Dr. Clark called last night a bit after 9 and did not have good news. The CA-125 from Monday was "about 190." She had just gotten off the phone with Dr. Huh (pediatric oncologist at MD Anderson), who wants to stop the irinotecan/temodar chemo Zaida just started, and wants to start vinorelbine. Dr. Huh wanted to talk to Dr. Hayes-Jordan first. Dr. Clark really wants to push to keep the surgery as scheduled on April 2nd. She knows that Zaida does the best when the bulk of cancer is removed from her body and she gets something to keep it at bay. Just doing chemo to shrink established tumors does not work for Zaida.
Dr. Clark wants to get the tumors out to be tested. I said that Dr. Huh knows that testing how a drug works in a lab with tumor cells is very different than how the drug acts in a human body. Dr. Clark says this is absolutely true, but they can test a thousand drugs in a test tube for Zaida, but they cannot test a thousand drugs on Zaida. (I said, "A thousand??" She said no, she just made that number up. She just means a lot of drugs.) It's true that something that works against a certain cancer cell in the lab, might not work in Zaida's body. She also thinks that we should not wait for surgery because she's afraid the tumors will grow too much to be removed effectively.
Dr. Clark wants to do one dose of vinorelbine on Friday and keep the surgery date. She will be taking to Dr. Huh and pushing this.
So, this morning I emailed the physician's assistant (that I spoke with yesterday), reiterated what Dr. Clark wants, and also asked "Does Dr. Hayes-Jordan still have April 16th open for surgery? If so, what if Zaida had 3 weekly (Friday) doses of vinorelbine, then surgery on the 16th? Maybe do the surgery whether the vinorelbine works or not? Our biggest worry right now is that if we wait too long before surgery, the tumors will get so big and/or spread so much that they cannot be removed by Dr. Hayes-Jordan!" (I was trying for a compromise as I am feeling conflicted about also wanting to know what chemo drug will work for Zaida.) I sent this email at 6:46 AM. At 6:49 AM, she writes back, "I totally agree with you guys. I sincerely apologize for the confusion. Dr. Huh is out this week so this has also complicated some things. Dr. Clark said that Dr. Huh is going to speak with Dr. Hayes-Jordan to see if we can keep the surgery. If that is the case, I would just keep her original plan with surgery 4/2. I will keep you posted, but Dr. Clark may hear something before I do."
Our feeling is that we will probably keep everything as it is scheduled right now: MRIs on the 31st, surgery admission and prep on April 1st, and surgery on April 2nd. We are still waiting to hear, and nothing is definite, but we don't think we should delay.
This morning Dr. Clark called (but had not spoken to Dr. Huh yet) saying that Zaida will need either a port (she hasn't had one for a long while) or a PICC line put in tomorrow before getting vinorelbine. I can only assume it's because, according to http://chemocare.com/chemotherapy/drug-info/Vinorelbine.aspx#.VQrz0NVVhBc
, "Vinorelbine is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives this drug must be carefully trained. If you notice pain, redness or swelling at the IV site while you are receiving vinorelbine tartrate, alert your health care professional immediately." Sounds fun! We've decided to get the port if the surgery team has time in the morning. If not, then she'll get the PICC line and get a port at a later time. I have to say, Zaida will not be happy about this! She much prefers an ordinary IV in the arm.
We're not sure what to expect with the vinorelbine. It is supposed to be well-tolerated, but Dr. Huh said that it only works in 1 out of 4 patients. I told Dr. Clark this last night, and she said there are no other Zaidas out there!
This brings me to the last of the bad news from yesterday, that I could have mentioned in yesterday's post, but didn't think about it. I was in Denver to pick up Zaida's temodar from a compounding pharmacy an hour away. Our insurance changed on March 1st, and they don't cover it. I paid $1,082 for it, and now we are not even going to use it (except one dose yesterday afternoon, before we were told to stop it). I then spent almost 2 hours on the phone with the insurance company to see how to get it covered. The conclusion was, there is no way to have it covered if it is compounded into a liquid, but it is covered if Zaida can swallow pills (which she is terrified of, as least she was a couple years ago, and she is the most stubborn child to ever walk the earth!) and it is covered if we get it in the infusion center intravenously. It is not reimbursable and even if I submit a claim, it will NOT count towards our maximum out-of-pocket dollar figure. All this may be completely moot now, anyway. I'm trying to get upset about the wasted money, as part of me is probably super pissed about it, but my fears about Zaida's cancer are winning out over any other emotions. This is saying a LOT because I'm a pretty frugal person, who went back to the register to have a price correction of $0.21 for twizzlers that didn't ring up correctly at Walgreens.
Yes, we are jumping feet first into a shitstorm.
Thanks to everyone for all the love and support! We cannot thank everyone enough!