Postby StephenWinsToday » Mon Jul 13, 2015 11:04 pm
So, although I still haven't found someone else on this trial...I thought I would drop a line here and update a little.
So far I have had two infusions of the PDL-1 inhibitor Atexolizumab, or MPDL3280a, and avastin. The week after my first infusion I had a weeklong fever that reached 104 at its worst. Chilled, tremendous joint pain, sweats...it was a real good time. I was in the hospital for about 4 days and had every test ran on me possible. No signs of infection anywhere. It was chalked up to an immune response to the medicine. It was suggested that my immune system was probably recognizing the cancer and going to war. Sweet. I'll take that!
The second infusion left me slightly tired and very close to nauseous for two days. Then...nothing. I felt wonderful. The tumor pain I was having on my right side was completely gone. My back pain was gone. I hadn't felt that well in a very long time...thank God I happened to have a trip to Mexico planned during this time. The trip went off without a hiccup! Then I broke out in a rash. It covered my torso in small white spots...thankfully the rash wasn't itchy. After three days, it was gone. Was it anothe immune response? Who knows.
I had my first scan today. I'm responding to the drug. Wow...sometimes you want something so bad...then when you get it, you aren't even sure how to feel. My tumor measured 45x32mm a month and a half ago...now it's 37x25mm. The sattelite nodules are shrinking and disappearing. My onc actually said, "we have gained control of this. Which is nice to see."
NICE TO SEE??? Ha! It's AMAZING. Thank you, Doctor!
I go in to meet with him again this Thursday...then I'm due for another infusion. Side effects, beyond the initial fever and rash, have been minimal. Some diarrhea, some tiredness, sandy eyes....that's about it. I feel physically strong, I'm eating everything in sight, and I finally feel.....well. I have a sense of wellness. Finally.
Feel free to ask anything! I heard this drug just had amazing results with bladder cancer and now the drug is trying to get FDA approval by the end of the year. You can google Atezolizumab for more news. This drug has been found to work mainly on those with msi-high tumors. So lynch syndrome people, like myself, have a better chance at responding...but some sporadic CrCs are msi-go as well...I believe around 10% are. I hope this gave you all some insight on this trial and where immunotherapy is heading. I was terrified to enter this trial...but I'm so glad I did. I hope my experience can act as building blocks for future warriors.
Fight on!
7/15 DX'd at age 28 w/stage 4 crc. Met to mesentery. Also lynch+
7/15 right hemicolectomy
8/15 started 12 rounds FOLFOX.
2/15 Nanoknife. Gallbladder removal. resections. Complications landed me in ICU for 1 week. 8 blood transfusions.
5/15 Nanoknife failed. Enrolled in phase 1 trial of MPDL3280a (Atezolizumab) & Avastin.
7/15 CT shows I am responding to trial drug. All tumors and nodules shrinking.
8/15 CT scan shows stability of all nodules and target tumor
10/15 CT scan shows continued stability.