Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MyBCTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I don't want to continue Herceptin/pergeta and Letrozole for 5 yrs I have no QoL and I don't know where to go from here.

A MyBCTeam Member asked a question 💭
Kenosha, WI

I'm HER2 positive, stage 1 and I think grade3. I started chemo TCHP regiment a year ago, then had masctomeny and all lymph nodes removed were clear. I've only seen the oncologist 3x over the past 18 months and she said now i continue with Herceptin and Pergeta H/P infusions for a year along with letrozole for 5 years. I am scared to death at the thought of going back on H/P infusion for a year. Plus the side effects of AI. the thought that I could develop heart problems. scares me. I have severe… read more

January 20
 · 
Reactions
A MyBCTeam Member

Thank you everyone for your sage advice. A second opinion is where I'm going

January 21
A MyBCTeam Member

Linda, definitely get a second option. Stay strong and lean on your pink sisters to help. Hugs

January 21
A MyBCTeam Member

I guess I didn't day thst I was HER2+ estrogen positive. Stage 1. Grade 3.

January 21
A MyBCTeam Member

L4 Have you considered taking all your info to another oncologist for a second opinion? My diagnosis was HER2+, Stage 2, Grade 3- one tumor 2.7 cm with clear lymph nodes. I had surgery, chemo (TCH- No Perjeta) which took about 6 months. Once the chemo was done, I continued the Herceptin for an additional 6 months. I was offered Nerlynx as a continued medication (oral) as a follow-up to Herceptin. That med was to be taken for a year. But, with so little benefit (maybe UP to 2% risk reduction for recurrence) and the most common side effect being "chronic diarrhea", the oncologist agreed that it was not a protocol that he would push for me. That was almost 6 years ago for me.

Has your oncologist explained why if there is no recurrence, they want you back on the drug protocols- and Letrozole is a hormone blocker- but if you were only HER2+, then hormones are not involved with your receptor status. Please call your nurse navigator and see if they can review your case with you. If it still does not make sense, you may want to consider a second opinion. Peace of mind is priceless!! Gentle hugs!

January 20
MyBCTeam

How can you navigate concerns about continuing Herceptin/Perjeta and letrozole when side effects are affecting your quality of life?

First, your feelings are completely valid. Managing treatment side effects while dealing with grief and feeling isolated is incredibly difficult, and you deserve support and answers from your Show Full Answer

How can you navigate concerns about continuing Herceptin/Perjeta and letrozole when side effects are affecting your quality of life?

First, your feelings are completely valid. Managing treatment side effects while dealing with grief and feeling isolated is incredibly difficult, and you deserve support and answers from your care team.

Regarding heart monitoring with Herceptin, regular heart function checks should be a priority during treatment. This is standard practice because while heart complications can occur, they're monitored closely so treatment can be adjusted if needed. If you haven't had recent heart monitoring, this is something to specifically request.

For letrozole side effects, many members report that side effects do evolve over time. A MyBCTeam member shared that around the 4-6 month mark, their body adjusted and side effects became more manageable with daily exercise and stretching. Joint pain affects about one in three women on letrozole, and while it can be distressing, sometimes switching to a different aromatase inhibitor helps. Here are some practical steps you can take:

Advocate for yourself with your oncology team:
- Request a longer appointment specifically to discuss side effect management
- Ask about switching from letrozole to another aromatase inhibitor if joint pain is severe
- Request regular heart monitoring during Herceptin/Perjeta treatment
- Ask about the subcutaneous injection form (Phesgo) instead of IV infusions - it's faster and might feel less overwhelming
- Consider asking for a referral to a registered dietitian who can help with weight management strategies that work with your treatment

Address bone health concerns:
Since you've developed osteoporosis, ask your oncologist about bone-strengthening medications and what exercises are safe for you. Exercise and stretching can help with both bone density and joint pain from letrozole.

Seek additional support:
If you feel your oncologist isn't addressing your concerns adequately, you have the right to seek a second opinion or ask for more frequent check-ins. You deserve a care team that listens and works with you on solutions.

You're not alone in these struggles, and your concerns about treatment are shared by many others navigating similar decisions.

January 20

Related Questions

View All
I Was Supposed to Have a Baby, Not Breast Cancer
Today I choose to move forward...
Member Spotlight: Why I Joined MyBCTeam