Thursday, January 26, 2012

Bad News Piled Up Yesterday

The initial bad news yesterday was a shocker. We'd been expecting good news. I feel great, and we'd never gotten bad news so soon after starting a chemo.  So we weren't prepared.  I had thought about trying to convince Lou to stay home. I hated the idea that he was wasting his time, coming to this routine appointment with me.

Once I realized it was bad news, we started talking pretty seriously about what my options were. That was complicated, trying to decide what to do next. Didn't leave a lot of room in my head to feel sorry for myself.

More bad news came later, though. After we got home, we talked to a nurse on the phone, who was reading things off the CT Scan report that we had not talked about with Dr R. Like, the tumor in the pancreas is now much larger and outside the pancreas and "infiltrating the liver." That can't be good.  And there is a new mass, down near my bladder that is about an inch.

I was upset last night and had to set it all aside after surfing the web for awhile. But I did get to talk to Dr R today. He thinks that the tumor is not infiltrating the liver. To him, it seems to be pushing up against the liver. In general, sarcomas don't infiltrate organs. And if a tumor does infiltrate, it typically does so with finger-like growths. And my tumor shows no finger-like growths.

Plus, he said it wouldn't be so awful if it were infiltrating, because the liver is pretty big. But that sounds like not worrying too much if there are mice in your kitchen, since your house is pretty big.

Here are the three options:

  1. Clinical trial of Dacarbazine vs Eribulin
  2. Clinical trial of Dacarbazine vs Yondelis in South Carolina
  3. Phase I clinical trial of two other drugs together 
There is some strategy in choosing the next treatment. If I choose option 1, then I can never do option 2. I can get Dacarbazine at any time (it's an older chemo drug well established for LMS) but then I can never do options 1 or 2.

We were leaning toward option 3, but there are some yucky requirements for the clinical trial, like multiple skin biopsies and tumor biopsies. Option 3 does not sound fun. But Dr R thinks that it is an exciting combination of drugs. I cannot remember the names of the two drugs. I have a whole big handout on option 3 but I don't feel like going to get it.

So right now I don't know what to do. this is the most difficult time, trying to decide.  Once I decide, then it is much easier. I have a goal, something to focus on.

The thing is, there is no guidance on which one will be more effective for me, and which one will be easier for me to endure. So it is a crap shoot.


Joanna said...

Hi Karen,

This is the ultimate crap shoot. You always amaze me at how resilient you are. I hope those two drugs are just the ticket.

Thinking of you and hoping for good results.

Anonymous said...

Thinking of You Often!!! Love xoxo Sharon W.

Anonymous said...

Know I am praying for you, Love and Peace for you in your decision.