For all those fighting ILC and taking Verzenio w/AI how are your results? After looking at their website for those with MBC it looks like it could slow progress by almost double (14.8 months with AI to 28.2 taking Verzenio + an AI). Since lobular is sneaky and hard to detect I was curious how many of these patients included in these statistics had lobular. I can not find anything regarding subtypes. All are lumped together as ER+/PR+ HER2-. I know everyone is different and some medications work better on others but rarely the testimonials I read include the subtype (Ductal or Lobular). They seem to only mention hormone and HER2 status
Lobular ER+/PR+ HER2- Verzenio W/AI - SHARE Metastatic ...
Lobular ER+/PR+ HER2- Verzenio W/AI
You are right that very important factor should be noted as the presentation between the different types in mets is very different and Lobular can take much longer to accurately idenitify!
Hi there, I only lasted 13 months on Ibrance/Letrozole before progression and was moved to Verzenio/Faslodex and the progression just kept marching forward with no reprieve on the Verzenio/Faslodex protocol. Everyone reacts so differently with these medications it's hard to tell how long they will last or if they will even work. There certainly is not enough research into lobular and other sub types and unfortunately lobular has been lumped into the ductal protocols and lobular does behave completely different than ductal, even with medication reaction. LBCA (Lobular Breast Cancer Alliance) is a wonderful site to gather really important and good information on lobular, if you have not already checked it out. I think they are the only ones really doing any significant research into the sub type.
I am lobular and it was hard to see that the cancer had spread on the CDK 4-6- First I was on Ibrance and then verzanio and got about 2.5 years out of that now on cape for 6 months….because of spread to liver. It works well for now but my feet snd hands hurt all the time. But I am not fatigued like I was on the CDK4-6.