u/ZombiePrestigious443

Just got my ct scan back - and it seems verzenio actually did something other than make me question every fart. It shrunk my breast tumor, shrunk my affected lymph nodes, but a new 3 mm tumor was found in my right lower lobe, and my bone mets kinda went nutso with spread. Today I'm just kinda achy (I think it's because the weather changed and got colder), still taking verzenio, and waiting to hear from my oncologist. Just kinda venting, and needing those positive thoughts.

So after dealing with poopy verzenio for 5 months, it didn't do jack for me. This is my first line that I didn't respond to at all, and I'm kinda pissed. So new scan next week to check my TMB, then I get to start one of two drugs (everolimus or elacestrant), or if there is a spot, joining a phase III trial. I'm super super frustrated with this situation.

Hello! I'm a stage IV bc patient whose MIL was recently dx with stage IV non small-cell lung cancer. This is more of a rant than anything else, FYI. I went with my mil to her first appt with her oncologist yesterday. Very knowledgable, very open to questions, very into listening to her concerns. He tenatively proposed a treatment plan (he's still wating on biomarkers), and it falls into SOC first line treatment. I asked a few questions just to clarify, and he was able to expand and answered. Mostly I took notes as it wasn't my appointment. I checked in with mil after the appt just to see how she was feeling, did she feel comfortable/heard/seen by this oncologist - she felt that he was the right fit for her. So all good, right? No.

BIL called my husband who has a tendency to take these calls on speaker - and there was so much fear, and wrong information that I kinda wanted to scream. He was worried about her getting a port (which I actually recommended she ask her doc about, and he confirmed that ports were a "cancer patient's friend"), wondering if it was really cancer because the first biopsy (which was only lymph nodes because the surgeon couldn't get to the mass) was clean - forgetting that the bone biopsy showed nscl cells. Freaking out over brain mets when there hasn't been a brain scan yet, and she isn't showing any symptoms (yes I know she could be asymptomatic), even though the oncologist told her that there has been success with gamma knife for that.

Basically, I'm kinda pissed that they are going to undo all the work that the oncologist and I have done to present the situation as a "yes this sucks, but there are things we can do so let's focus on that", and send her into a spiral. /rant over

This is just a dumb post going over my little "experiment" on what I can eat, and what I can't. This is not nutrion advice or even close - I have my weaknesses with food, and I'm learning to live with it. Any regional/national fast food chain - is a hard no. Usually end up miserable within an hour. Gyros from the local mom and pop shop - oooh YES! Teriyaki (with gyozas) from our local joints is a big yes. Cheese in general seems to get me. Burgers made with 93/7 are usually okay, 80/20 is a no go. Hawaiian pizza is good, any other type is no go. Pasta is fine - meatless usually sits better with me. Greek yogurt is usually okay. Scrambled eggs good, fried eggs are bad. Cold fried chicken and jo jos from the grocery deli is okay - as long as I don't eat alot. Panera is usually okay. Still trying to figure things out. I'm open to suggestions.

Seriously - when do these GI issues end?!?! I did 50 mg for two weeks - and it took 12 days for my body to start feeling somewhat normal. I then moved up to the 100 mg, and it started all over again. This time is was even more severe - think 4-7 bms a day. Had a doctor appointment when I still had 3 more days to go before bumping up to 150mg, and my oncologist told me to forget about the 150, and we're going back to 50mg for a month before we attempt to move up to 100mg. So now I'm down to 3-4 bms a day. If it was spread out through out the day, I might be able to deal - but no. I eat my first meal of the day between 9-10 am - and within 30 mins to an hour I'm doomscrolling while seated on the throne. Over the next couple hours, I will visit the throne somewhere between 3-4 times, then it's done for the day.

I know immodium should help - but it also makes me bloated, gassy, uncomfortable, and constipated for at least 3 days. With or without immodium, I know I'm in for an uncomfortable day.

So for my fellow verzenio folks - when did your system achieve some kind of stability? I'd rather not fail this line.

Just got my box of meds from the specialty pharmacy. They included generic immodium. I'm not sure how I feel about this.

I got to see my doc today, she rescheduled my appointment from the 27th to today. Looks like I get to have scans again, and I'm changing treatment lines. No more Talzenna, and onto Faslodex and Verizino. She admits that we don't know if this is really a recurrence, or a new primary. She cancelled the surgical consult and genetic counseling as I was right, and that wasn't my path as I already walked it when I was first diagnosed. I'm grateful that I'm not going to have to do infusion chemo, but I'm bummed that I'm going to be on another medication that's going to thin my hair.

I also questioned which line was I on... was this my 3rd or 4th? Turns out 3rd, as my chemo before surgery is considered neoadjuvant - which makes me feel a bit better. We also discussed possible other lines if this one doesn't work out - turns out I have more options than I thought.

Got the results from my biopsy on the mass in my breast - yep, it's cancer. Which means I've failed my current treatment line. It's just so weird, because talzenna took care of my bone mets and lung mets, and now it's back in my frankenboob. I'm not even upset. Just another okay, what other shit do we have to throw at me?