Starting Talzenna

[1stgradeteach1]

I'm starting Talzenna next week and want to know any experiences people have had with it. I'm super scared of the side effects ruining my ability to have a good summer. I've been on Ibrance and Letrozole for about 2 years and tolerated it very well. I've been able to live my life pretty normally. I had been getting scans every 3 or 4 months and the same with bloodwork. Everything was stable, so Oncologist said let's spread it to 6 months. First time I did that progression was found in hylar lymph node which is apparently by wind pipe and heart, just not a good spot. I'm transitioning to a new oncologist in the office, mine has moved on and up. New onc wanted to switch Ibrance right away to Talzenna. I have BRCA 2 mutation. A Pet scan was mentioned, so I decided to get that to just double check new findings. Pet scan showed the progression at hylar lymph node, neck lymph node, and iliac bone that was missed in my regular nuclear med and CT scans. I'm taking 3 weeks off to clear my system and will be ready to start Talzenna June 1. I started this journey on Verzenio and stayed on it for about 4 or 5 months before quitting due to GI toxicity. I tapered down does of Verzinio to see if I could tolerate it and just couldn't deal with cramping, diarrhea, and lack of appetite. I'm worried Talzenna might do the same. I read Talzenna has more fatigue and nausea side effects. Are they debilitating? Will I be able to go to summer concerts? Ugh! Any information would be greatly appreciated. I've read up on Talzenna, but I want real life testimonials.

[Gardengirl345]

I don’t know about Talzenna, but I just read your bio and was struck with our similarities. I, too, was barely stage 1 in 2011. Had a double mastectomy and tamoxifen for 10 yrs. Then progression caught randomly in 2021. No one believed it came back. I was the one who pushed for more testing and they finally biopsied and determined it was MBC. Mine is in my bones and in some lymph nodes. I’m 16 months on letrozole/ibrance. Mostly stable though one small spot on ilium showed uptake of estrogen this last scan. They scan me with the new FES PET now because I am lobular and ER+.

Wishing you the best with the Talzenna. I know each new Med causes such anxiety, but a friend with MBC reminded me recently that sometimes the new meds can be tolerated better and give better results. 🩵

[Lellybug]

I was on Talzenna as part of a clinical trial as my first line of treatment. Exhaustion was my only side effect. There’s. a great FB group of people on Talzenna with lots of info. I think you’ll find it way better than what I’ve heard about verzenio. The FB group is called “people taking talazaprib aka Talzenna. Good luck!

[1stgradeteach1 in reply to Lellybug]

Thank you! How long did Talzenna work for you?

[Here_now]

Hi,I was on Talzenna as my third line of treatment. It has been my favourite so far. I was very tired for the first month or so, but after that I had practically no side effects. It worked for 7 months for me, after which I only had minimal progression, but my onc pressed me to change to another line all the same.

Previously I was on Ibrance and then Afinitor, but Talzenna was by far my fave,I had a normal life on it. Just goes to show that each treatment is different for different people!

I hope it goes well for you!

[1stgradeteach1 in reply to Here_now]

Thank you!