A major lesson I have been digesting over the past few weeks that nothing is black and white, not even life and death. After being diagnosed in January and pouring over all the research on mucosal melanoma and its treatment that I could get my hands on, I developed what I considered to be a pretty clear picture of which events meant that I would be kept safe within the fragile confines of ‘being alive’ and which events signaled my imminent expulsion into the unknown world outside of that. Since that time, I have gotten something qualifying for my ‘expulsion is imminent’ news more than once. Shock and depression would follow and I would begin to turn away from hope. However, each time, instead of opening that door to find the dark, unseeable expanse that I imagined, I have found myself somehow wandering into another room that I didn’t know existed, eyes wide to absorb the foreign walls and heart full of cautious gratitude. What do I know? Apparently not all that I thought I did.
Over the past couple of weeks, several new doors and windows have been revealed to me, including an old door that I thought had been padlocked and dead bolted behind me, the entry into which would not grant access to my prior comforts but instead lead to somewhere frightening.
A new CT scan and MRI showed that my tumor has grown again. Imminent demise initially suspected, I went through the perfunctory cycle of shock and depression. However, it was followed, much more quickly this time by audacious hope, because I’m learning that there’s usually a reason for it! Here are some of them:
1- Miraculously, my liver enzymes have returned to normal. I was able to get nivolumab ‘on time’ last week and it didn’t stir the ‘liver damage’ needle one bit. This was very unexpected and very welcome. It means nivolumab can likely stay on the table indefinitely and that I only need to get the labs drawn every other week, prior to treatment.
2 - The growth of the tumor was nothing compared with prior rates of growth. According to MDACC radiologists, it grew approximately .7cm in 7 weeks time. He used the word “slightly” in the report, which I appreciate but don’t fully agree with. However, in the past it has been known to grow 3cm in 4 weeks. So perhaps the nivolomuab is working after all.
3 - After much deliberating, the gynecological surgeon and melanoma surgeon at MDACC have gotten a vascular surgeon on board to agree to a surgery to remove the tumor, in its entirety, as long as a scope reveals that it is feasible. The purpose is primarily to harvest the tumor for TIL, which will hopefully replicate in the lab and can be on hand as a back up treatment method if needed in the future. This is scheduled for January 11.
4 - There is still no spread! The nivoloumab is thought to be particularly helpful at preventing spread, so if my liver is tolerating it well I may be able to continue to get this treatment for a long time. The other tumors that were shriveled by the combination immunotherapy have not returned. Nothing new is apparent. Let’s keep this up.
5 - DR. MARKOVIC. At the urging of a few friends in my cancer support network I have successfully sought, and obtained, a second opinion from a creative and personable doctor at the Mayo Clinic in Rochester, MN. Friendly and impressive hospital aside, the visit was very positive. He told me (and here’s where the old door may reopen) that he would be comfortable giving me a small dose of ipilimumab with my nivo, essentially a dialed-back combination therapy, since I had such a great response the first time. He said they've had success with managing immune-mediated hepatitis with a different type of steroid that allows more immune activity and that if steroid taper of prednisone WERE required again it could be done much more quickly. He’s literally the author of a paper on this. He also recommended intra-operative radiation if I move forward with the surgery at MDACC and told me he would be happy to work with a local oncologist in Nashville as much as possible (that he feels a big role of his is to help local oncologists figure out what to do). He also has a few things brewing and coming down the pike that he thinks are just as good an option as TIL, should I need it in the future.
I’ve got ‘disease progression’ and yet I’m smiling because of the many windows and doors that have been revealed to me. These junctures have become less frightening and I’m realizing that I don’t have any idea what lies ahead, and that that’s ok.
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