IDC ER/PR negative HER2 positive treatment options

Hi!

Some women do Taxol + Herceptin + Perjeta (as either neoadjuvant or adjuvant treatment), but it's typically recommended for smaller tumors like those that are 1 cm or smaller.

I did AC+THP, and my heart was checked every three months through a MUGA test. I suffered no heart damage, either temporary or permanent. My oncologist prescribed AC + THP for me because I was relatively young (46) and otherwise healthy. She probably wouldn't have prescribed this regimen if I had pre-existing heart issues.

Taxotere can cause permanent hair loss, but only a very very very small number suffer from that side effect (though there are women on this site who have been among those few). The taxanes can cause gastrointestinal distress (Taxol gave me diarrhea). AC tended to make me feel spacey and out-of-it. But, I worked through both AC and THP.

My chemo regimen did get rid of all of my active cancer in my breast and my compromised lymph node. During surgery, though, my surgeon did remove a tiny pocket of DCIS.

Good luck!

I concur with hapa. Plus, if I remember correctly, A is shown to be associated with an increase risk of another cancer, I forgot which one. My local MO offered me TCHP. Went to Dana Farber center in Boston for second opinion and the MO there offered me both AC +Taxol or TCHP. I looked at potential risks of both and I chose TCHP.

I believe taxol replaces taxotere when the later cannot be used for various reasons. Clinical, solid studies exist for TCHP and AC+T only, so the docs tend to stick with protocols for which they have data on treatment effectiveness.

BTW, my hair returned and it is better than prior treatment, but my eyebrows and eyelashes, while they came back, they are a worst version of what they used to be.

Also, TCHP was a doable regimen to me. I worked during chemo. I did intermittent fasting and have never needed any of the pills they prescribed me to manage side effects. The worst side effects were from Neulesta, my bones hurt like crazy. I changed to the alternative and that solved the problem. I cannot say it was a walk in park since I was fatigued and had occasional constipation , but definitively I was operational and functioning.

Good luck with your treatment and best wishes with the outcome!

Mwgirl, you will note that we are a small club** being ER-/PR-/HER2+. Most other women who are HER2+ are also estrogen and progesterone positive. I found that I learned a lot from the Triple Positive Thread--it's very active and there are some women who are quite knowledgeable there, including some of the ladies above (https://community.breastcancer.org/forum/80/topics/764183?page=1277#idx_38287). Obviously, none of the discussion about hormone suppression applies to us, but there's a lot of good information on HER2 positivity there. One night while on steroids before chemo when I could not sleep, I read it from beginning to end. After I typed that I realized how ridiculous that sounds, but such is the chemo brain, I suppose!

I wasn't excited to sign the paper indicating that I understood I might never get my hair back, but like the ladies above, I did--and in fact, my hair kept trying to grow back a little during treatment, which actually looked worse so I shaved it a few times. I have read that some women choose to cold cap to try to avoid permanent hair loss, but after diagnosis my tumor was blowing up in size and time was of the essence--so I just started chemo. I did, however, use ice packs on my hands and feet during Taxotere administration (thirty minutes before, during and thirty minutes after) and have no neuropathy. I can't know if the icing prevented the neuropathy, but it was worth the effort and misery to have tried and I recommend trying because some women really suffer with lasting issues. I had a complete response, but had I not, my MO said he would have used Kadcyla, which had just been cleared for that use, right before my surgery. As an encouragement, a year ago today I was still bald and couldn't picture that my life would be as "normal" as it is this day--battle scars and all. I'm wishing the same for you.

**Kristi Funk, M.D., in her book, Breasts, the Owner's Manual, says HR-/HER2+ tumors account for 4 percent of breast cancers.

I can’t find the thread but I thought I read that ER/PR- HER-2 + tumors are more like triple negative. Which leads me to wonder if people like me that were 2+ and needed the FISH test to determine HER-2 status should follow more of a triple negative protocol.

I mean - am I less HER-2 positive than someone with a 3+ from the IHC test

Tara,

I'm sorry you find yourself here. The beginning is the hardest because the learning curve is steep, but you'll get there. If you look on the top left side of your screen, there's a blue button that says "help with abbreviations" . . . that may help you. I was treated at a National Cancer Institute Hospital and did not feel the need to get a 2nd or 3rd opinion--where are you being treated? In my case, my tumor was growing out of control and moving ahead with treatment seemed the most wise course. With HER2+ tumors, you can expect to start with chemo, even if it's small. As an encouragement to you, even though my tumor grew quite large in the two weeks after the biopsy, when they did surgery after the chemo was finished, they could not find one live cancer cell--only the tumor bed where it had been. Let me know if I can help with anything else.

Tara - I loved my MO (medical oncologist) - so no second there. I did get second opinions for my BS (breast surgeon) PS (plastic surgeon) and RO (radiation oncologist).

If you go to 'my profile' you can post your diagnosis and later the treatment. It makes it easier for everyone to respond if they know your stats.

Thanks for all the replies, and sorry to Mwgirlintx for highjacking her thread.

I met with a geneticist yesterday for a genetics test to rule out BRCA. I have an MRI scheduled tomorrow. My case reviewed in Tumor Board the day after, and later that day I see the surgeon again to hear more about my treatment plan. Right now, I don't have an appointment with the Oncologist until 2 weeks from now (because of availability) but that will change when the surgeon talks to the oncologist at Tumor Board.

I need to work on my profile. Some of the things everybody posts here in their profiles, I don't know. At least that gives me questions to write down for Friday.

From what I know: Dx 1/16/2020, DCIS/IDC, Left, 2.5cm, Grade 2-3, ER-/PR-, HER2+