Best Of

Thank you @mommacj and @cure-ious for the great information and posts. I researched all of these before my appointment this morning and put them on my list of questions to ask. I'll try to make this a short post but there's a lot to say.

It's more or less what I suspected...this Talzenna needs to work and it needs to work fast. 

I didn't see Dr. Gruber today--I saw a PA I'd never met before, but I liked her and trusted her answers. I had a huge list of questions, and what she didn't know, she called Dr. G about and came back to tell me what he said. 

My first question was what am I looking at if the Talzenna doesn't work? She said months. She couldn't or wouldn't tell me how many, but months. I'm guessing 1-3 if my lab numbers don't start coming down, but that's only a guess. 

They've held the Talzenna for 16 days now, thinking it's the cause of the colitis. But I checked my calendar, and I had loose stool for 16 days (I thought it was from eating raisin bran, lol) and 5 of those days were before I even started the Talzenna. The bad diarrhea didn't start until day 12 of Talzenna, so bottom line is I don't necessarily buy that it's chemo-related. 

They wanted to hold the chemo until a few more tests came back and to make sure the colitis and pneumonitis had resolved, then possibly reduce the dose. I said, That doesn't work for me. It'll be another 4 days before I can start a new dosage, and I don't want to wait that long. The colitis won't kill me, the pneumonitis won't kill me, but the liver will and I'm not willing to wait. I'll be honest, I have full dose pills at home and I will be taking those starting tonight, at least for the next four days. I don't mean to be an a**hole about it, but I can't afford to wait.

I also told her (long story short) I'd tried Fibercon to stop diarrhea the last time I had colitis, and it worked. Unfortunately this time it backfired and made it worse. I did more research and Metamucil (psyllium husk) is actually recommended as a diarrhea treatment, so I started that yesterday. I only took one dose, but already took a dose today and it has improved already. I also have a bunch of new drugs from my pulmonologist, but haven't had the opportunity to use them yet, which I will be starting today. They want to see me Monday to repeat labs and check to see if I'm feeling better, and I will do my damndest to make sure I am.

I asked her to review my list of possible trial options. A few might work, but because of the life span exclusions. I'm not sure I qualify for trials anymore, so that sucks. Tomorrow I'll be researching compassionate use drugs so I have another option. She did say that hormone blockers have run their course for me and in the metastatic setting, they usually don't do drug combinations. At this point, I feel like I don't have time to try much else—it's Talzenna or hospice pretty much. Possibly a CU drug if I'm lucky.

I'm still processing the news. I'm not big fan of toxic positivity which I believe can do more harm than good, but there's always hope that Talzenna will work like gangbusters and kick the cancer's butt for a while. It happened a few years ago with erubilin, and could happen again. There's also a chance I could win the lottery or appear on the swimsuit edition of Sports Illustrated too, so there's that...

Anyhoo, that's the story from here.

Thank you to everyone for your input, incredible research, and support. I've learned a ton, and I feel like I've been the best advocate for myself that I could be thanks to all of you.

CBL

Big day for me tomorrow. Oncology visit, Zometa infusion, palliative care appointment. Then Thursday, Faslodex injections. Don’t know when my next scan will be. My back has been hurting but I don’t know if it’s mets or my exercise classes! I’ll be sure to discuss with the doctor. Oh and brain MRI next week.