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@kathrynw1thasea I agree the doctors don't always know. They are knowledgeable but we are all different and I feel like sometimes we are all guinea pigs being tested for what works on us. I have been on Verzenio and Letrozole for about 16 months. I have adjusted to both with ongoing but tolerable side effects. The bladder issue I was talking about a week or so back is a maybe infection of some kind. But the day I went to see my oncologist last week showed a sharp increase in my tumor marker CA15-3. So I had some additional blood tests done and next week I have a MRI of abdomen/pelvis. I even forgot to ask about the Letrozole being the bladder issue culprit. I was thrown by the double increase in tumor marker .

I bet your grandmother was on an early version of Verzenio. That jaw disease osteonecrosis freaks me out too. I have a dentist appointment next week. A second opinion because my previous dentist wants to yank a tooth. I have told them I do not need any unnecessary dental work because of the Zometa. They do not listen; don't care - just want to make money I believe. So freaking frustrating. My oncologist has told me to sideline the dental issue for now because we have enough to deal with - with the bladder and now the high rise in tumor markers.

@scurred2020 I'm sorry to hear about your friend. It's very hard to keep it all straight but we have to be our own, or our friend's own advocates. It sounds crazy to not get additional testing or imaging. Not even a CT scan or body scan or MRI versus PET scan? I hope that she is find answers at this point.

@lucysgirl I'm really happy for you to hear no progression.

Does anyone wonder why any of us had a long NED after initial breast cancer diagnosis and then MBC dx? I have read that is rather low percentage after being NED for more than 5 years. I was 11 years between. I'm just wondering if there is any common denominator.

Hope you are all doing well.

@scurred2020 , so sorry for your friend. It’s so heartbreaking when you watch a fiend whose battle has gotten tougher. I wouldn’t say she failed Verzenio. I’d say Verzenio failed her.

I was on Verzenio 150 with Letrozole (Femra) and the diarrhea was just awful every day. I was so miserable that I took a drug vacation for a week when I had a big three day business trip. I talked to my doctor who told me that studies were showing that people on the lower dose were getting better results and they think it’s partially because of the tendency of people to need the drug vacations. If you take your meds sporadically some of the little buggers get to survive.
I would say that the MO making her wait that long with that much pain was just plain wrong. Insurance may not have paid for the imaging at the same level as it did at 4 months, but some cancer grows fast and 4 month can be an eternity if you are in pain and emotional limbo. If it were me, I’d want to try more carboplatin. It was obviously doing something incredible the first time around. Maybe she needed the 6 cycle treatment rather than only 4.

So proud of you all for keeping at it. I am failing with no excuse. Treadmill and bike in nice cool basement. Nope. Dh even clamped on a surface for books or whatever. I get large print books second hand where I can. I guess I could enjoy some alone time down there.