I know I don't keep in touch very well lately, but I've been licking my wounds for the past few months.
As many of you know, I had to leave the inhibitor trial I was on after more than 2-1/2 years because of progression. We decided to try radiation on the newer nodes because of where they were and the fact that they couldn't get a core biopsy, just a small needle biopsy. And core biopsies are needed to get into many trials.
Well, since we had progression while on treatment, my biopsy was sent to Foundation One. And as guessed, it mutated again. This time to FGFR2-TACC2 fusion. So looking at the trial options.
Meanwhile, I went through general radiation. Dr. Meyer wasn't comfortable with SBRT again.
Tomorrow I have a ct scan scheduled to check for progression. Still a little too early to know how well radiation worked.
My problem is that for the first time I have those symptoms everyone else discusses. ITCHING! ITCHING! From head to toes! And my urine is getting dark. My tests are tomorrow, and this pretty much started Wed. So nothing much timing wise would have changed. For the first time in almost 3 years, I'm back to being stressed out about a scan. My bile ducts have never really been affected, and I fear that has changed.
And I don't have my mom to call anymore. During all my tests in Dec. they put her on hospice and she passed Christmas Day. And then Dad had a stroke in Jan which was very scary. He's doing much better, but not 100%. I don't know that he ever will be. They say the vocal chord paralysis might still come back. He can speak, but it is hard to understand over the phone.
Sorry. This started as a please pray for good results. I get them Tues. and I can use all the help I can get.