Topic: 2 month checkup after IMRT
I know I read a lot on this site but do not post nearly enough. I was diagnosed with ICC in February of 2011. Doctors said I had this dreaded cancer for appr. 3 years before I was diagnosed. After going to Mayo Clinic and not being the happiest with their thought....I turned to MD Anderson...and I have never looked back! After Gem/CIS...and an allergic reaction after 7 months, I had 28 treatments of IMRT (Spring 2012). At my 3 month checkup after the radiation, things did not look much better....so I was placed on Irinotecan. At the next 3 month visit, my tumor (too large to remove) was necrotic and I was considered stable and was advised to just stay on the Irinotecan. I was on Irinotecan until my last dose on September 30, 2013 (all the while remaining stable and CA 19-9 reducing each time). I went for a checkup in October to MD Anderson and I had a small growth at the dome of the liver (attached to the necrotic tumor). We decided to do IMRT again (13 days of treatment-twice daily......so 26 treatments in all) and target that little booger! I just returned from MD Anderson where a PET scan showed that the new tumor now shows no FDG avidity and is RESOLVED!! There are a few scattered nodular opacities in the lungs but Dr. Javle is not too worried as he believes that it might be from the radiation. The opacities are not FDG avid at this time. My CA 19-9 is now at an all time low at 10.2!! I was told to go home, live, no chemo or radiation. Just enjoy life and go back in 3 months and hope for more stability. Tumor removal is not an option (and I have been to 4 different well known doctors who have all said the same thing) but Dr. Javle states I am doing so well, why would I want to do that. Dr. J states that I have a chronic disease and we will treat it as problems arise.
As he was leaving the visit, he said "By the way I had this guy from New Dehli, India call me and somehow knew I was going to be in India next month for a Multi Disciplinary Conference. He pleaded with me to see his mother who has been diagnosed with cholangiocarcinoma." Dr. Javle told the man that he just didn't know if it was possible to see his mother as he had no office, no use of equipment, etc. The man pleaded and Dr. Javle finally agreed to see his mother. Dr. Javle asked the man..."By the way, how did you get my name?" The man stated "Patty's blog!" Dr. Javle didn't quite understand until the man said "Patty, your patient from Illinois" So...now Dr. Javle says I am known internationally in the CC community through my blog. Dr. Javle also said...."I believe people who are members of the CC Foundation are like a very close knit family....and I just said "YOU BET WE ARE!!!! God is good....all the time!!
BTW......my blog is over 94,000 hits at this time......I love knowing so many people are following my journey......from all ends of the earth!