Long term Herceptin

@Blossom1961. Oops I think you have to use the @ symbol. Anyway, thanks for that comment about the lady who has been on Herceptin for 17 years.

Blossom1961, I’m not sure how to reply to a comment so hope you see this! That’s amazing, 17 years. There’s nothing better than hearing stories like this.

@LizetteH I was seated next to a lady in the day ward who had been on herceptin for 17years and was still going well.

It’s so good to hear about people being on Herceptin long term. I was on it for a year in 2020-21 and went back on it late last year, after chemo,  as the cancer had returned. I haven’t been game to ask how long I can take it for and had thought for some reason it was only one year.

How these are good stories. I don't have the same sub type for my mets but it still gives me so much hope. 

It is great to see how many are doing ok on herceptin and perjeta .I’m soon to have no 40 , and am sitting on no evidence of active disease -first diagnosed I. June 2020 . Had initial,treatment as if a EBC case (chemo/lumpectomy/ radiation ) and herceptin post treatment, the L3 spot found and they realised it had been there since day 1 (a radiologist revised his report )So de novo .started H&P regime Oct 21. A few side effects - itchy skin and diarrhea , but manageable .I’m planning a trip to Japan for July 

Hi, sorry I am new and trying to navigate the system. I commented on your post instead of creating a new discussion. Have now made the edit. 

So encouraging to hear these positive stories 💕
I was diagnosed last Thursday 28/9/23 with inflammatory breast cancer stage 4. Had my first chemo yesterday.

I have only just started treatment (Paclitaxel, Herceptin & Perjeta) for de novo stage 4 breast cancer (bones & liver). I have my 5th round tomorrow and I am hoping that I will be around to tell my story for many years to come. I am hopeful after reading your experiences.

I was on Herceptin and Perjeta for 6 years, I am on a break. they finally changed the rules allowing a break and my doctor had talked of stopping it after 5 years, I managaed to drag it out to 100 doses which ended  up being the 6 years due to a few delayed or missed doses over the years. I have had 2 scans that have been ok and I am due for a PET scan in  February so fingers crossed. My secondaries were in the 3 different lymph nodes so after Chemo, raditaion and the time on Herceptin he felt it was worth having a break. It is a worry none the less but at least I do have the option to go back on it. I didn't have too may side affects