We’re blogging in real time here. Rebecca is sitting in a lovely recliner in the chemo treatment room. The nurse just arrived with a slew of tubes to fill with blood for tests associated with the investigational drug we were supposed to start …. but it turned out yesterday that we can’t get on the trial. We are just here for a short infusion of Avastin. Long story short: the CT scan from last week showed that the tumors are actually a bit smaller than they were in early October. That’s good! But in order to get the investigational drug your tumors have to be getting bigger; you have to be “progressing” as they say in mildly annoying medical lingo. The puzzling thing is that Rebecca’s flank pain has been getting a bit worse, which makes us feel like she should be eligible for the study, but we understand from the scientific perspective why there have to be strict rules for eligibility, and from the economic perspective why the company who makes the drug doesn’t want to pay for extra people to get it.
So the plan now is to get higher doses of Avastin and take Tarceva orally, hoping that will keep the tumors at bay if not shrink them a bit.
OK, we’ve cleared up the snafu with the blood work. Now it turns out that the Avastin was not prepared because they had not realized our oncologist wanted a higher dose. More delays.
Just got the results from the blood drawn this morning — not so good, the tumor markers are up substantially. Does that mean we could actually get on the study? If so, we can’t do the Avastin now. Another two phone calls to the doctor. Answer: No. They need radiographic evidence of progression, and the study just closed anyway. So we’ll do the Avastin. Here comes the nurse practitioner to help us feel OK about our options.
After going over a number of scenarios, we’re back to the Avastin-Tarceva plan. We’ll keep an eye on the numbers and switch to the more aggressive combination of Vectibix (rash) and Irinotecan (nausea) if we have to. We’re hoping to make it at least through the holidays before we do that. More later…
Back home after choir practice — a wonderful diversion. We’re working on a Haydn mass. Rebecca took an oxycodone, as recommended by the nurse practitioner, to help control her flank pain and help her sleep. Yvonne is putting the finishing touches on her college application. Any college that turns her down is totally bonkers. So a tumultuous day is coming to a peaceful close. Good night.
What a long convoluted roller-coaster day! Frustrating too. Sending healing hugs to all the Socolar family. love, Kim
Here’s to a good night of sleep!! You all have earned it. Add a big hug and lots of love from Atlanta
Love and hugs to all of you — and thanks for taking the time to keep us all posted on all these twists and turns. — Debbie
Thanks for the update. Happy Birthday to Yvonne!!!
All our Love from Sugar Land
–Hans & family
My love is with you and hope and pray that the new protocol is of continued benefit. Boy – talk about the good news, and the bad news, and on one hand, and then on the other hand… how frustrating. I hope things have settled down some now. I wish you well and love and hugs. – Melva
How fortunate you are conversent in this language and understanding of the medical system! Imagine how daunting that process would be for someone in your condition who had no idea what the doctors were talking about.
Across the country I read your entries with prayers for your recovery, Rebecca. All my love from Seattle. — Janet
You’re always in my thoughts and prayers, Becky. What a beautiful family you have by your side through all this. And what a spirit you have — not sure many of us would be half as skilled at managing the ups and downs that all of you have. Good thing you never were a wimp. much love, CJ