Sunday, December 09, 2018

Pause

I am now 9 weeks post brain surgery on my cerebellum.
And 1.5 weeks post targeted radiation to my cerebellum.
And 4 weeks post-entry into my second clinical trial, the EAP for Lorlatinib, which we hope will control (dare we say shrink?) the metastases in my brain.

Right now, we are in a very pleasant phase I am calling ...

The Pause.

I don’t have another doctor’s appointment until my MRI on December 17, so until that time I am going to assume that all of these treatments have done what they were supposed to do, that my new clinical trial med Lorlatinib is holding my cancer at bay, and all I have to deal with are some pesky side effects.

I’ll take it.

In the mean time, I am enjoying trying to get back to some basic level of fitness (brain surgery followed by radiation really knocked me down, and I find myself huffing and puffing just from walking fast). And enjoying movie nights with my kiddos, planning for the holidays, soaking up laughs at Pointless, complaining about my new diet*, and appreciating feeling relatively well. I’m sure hoping for a lot of boring news from the scan and lots of boring months to follow. These past two months have been the hardest two of the whole 5.5 years (and counting!) that I’ve been in treatment for metastatic lung cancer. Boring sounds really good to me!



*one of the side effects of the new drug is that it makes your cholesterol and triglycerides go astronomically high. I am currently on a low-carb diet to see if I can get them to come down. I never knew I loved carbs so much. Or not having to think about what I can and cannot eat.

2 comments:

  1. Anonymous6:27 PM

    Hi Tori. My brother just started taking crizotinib for the same ROS1 disease. How did you manage the side effects? Have you tried CBD or frankestine oil or pomegranate? How about hyperthermia or vitamin C? How can I donate money to find a cure for this ROS1 cancer? I hope and pray for your complete recovery.

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  2. Join the ROS1 Facebook group! There is so much info there for ROS1 patients. And here is a link to our ROS1 study fundraiser: https://www.supportalcf.org/ros1/ToriTomalia

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