Tuesday, November 12, 2013

the waiting game

Yesterday we pushed back the IPI infusion to the 27th.  The tumor board discussed the case.   There was only minimal growth in the kidney area, but it has an "invasion component" that makes it necessary to treat.  It used to be sitting just on top of the kidneys, but is now reaching it's little fingers into it.  One concern with tumors there is the possibility of the cancer throwing some tumor emboli out into the body (like blood clots but made of tumors?).  Never heard of that!  Didn't need another way to die of cancer to keep me up at night, did I? 

So they want to see if surgery would indeed be a possibility.  They need to see how well that kidney is functioning in order to make that determination.  If the kidney is not working, they may want to take it out.  If it is working, the surgery would compromise it's function, and we aren't really interested in that.   I really think it's still working (going with my gut here) and that we will end up doing the IPI and not the surgery, but I don't mind having all the facts before we make that decision. 

If the kidney is not functioning, we would do a PET scan and see where the other cancer is (if there is any other cancer, they didn't report the status of my other little tumors) to see if it all could be surgically resected.  If all the cancer could come out with the knife, that would be pretty exciting.  Going from 100+ tumors to NED (no evidence of disease, the gold standard) would be incredible. 

The previous decision to go with IPI before the TIL (Seattle) trial came down to the numbers, really.  We took out the money factor, and the side-effects factor, and it still looked like IPI had the better chance at a response.  The attractive thing about the TIL trial is the possibility for getting a complete response (all my cancer gone).  It will be hard if I never get a chance at that, and just possibly the stars lined up for that treatment, I may never know.  But I would hate even more to not give IPI a chance again, after what my doctor called an "unprecedented response" with my one infusion.

I wish these treatments were studied enough to have a clear outline of what you do first, what you do next, what you save for last.  We don't have that with melanoma as the drugs are so new and the data so scarce. 

Blah, blah, blah.  This blog has turned into boring medical blah.  It's the only thing right now in my small world that is blah and yet that's all I write about.  Huh.  I will work on that.


  1. Alisa you write about whatever you want. It is all so fascinating and your strength and attitude are a blessing in my life. thanks for writing as often as you do. Please know that you are loved and prayed for. love again Suzanne Campbell

  2. Thanks for the update Alisa, I find it interesting too.

  3. Not blah. Helpful to understand it all. And confusing as heck! You are amazing! Maybe that's why you felt inspired to do nursing school, cause you can actually understand most of what you're saying. Thanks for updating. I'm thinking about you all the time!

  4. We do a lot of boring medical blah around here too, actually we sadly UNDERSTAND your medical blah. Keep us posted, & know we Eppersons all love you!!