why x-ray with MRI

Kathyb, I got your e-mail and I sent one to you. Maybe, you did not get mine. I will see if I still have it and send it, again.

Hope all of you have a good week-end.
Theresa

Kathy. I was beginning to worry about you since you had not been around.
I have had a good week, nothing special but thanking God for each day. Next week will be a busy one for I have appointments with three different doctors.
Marions, I’m like you, I want to be sure to get all the opinions that I can. Lainy, we will be anxious to hear about your appointment tomorrow. Hope it will be good news and that you will get some answers.
Best wishes to all of you.
Theresa

Why thanks Kathy. I hate to come here with my “stuff” as that is not what I am here for but I like to keep “my friends” in the loop who have known me for some time. Guess it might help someone else though, so here goes.
For about 3 years I had been having stomach problems. Bloat, a little nausea, tiredness, not being “regular”. Then last Spring it got worse and by September I had begun to loose weight, more nausea (just the feeling) sleeping all the time and I would start to eat and felt full. Of course all that time I felt it was stress for all we go through with the CC. I finally went to a Gastrointestinal man, and when he felt my tummy I could see his facial expression change and he sent me to a Surgeon. Had a CT Scan and it showed a 10cm tumor on the left side of the colon. I was scheduled immediately for October 1st but the surgeon called for a Colonoscopy to be done the day before surgery. The Colon. showed that on the right side of the intestine polyps and another tumor! IF I had not had the colon. I would have had 2 separate surgeries to remove the 2 tumors! I think my dad was watching over me! The tumor and polyps on the right were benign but the tumor on the left was cancer and is called a GIST tumor. It also is a a rare one more so than CC. 50% chance of return and there is not much you can do. It was a big surgery with a week in the hospital. I am fine now, too busy taking care of my little Sicilian. We go to the ONC together every other month and our next date is Friday. Then we both have PET Scans every 3 months. I tell people we are having a Rare Cancer Dance but its OK as long as we dance to the same music. I will be posting about us again after our Friday visit. Lots to discuss with the ONC as I am not happy with Teddy’s Radman! And that my friend, is our story. And ATTITUDE IS everything!

Isisman……5-FU has been used for many years however, the Gem/Cis study was the largest study ever conducted on Cholangiocarcinoma patients. This does not mean though that other agents are not still being used. The oncologist will make his/her decision based on several factors. I am a strong beliefer in multiple opinions as specialist disagree with their approaches.
Best wishes are coming your way,
Marion

Lainy, I will be anxious to hear what you learn from the doctor on Friday. I was told cyber knife would not work on me. Although I have two large tumors but I have numerous small ones and cancer in the bile duct, so maybe, that is why. I talked to the P.A. at Dr. Demanes’ office to see that they have all my tests. She said something about that he wanted to see me before scheduling me. When I questioned for what, then she backed off, so I am not sure what he has in mind. I’m glad that Teddy is still in good health. I was eight months ago, but now I look like skin and bones. I still feel good and have almost as much energy, but I don’t look very good.
I may have to add red meat and potatoes and pasta to my diet for I am not putting on any weight. I need to learn more about brachytherapy before I meet with him next week. Isisman, what kind of treatment has your husband had? Marion, thank you for your good thoughts. I will surely let you know what I find out meeting with Dr. Demanes.
Best wishes to you all.
Theresa

Hi Theresa….Teddy has never had chemo…he had radiation and cyber knife. After his Whipple (4 1/2 years ago) 4 different doctors said chemo would never be an option for his CC. The radiation was used to shrink the first tumor to reappear to ready it for cyber knife. A year later after zapping that one these 2 appeared. My question Friday will be, if one is growing why are we not doing something about that one. Another funny thing is he went for a Physical to the VA Saturday, his first as he was in the Korean War but never wanted to go to the VA. The doctor said for his 77 yrs, he was in the best condition she had ever seen, then add what he has gone through with CC and she said, he was a true Miracle. We just keep getting more and more confused.

Hi Theresa, sounds like a plan, I know it can be so frustrating. We have been going through that for several months now. There are 2 tumors and both were shrinking, for no apparent reason, now one is growing and one is still shrinking a tad. We have issues with our Radman as he is changing up stories with us now. What is so disappointing is that he reads like a Whose Who of Radiologists. First one was located near a kidney and the other outside the liver. Now he says both are under the liver???? When I pushed for answers all he did was stare at me. We go to the ONC Friday and will have a little sit down! It would be different if Teddy just had a little pimple on his nose! So we know very well the wait and see game and the counts changing and you are so not alone on this roller coaster ride. We sure like the way your counts are coming down and hopefully you are headed for more good news.