Thursday, October 27, 2016

And then a trip and fall backward

I went in for my second planned infusion of Opdivo today, nervous because of the symptoms I'd been experiencing already from just one dose. The symptoms alone I could handle, that they might mean my liver was showing signs of trouble again I could not. Sure enough, I learned at the visit that my liver-related labs showed problems again, significant enough to be denied any more of the treatment and to be put on a high dose steroid regimen... again. Last time I had a steroid regimen and my immune system was essentially shut down, the tumor grew quite a lot. I fear that this may happen again. But what scares me the most is that I will never be able to have this type of immunotherapy again. 

It's as if after my diagnosis I was falling, and by chance landed on some golden magic carpet and thought I was going to stay there, safely, only to have it pulled out from under me and now I'm falling again. Immunotherapy was actually working. Something that's incredibly rare in the world of mucosal melanoma. I had a good shot. But it would have killed me before the cancer could. Now, I have to rely on the hope that my immune system will retain some kind ofmemory  for the notes of a song it's only just learned. And that the steroids help to repair my liver but don't work so well that they erase the memories, too. 

I meet with a radiation oncologist on Monday to see if I'm eligible for radiation, which has shown promise with mucosal melanoma when in combination with immunotherapy (so I'm not sure where that puts me). I will go back to MD Anderson for their opinion as well. And now we will look for research trials. The T cell study that was my "back up" involves immunotherapy, unfortunately. I am also told that I will be ineligible for trials for new lower toxicity immunotherapies because of my adverse liver reaction. 

I will keep you posted as I learn more.

UPDATE: Dr Patel (MD Anderson) called me today and said she has a different plan that involves not taking steroids yet but keeping a close watch and letting me have more Opdivo and hope things don't get too high. She also said I'm not excluded from trying other immune therapies. She's pretty much taking over, and has some other ideas for a things I can do. I needed to hear this! She's willing to work with this to maximize my time getting this helpful treatment 😆. 

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