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:
FOLFOX+Avastin
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….
Erbitux+Irinotecan
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!
Love,
Marie
Sending lots of love.xxxNancyNLG/dNancy Lynn
Thanks for the update, Marie. Praying for your health, too!
Have been thinking of you the last few days. Praying that your new treatment regimen will stabilize and also reduce your tumours. Your one hell of a lady. Love to you and your family xx
Thank you, Annie. Very much.
I empathisize with appearance shyness, I am an aging woman with a keen sense of vanity! However, nothing could mar your grace for me. Your words always spark in me a meditation on joy in the everydayness of life. Beauty sows beauty. Positive pee thoughts coming your way 😉
Wow, Sarah, I am so incredibly touched. Thank you.
Love to you, Marie and family
Thanks Carita!
Yikes! So sorry to hear about the growth. Is it weird for me to feel proud of you for your decision to take part in the trial? Because it feels like, beyond taking this risk for your own health, you’re taking it for the chance to benefit future generations of cancer patients and survivors. Here’s to door #3 – and hoping for the best.
Thanks David! And yes, the scientific side of it is very appealing 🙂
Pulling for you, no matter what you decide. Having some options puts you into–or at least as close as possible to–the driver’s seat: a good place to be, when there’s so much you CAN’T control. Love getting your updates and knowing what’s going on. Hopefully, we’ll see you after Deb gives birth (not so far away now….). Love, x0, charmi
Thanks Charmi!
Can’t wait to see you and, of course, the baby!