1st Check up PET scan
- This topic has 9 replies, 4 voices, and was last updated 8 years, 5 months ago by
.
-
Posts
-
Scott my oncologist at the Princess Margaret in Toronto, Dr. J. Knox specializes in gastrointestinal, you can ask your oncologist to contact her also for help. Has your team looked into immunotherapy, it is becoming very popular. Just some suggestions. There is also a group on FB I talk with, Cholangiocarcinoma Warriors, it is a closed group so you have to ask to join. Please consider reaching out to it, they are a great group and very supportive also. I see some of the same members here also.
Actually there is a very nice guy by the name of Matt Reidy, he is also a member here and he is on a trial called Keytruda and getting good results, you might want to find his messages and tap into him he is immensely knowledgeable.Scott, I have tinnitus with a hissing in my ears all the time so not the exact same but I do understand. Here is a cute story: I had an Aunt whom I loved dearly. She was a very religious Jew. As she got older she also got tinnitus but hers was like a radio playing “Christmas Music”. Can you imagine? That is the only music that continuously played in her head…… I think one was Joy to the World!
I guess I have CRAFT too. Between chemo and bipolar disorder and all the involved drugs, my brain and senses are not very sharp. I tried looking through a few pages, and all the medical terms and long words….I just hear the jeopardy song in my head. Sonetimes I hear Charlie Brown’s teacher talking.
I did look around, but I just get confused honestly. My ability to concentrate has been definitely affected.
For those of you who, like me, are too tough for gem/cis to work, what are the other chemo options?
Glad to see you back around Lainy!! and yes, Attitude is the key.Hi Scott! Your attitude is going to get you EVERYWHERE! Sometimes a little game playing is necessary to find the cocktail that knocks the heck out of that intruder! Everything seems to work diff. for everyone. I do like that your ONC consults and I know she will come up with a new regime to try. Hang in and hang on as the good news is there are other options to take on and like you say, no new light ups!
We got the results of our first round of gem/cis. The big tumor showed signs that it May have gotten slightly smaller, but it is still aggressively uptaking the contrast. There were a few other spots in the liver that are showing up beighter than they did on the initial scan in October. There are also a few lymph nodes showing increased activity. My DR feels that gem/cis didnt react as she liked and wands to try a different combo of drugs. She is conferring with the specialist to best decide what the next step is gonna be. The good news is that nothing new lit up.
- The forum ‘General Discussion’ is closed to new topics and replies.