Chemo Changes

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Cigna has now denied the second request and appeal from my neurosurgeon for a brain MRI to assess for new growth given my daily nausea. That means we won’t be getting a look inside my noggin until early July, the three month post-surgical mark, when they say they will cover it. I could open a patient appeal with Cigna, and/or go to the state board that regulates health insurers and file a complaint, but by the time I spend the mental and physical energy on that and it winds its way through institutional bureaucracy, it will most definitely be well past July and a moot point. I’m saving my sanity and strength, and accepting their decision for now. Life is literally too short.

But we aren’t ignoring the problem. My oncologist Dr. K has suggested a change in chemo to attack any cancer growth in the brain in a non-surgical manner. As I’ve mentioned in the past, most chemotherapies and immunotherapies aren’t helpful in treating cancer spread to the brain because they do not cross the blood brain barrier, the protective three-part layer that surrounds the brain. But some clinical studies have found that the drug combination of Xeloda and Tykerb, two oral chemotherapies, is able to cross that barrier and shrink brain metastases in some women with my type of cancer (HER2+). So I will be making the change as soon as the new drugs arrive from the specialty pharmacy.

I’m a little nervous about saying goodbye to Herceptin and Perjeta, since they’ve worked so well from the neck down for 18 months. But over the past 14 months we’ve treated 25 brain metastases with gamma knife and one of those again with laser ablation, so it feels like this change in strategy is smart. If Xeloda and Tykerb can work some magic up there, at least for a little while, we’ll be in good shape.

ronaldMCDandmeThere are a few cons to the treatment switch. First of all, it isn’t as gentle on the system as my current immunotherapy. I may experience some hair thinning or loss again (just when I was creeping past the Ronald McDonald phase of hair regrowth…sigh). And there’s the usual long laundry list of possible side effects that most chemos have – gastrointestinal chaos, hand/foot syndrome, white cell depletion, etc. But there are medications to combat those side effects and it’s worth it if it works to stop cancer in my brain. It will also be nice to be able to take treatment in pill form instead of getting infusions every three weeks.

Whole brain radiation remains another option for me if my July MRI shows new metastases. But for reasons I’ve talked about previously, I’d like to save that as a last resort.

I’ll keep everyone posted on how the new routine goes. We are getting really excited to go on our trip to Chicago next month – the first in several summer bucket list adventures – so I’m hoping it’s a smooth road!

Much Ado About Pretty Much Nothing

 

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Shirt cred to my sister, Marlo.

It’s a beautiful 78 degree day here in Old Saybrook, which is doing more to improve my mood than just about anything could. Plus I’ve made it through the first half of May without a trip to the hospital (woot!). I’m realizing that it’s been over three weeks since my last update; I’ll try to do better to keep everyone in the loop so you don’t have to email/message/call/send smoke signals to ask what’s up.

More Head Games

After some back and forth with insurance, my neurosurgeon’s office is resubmitting the request for my previously-denied brain MRI. It’s scheduled for May 22nd, assuming it is approved by Cigna. Cigna did respond to my Twitter rant about the first refusal and offered a peer-to-peer physician review of my case with Dr. Chiang, so given that and the fact that I’ve had non-stop nausea for the past couple of weeks (a sign there may still be something going on up there in my noggin), we are fairly confident it will be approved this time.

Yesterday I saw a new neurologist at Yale who specializes in seizures and epilepsy. His role on my treatment team is to manage the medications that control my seizures. He’s keeping me on the same dosage of Keppra, the medication that I’ve been on since my first seizure back in February. He’s also prescribed a nasal spray that is supposed to help stop a seizure in progress if I take it in the early stages. I haven’t had a seizure since mid-March at this point, so the Keppra seems to be doing its job. I won’t be able to drive my car again until three months have passed since my last seizure, which puts us at mid-June. I’m counting the days (and hoping that the seizures are permanently behind us!).

And Life Goes On

For those who asked, Jasper did make it to prom and had a blast. While we didn’t have enough time to get a tux lined up, his stepdad took him out the night before the big event and bought him a suit (and even talked the manager into some on the spot alterations).

Mother’s DIMG_5818ay was lovely and I got the chance to see all the kids. I received many lovely cards and presents, including an incredible painting of Ollie, our blind Siamese cat, by resident artist Jasper (see photo). Also not pictured, but very much appreciated, was a two-person kayak with all the accessories (thanks Tim!). After some lessons from the kids, I can explore our Old Saybrook waterways via kayak, and knock that off my bucket list.

Next month is another bucket list adventure – our trip to Chicago to see Hamilton and to visit old stomping grounds. We will also be traveling up to the Milwaukee area for a stop at the Harley Davidson plant and museum, and a side trip to my alma mater, Marquette University. Tim has never really been to the Midwest aside from making connections at O’Hare, so it will be fun to give him the grand tour.

We’ll also be going to the Grand Canyon and Sturgis this summer, thanks to the generosity of friends, family, and kind strangers who donated to my bucket list fund in memory of my late father, Paul Ford. Tim and I have been overwhelmed by the support and kindness of so many. We will be sure to share details of our adventures here.

I also promise to post again with the results of my next brain MRI, or with a rant about my health insurance if by some chance it is denied a second time. Fingers crossed it continues to show good post-treatment progress and no new metastases.