This was a super tiring day but we ended up, I think, in a good place.
Not surprisingly, the CT scan showed growth. I knew it would, though it is still hard to hear it. The good news is that it doesn’t look like runaway growth. But it is growth, which means that we need to switch chemos.
My doctor was great about discussing options, and feels there are three:
This is similar to what I have been doing, in that I would get an infusion at Dana Farber every other week, and leave with a “to-go” bag hooked to my chest for the next two days. The primary difference is that I would be doing a drug called Oxaliplatin, which gives neuropathy. I’ve done this drug before, and it isn’t fun for sure. But it helped a lot last time….
Irinotecan was part of my most recent regimen, though the toxicity built up and made me really sick in March and April. So I’m on a reduced dose. Still, they would pair these two. Erbitux, more often than not, gives a skin rash. The good news is, no to go bag. I would go in every two weeks for an infusion, and when I’m done, I’m done for two weeks.
Clinical trial: Erbitux+Irinotecan with the possibility of Avastin added (blind study)
Avastin has helped me this far, so I was intrigued, though a bit concerned about the constraints of a clinical trial. I’m used to setting my own schedule, like taking a week off when the boys start school, or when we have a planned vacation. But they assured me that this one wasn’t that strict and I could have that flexibility. The primary constraint was getting more frequent CT scans than I prefer (every 8 weeks rather than every 12-16).
Tiron and my friend Julie were there with me, and we discussed the options with my doctor and then with the clinical trial nurse (I guess she is a nurse? Can’t remember). They were really generous with their time – I think that between delays, conversations, blood draws and my periodic vomiting, we were in that room for two hours. (15 minutes is the norm.)
I decided on the clinical trial. No real reason, I guess, except that the break from that bag felt really appealing, and I thought, why not try to throw Avastin at it if possible. (No guarantee that I would get the Avastin, but there was a chance.) I had prayed for guidance and felt calmest with this choice, so that helped.
I would start next Tuesday, assuming that I qualified for the study. To determine this, my nurse drew more bloods and a urine sample, then she disconnected the tubing from my chest and I left exhausted.
Later at home, the study nurse called – my proteins in the urine sample were a little higher than the study permits. We are going to re-test on Thursday, just in case it is a passing thing. So, no definite answer yet.
I feel okay about this little bump. I had a long run on FOLFIRI plus Avastin – over seven years with breaks. So I guess it is time for a new line of defense. And even if I don’t qualify for the clinical trial, I can do something very close on my own with my doctor.
As for the skin rash – I’m going to out as much as possible this week because I’m sure that, if I get that rash, I will be feeling shy and self-conscious for awhile!
Thank you for your prayers and support. Sending you my gratitude and praying for your good health!