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@AJ I am so thankful for not having to have surgery right now. I feel very blessed❤️ I hope you have a great evening!

Short update:

Dr G's nurse received my list of questions and juggled a patient who was doing well so I'll be able to see Dr. G. next Friday. He said those are questions only Dr. G can answer (exactly!).

He was like, "Wow, she's really worried."

I said I saw my liver in the hospital and was shocked by the size of the tumors—I thought they were buckshot, but they were more popcorn-sized and everywhere.

He said, "Try not to worry until Dr. G tells you to worry. He's really good about that."

So anyway, I have slight reason to be more hopeful, and I'll have my answers on Friday. I might have jumped the gun again, but this time two health professionals confirmed my predicament, so I'm justified, haha.

That's it for now.

CBL

@cure-ious

It's frustrating, isn't it? I 100% feel given up on and I'm not happy about it.

I have bits and pieces of information, but not enough for the whole picture. And the bits and pieces aren't even coming from Dr. G, but from surrogates. The answers to the most important questions: What's next? Do I have time for what's next if Talzenna doesn't work? What's the prognosis if I don't? (PA said months, I want to hear that from him) When are scans? etc. —need to come from his mouth. He's the guy with the authority to give the orders, I don't want a middleman.

I sent a whole new list of questions to Dr. G's office with a request for an appointment before my next scheduled on Dec 5th. (if I'm even alive by then). It can be a phone call, telehealth, in person, even a MyChart message at this point, but we need to move on this. If I have months to live, then I have months to try something else. My fear is that I won't have even a month and if we don't act now, I won't stand a chance. The problem is he's only in clinic on Fridays and communicates through PAs Mon-Thu. I knew that would be a problem, but I switched for his knowledge about trials and open mind. I gave up the sense of urgency my last oncologist had and it's becoming harder not to wonder if I did the right thing.

My next labs are Monday. I'm not expecting good news because the yellow in my eyes is spreading and darkening. I'm only willing to give Talzenna, or any drug, 30 days to work. If it doesn't work by then, either it won't work or won't work fast enough. I have a lot of options, but what good are they if I'll be dead before I can try them? The first week of December is 32+ days and my appointment is Fri 5, so the perfect week to scan and get the results in time to discuss them in person.

I did include immunotherapy as one of the possible options, as well as local treatments, expanded access trials, and compassionate use drugs. I'm willing to try anything. I haven't had the opportunity to do research on CU drugs yet, but plan to this weekend.

I figured out last night that 83 out of the last 229 days (April 1-ish) I've been off drugs due to side effects or waiting on approvals to start. That's 36%. Not anyone's fault, but we can do better. That has to have some kind of effect on the growth. A bright spot in this whole thing is the colitis seems to be gone. One less thing to worry about.

Anyway, that's it from here. Ugh.

CBL

Hi mods:

We've been in touch via message. Thanks for looking out!

CBL