Next Steps – April 2016
I missed posting something on Sibling Day so here’s an old photo of the girls to share with you all. So many people who are following Ana’s story have only know her a short time and I thought you’d get a kick out of seeing her dance around with Emily (who was an adorable chubby 1-year-old oh so long ago.) Emily turns 12 tomorrow.
But the real purpose for this post is to update you. We spoke with Dr. Yamashiro this morning and he’s decided to start Ana on Jakafi and Celebrex again. Jakafi is a drug that had worked well for nearly a year (I think Ana was on it for most of 7th grade), but then her cancer started progressing again so he stopped it. The drug had almost no side effects and was the most hopeful of all the targeted drugs. He thinks it may work well with the Everolimus (the chemo/anti-rejection drug she’s on). This drug combo is pretty much a total experiment, though there is a clinical trial with these two drugs going on somewhere in the U.S., there’s no data available to see if anyone’s actually responded to this combination. But, Dr. Y feels that she has as much of an opportunity to respond to this combination of drugs as she would on I.V. chemotherapy (the hard stuff), and maybe even more of an opportunity. Plus, the I.V. chemo is something she is very much opposed to and it can make her very sick, so…Jakafi it is.
We have a two month supply of this drug which is another crazy expensive chemo drug (and thus, difficult to get approval for) which she can hopefully start taking tonight. We just need to make sure Dr. Y is okay with the fact that it expired 2/2016. He’s also starting her on Celebrex again.
Dr. Y is also going to touch base with the Interventional Radiology Department to see if there’s a possibility to remove some of her tumors noninvasively via an I.R. procedure (they can freeze the tumors, nuke them, suck them out through a straw…not sure exactly). Ana doesn’t want to go through open surgery again and I don’t blame her since it’s a lot of pain for very little benefit. She may be willing to do a “lesser” surgery if that’s an option, if they can remove tumors via a small incision. We’ll see. All of this is to keep her comfortable and functioning as long as possible.
Dr. Yamashiro can’t or won’t answer the question, “How long has she got.” He said that he thinks that based on the rate of abdominal/pelvic tumor growth, she will start experiencing pain in 2-4 months and won’t be able to do as much as she’d like. So, we have a window right now where she’s feeling well, though very sad, and we’re going to give her what she needs – as much as possible – allowing her to spend her time as she wants to. She’s staying in school for now.
Much, much love to you all. Without your support, we’d be lost.