Anyone had harmful side effects from HER2 treatment protocols?

Newlifeat59

On Jan 2013, I was diagnosed with IDC/ER+ HER2+. I had a lumpectomy 1 1/2 weeks ago and now waiting to meet with the onco. In speaking with my surgeon, She basically told me that I will be required to undergo chemo, radiation, Herceptin and hormonal therapy. After reading about these drugs, I am worry sick about the harmful and side effects all these will cause on my body. Will I be cured of the cancer, only to develop failure or desease of other organs? I have read so many of your blogs and feeling a bit better but still worry about what to do. Do I have to take all of these or do I have a choice to modify the treatment? Has anyone done that? I live alone with no family near me, kids in college (they don't know) and very afraid.

Thanks you for getting back to me.

PatinMN

newlifeat59, these are good questions and you will want to discuss your treatment options with your oncologist. I was stage 1a with a tumor size of 5mm, which is sort of on the bubble for treatment with Herceptin or not. Recent research indicates a pretty high risk of recurrence for HER2+ even with very small early stage tumors. My onc showed me statistics indicating a 25% chance of recurrence without further treatment, which was too high for me, so I opted for Herceptin. Most oncs will not give Herceptin without chemo. I had weekly taxol and Herceptin for 12 treatments, which I pretty much sailed through. I did use cold caps to save my hair and they worked perfectly. I just finished radiation which is standard for lumpectomy, and the statistics back up the effectiveness. I pretty much sailed through that too. I will continue Herceptin every 3 weeks until September. For me, the more I've read since starting all this, the happier I am that I opted in for chemo and Herceptin. I was 60 at diagnosis. of course there are risks for the treatments, but I think the 25% risk of recurrence of breast cancer is far worse than the smaller risks of chemo and radiation. it's a tough decision to make, but you have some time to talk to your oncologist and do some research on your own if you're so inclined.

Newlifeat59

Dear PatinMN:

Thank You so much for getting back to me. I have been trying to research the stats on recurrence but have only found 10 - 15% compared to radiation  only, so you have given me a lot to think about. I am 59 right now so your story is very inspiring. Thank You so much!

Deris

Long Island NY

PatinMN

Deris, I'm happy to be of some help, and happy to answer any questions too, if I can. Have you told your kids yet? I'm sure they will want to know what's going on.

Seagreen

I just met with my MO this past Friday. I have finished two rounds of taxotere/cytoxan with Herceptin. At this last appointment she finally mentioned the possible side effects from the Herceptin. They will have to continue to monitor heart function, etc. It was very frightening. I don't want to beat breast cancer, only to end up with heart issues. I just felt that I need to take the risk. As a side note, I wasn't offered the use of Cold Caps and losing my hair has been so overwhelming and depressing! I hope that doesn't sound shallow.....but I loved my hair!



I wish you all the best.

Anonymous

New life, it is overwhelming I know. When you have. Lumpectomy, as mentioned, almost always comes with radiation.



Based on the studies so far, it appears Herceptin works best when given with some chemo. I had the same protocol that Patin had, and got through it very well.



SeaGreen, most times you are on your own figuring out the cold cap thing. And, they are usually not covered by insurance. They aren't cheap. I didn't do it the first time, but I might consider it if I have a recurrence. On the heart side, it is a possibility, but doesn't happen too often.



Please join the triple positive thread. There is a lot of Information there and great women.

PatinMN

Sea green, it is surprising that your doctor didn't mention the possible side effects of Herceptin until you'd already started treatment. But I think the heart function problems are not very common. Did you have an echocardiogram or MUGA scan before starting treatment? They usually want a baseline test to establish your EF or ejection fraction, which is where the Herceptin problem shows up. Then another echocardiogram or MUGA scan every 3 months or so. My oncologist told me that if a heart problem shows up on Herceptin, it's reversible. So don't worry too much about it.



As for the cold caps, I only found out about them by accident - a friend's sister had a vague recollection of hearing something about using "ice caps" to save hair on chemo. I started researching and found out that it is true. The sad thing is that my cancer facility is all set up with a medical freezer and a dedicated room for people using cold caps, and still the docs don't even bring it up as a possibility! It's such a shame that women aren't automatically given the option. But many oncologists don't know about cold caps, or don't believe they work. And you are NOT shallow for wishing you could keep your hair!

Jaytee

newlife....I finished my year of herceptin in Dec 2011.  My MO delayed the start of it because my ejection fraction had dropped  after my rounds of A/C chemo.  We finally got started on it a month later than originally planned.  I did have some further lowering of my EF...got down to a 42.  I told her I wanted to finish the course.  She did send me to a cardiologist......I was not happy about that..  I was taking a beta blocker and an ace inhibitor (for BP).   Last year I started walking....was very faithful doing it the first half of the year...then got busy and slacked off.  At my 6 month check up in Dec last year, they did an echocardiogram and my numbers were back up between 50 and 60 and  the doctor took me off the beta blocker. 

I think for most of us the benefits of herceptin outweigh the risks....but just be careful...be sure to let your doctors know if you experience any chest pain or shortness of breath.  As the others have said they will be monitoring your heart function with regular muga scans.   Wishing you the best with your treatment and sending you a hug.  It is just all so overwhelming at times!