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(3 replies, posted in Members' Cafe)

I have cholangiocarcinoma & fighting it for 14 months. When I see the publicity  and the fundraising that the celebrities are putting into fighting breast cancer it really gets to me. Why can't they be advocates for ALL cancers and make October turquoise  " fight for ALL cancers "  month and all fundraising would be put into a general fund which would go to companies consintrating on all cancers.

Hi mother from the Bronx. I have been on gensidabine and cicplatine that has done  great on my CC it has taken my tumor marker from 3,960 down to 35.8 with little side effects. They can adjust the Chemo to the person. I am going in tomarro to start a SIRT sphere process it is a radiation process that puts the sphere in the blood veins that are in the tumor. It is a high does right in the tumor and launches. If you are interested google SIRT sphere

Good luck,
Scott

Hi Margret,
I live in So. California & went to Cedar Siani in Los Angeles that has a ERECP specialist that puts in the stents. At first I tried a different hospital to have the ERECP done at the same time they  took the test sample of my tumor. The doctor could not get them in so he set up the specialist at Cedars Siani for me. The doctor put 2 stents in in July 2010 and knock on wood neither one has blocked yet.
  My Onc at the beginning was trying to be straight up with me and was not going sugar coat it. He said to start on the chemo that I am on to see if it would work for me. There were 3 other chemo cocktail he would try if this did not work for me or stopped working. He has always told me to to look into other options with other cancer facilities but don't sacrifice the quality of life you may have left. My wife and son took that as a go ahead to contact other facilities they sent all of my information to about 6 other places. The only one at the time that would see me was the City of Hope. The others did not respond or said they could not help me at this time. They said that tumor would have to shrink down to about 2.5 cm. My largest mass was 6.5 in the center of my liver with smaller ones thru out the rest of my liver. Now that the chemo is working and my tumor activity is not very active, we decided to try UCI and they are going to try the SIRT spheres.

Please tell Tom that you and he will be in my prayers. God knows what the spouses are going thru also. Please keep me in touch and let me know how Tom is doing.
Big hugs back to you and Tom
Scott & joni

Hi Marion & Lainy,
Thank you for the positive comments and the sugestions. No I can not have a resection because the largest mass is in the center of my liver and surrounds the veins and arteries. Yes I did get 2 stents put in after two tries and got really sick after because of the bile that was released. I spent 2 days in the hospital. I have talk to a few oncologists about the mystery fever and they can not explain it.

I want introduce myself my name is Scott, I'm 50 years old and I was diagnosed with CC on July 14, 2010.  I was told I had 4 to 6 months to live.  At the time my tumor marker was 3960 and at the present time it is 35.8. I have been receiving chemo Gemcitabine and Cisplatin. I have it once a week for two weeks and then one week off and it take 8 hours for the infusion.  My last PET scan showed no new tumors and very little activity in the existing tumors.  My doctors have told me I will be on chemo indefinitely because of this very aggressive cancer.  My symptoms have been pretty mild except for what I call "Mystery Fever". Starts with chills, fever and vomiting that lasts anywhere from 8 to 12 hours and then goes. I have some aches and pains the next day. It usually happens on my off week from chemo.  Has anyone else ever had this?

This week I will be going to UCI Medical Center (Orange, CA) to start the work up for SIR Sphere radiation program.

If anyone has had the SIR Sphere I would like to hear how it went.