What are the effects of Herceptin for HER2 positive? Not doing chemo

Did your doctor request a oncotype dx and if so what is your score?

Mine is 34, which equated to 4 rounds of chemo and 5 yrs of hormone therapy taking Tamoxifen daily.
My tumor was 2.5 cm, stage 1 and had mastectomy, left breast.

I don't have an oncotype score. It is all so confusing. Thanks.

I had a larger tumor, BRCA2 and Her2+. I had 17 doses of Herceptin and Perjeta after my chemo. No radiation. I am 65 and do not feel i had many side effects from the 2 kinds of infusions. I will say my friend who had stage 4 has been on Herceptin for a number of years and her cancer has stabilized. At 80, it is quality of life and especially if work is necessary. Let your doctor know. My hospital did not talk oncotype scores. My hospital is a research hospital in California.

Thanks so much. Glad to hear no side effects from infusions.

I haven't started infusions for herceptin. The biggest side effect is your heart muscle are they suggesting an echo before you start?? My doctor is, you should request them because of your age and financial concerns. The echo is easy, to have but you should be having them every three months and get your base line from first one. They will watch you closely if your heart seems to weaken during the first to third, they will stop the herceptin! Infusion about 30 minutes. Maybe a little longer. Good luck!!

I was disapointed when my onco told me they do not have oncotype scores if you are HER2 +. First had chemo which they very strongly advised (stage 1, 66 yrs. old). Did 17 herceptin/perjeta infusions, once every 3 wks, actual infusion in my thigh took about 5 minutes. Not uncomfortable unless the nurse goes too fast then it burns a bit, speak up and they will slow it down. Don't recall any real side effects, maybe fatigue. Wear stretchy pants or skirt you can pull up easily to reach your thigh. Heart echos every 3 months, thankfully no issues. Good luck to you!

When I had Herceptin in 2022, I was required to get it with chemo or my insurance wouldn’t cover it. I had Herceptin with Taxol for 12 weeks, then Herceptin alone every 3 weeks for the remainder of the year. I didn’t have any major side effects, just hives at first when I went to the 3 week infusions. My blood pressure was high the entire time I was on Herceptin. A friend of mine developed heart problems when she went to the 3 week infusions and had to stop. She now has a pacemaker due to the damage to her heart. It’s a lot to consider with the potential heart problems. From what I have read, approximately 5% of those on Herceptin develop heart problems.
I also did not have an oncotype score done. I believe it was because at the time HER2+ meant automatic chemo, but I think that is no longer the case.

I am not sure why you didn't get an onec score? Ask your breast surgeon, this score lays out your chances of cancer recurring, and helps with trying to decide what is the best approach to your cancer, future health, and what treatments should be the best for you? Call your breast surgeon back!!! have them email that sheet of paper, and schedule another appointment to talk with them.

Thank you.

@caredwards33
Herceptin does attack muscles and since your heart is a muscle that pumps that blood and you depend on this heart to pump blood, it's essential that you have ECHO cardio exams to get a base line and every 3 months. Do your own research, that's a must. When you have a starting point for your heart then they can tell if you are getting into trouble and stop or change medicine.
You are in charge here. So get the ECHO's, medicare pays for them. If not on medicare,check before you start. I have been told they are very expensive!! Find out what medicine they will pay for ?? This is life saving medicine that you need. Does this medicine address wht you have and what affects does it have on your body? As everyone is so different.