. I had to stop after 6 rounds due to neuropathy. I still have some neuropathy over a year later, but it’s okay. The tumor shrunk substantially and the lymph nodes returned to normal size. I went 6 months without treatment as we prepared for my resection, which was cancelled at the last minute because the lymph nodes had grown amazingly quickly and the tumor had grown, too. We tried gemzar/Xeloda. The tumor shrunk but the lymph nodes kept growing. My surgeon said cc has many slightly deviated cell structures.
I know nothing of taxotere but would suggest you ask your doc about one of the platin drugs. They have more side effects, but seem to work well against cc, either shrinking tumors or at least keeping them from growing.
I also suggest a second opinion, as this cancer is so rare.
My prayers are with your sister and your family that she gets the right treatment for her.

I am so sorry to hear of Bruce’s passing. May you find peace in the strength he showed fighting this horrible disease.

We love that word: shrinkage! Prayers going out for a good scan.