Honestly, could not breathe or think straight until I started talking on here. Paul, yes--I have met with an allergist and do have a desensitization protocol. My onc is fine with me doing Kadcyla/TDM1 OR that TAS116. The TAS trial doc said she was "nervous" about my sensitivity to herceptin. Okay, well, I'm nervous about everything every day. That's how it is with cancer drugs.
The more I sit with the TAS116 info, plus so much online feedback in support of KADCYCLA, it makes the most sense to me to pass on the TAS116. It just doesn't seem "do-able" with such high side effects reported.
As Laurel put it, better to face "the devil you know". Kadcyla is an FDA approved drug that stands an excellent chance of working, and of allowing me to continue with a good QOL for a couple more years or at least this year. The biggest drawback will be the 6+ hour infusion, along with premeds and whatever reaction they all may give me. (Paul, do you think it is possible, on the other hand, that such a slow infusion rate will mitigate side effects since it's my personal belief that infusing slowly helps us greatly and infusing quickly is how you follow the money? Meaning, Herceptin over 30 minutes allows a chair turn a lot faster than Herceptin over 2 hours, or Kadcyla over 6! Hopefully they are not trying to dissuade me for that reason!!)
I have found an interesting ORAL HER2 trial, using Pyrotinib, info pasted at end of this post. I've reached out to the doctor and will see what I get back. It's more similar to tykerb I believe, so not sure if it alone will help, or if I'll have to add in xeloda, which as we all know, is a buzz kill.
Lastly, stumbled across an amazing blog called theStormRiders.org with highlights from San Antonio. The author is also HER2+ so gives a good amount of focus to info on HER2, which is how I found Pyrotinib.
Here's that link:
https://thestormriders.org/2018/01/1...17-highlights/
I have one more consult, 2nd opinion, on 1/31 and am hoping he'll have a magic lens on and will see something about my case that makes sense, and will guide me in what to do or not do. I'll update if, when...
With tons of gratitude,
Flori
Pyrotinib
Pyrotinib (HTI-1001) is a novel, irreversible dual EGFR/HER2 tyrosine kinase inhibitor with unique mechanism of action and good oral bioavailability. Dysregulation of HER2 by amplification and overexpression contributes to tumor development, progression , invasion and poor clinical prognosis. For example, such dysregulation occurrs in 10-30% of breast cancers,6% of colorectal cancers,15-25% of gastric cancers ,15-39% oesophageal cancer and 5-19% of epithelial ovarian cancer.
Hengrui Therapeutics, INC (HTI) is conducting a comprehensive development program in US for Pyrotinib for the treatment of patients with HER2 positive solid tumors, including, but not limited to, breast, gastric and colorectal cancers.
A two-part phase I, open label, dose escalation study for Pyrotinib are underway in the US in patients whose disease progressed on prior HER2 targeted therapies. There are also five phase I trials and one phase I/II study being conducted in China.
In early clinical development (Phase I in China), Pyrotinib as a single agent has demonstrated meaningful clinical benefit (increase in ORR and DCR) and is well tolerated in patients with HER2-positive metastatic breast cancer and advanced gastric cancer. These early clinical activities warrant further clinical investigation for pyrotinib’s potential to benefit HER2-positive patients, especially those who are resistant to or experience disease progression on prior target therapies.
Hengrui Therapeutics, INC (HTI) holds global development and commercialization rights of Pyrotinib, except for in the Greater China region.
Information on Pyrotinib clinical studies can be found in clinicaltrials.gov (NCT02500199).