Herceptin, PIK3CA gene mutations, Everolimus, and survival

TectonicShift

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kathleen1966

I have read this as well and it angers me that her2+ women are not routinely tested for this gene. I was never tested, but I assume that I must be negative as herceptin seems to have worked for me as I did not progress soon after herceptin ended (or while having it) I feel knowing this at this point would be of no benefit to me as I am 2.7 months from chemo. But newly diagnosed women should ask for this test!

annika12

I started herceptin this week and was never told or asked this !!!! I am having the genetic testing done in september will this be in the testing or do I have to specificly ask for it ??

kathleen1966

I think you have to ask. I had genetic testing for the brca1 and brca2....

TectonicShift

I hesitated to post this because I really don't want to cause anxiety to anyone who is done with Herceptin already and did not take Everolimus along with it. Please rest assured - MOST people do NOT have this genetic mutation. So if you took Herceptin chances are on your side that it worked. And even if you do have the mutation and didn't know it and didn't take Everolimus, it's not clear that everyone with the mutation fails on the Herceptin. It's just that survival rates are worse.

Annika is your genetic testing for the BRCA genes only or is it a more comprehensive test? Do you know the name of the company that is giving you the test? I would say specifically, "I want the PIK3CA gene tested for mutations on exon 9 and exon 20 so I can know whether I need to be on Everolimus." Print out some of the articles and take it to your doctor and let him or her digest this info, if (s)he doesn't already know about it.

For those of you who have already finished Herceptin, it might be worthwhile to see if you can get a Caris report, and if you have the mutation, tell your doctors you want an extra 6 or even 3 months of Herceptin so that you can take Everolimus along with it. It may be a tough sell but you'll be armed with new scientific reports. I've heard that even a short term dose of Herceptin is beneficial. So maybe a few additional months of Herceptin along with Everolimus if you have the mutation is worth fighting for.

By the way, I'll use this space to say this. I am technically Her2 negative. My breast tumor path reports (I had three done) all said Her2 was negative. But a forward thinking oncologist took a closer look at one of my huge lymph node tumors (over 2 cm and busting open with cancer). He thought it would be worthwhile to see if the overall pathology of the breast tumor was the same as the lymph node tumor. And guess what. The grade of the lymph node tumor was higher and the HER2 amount was higher too -- it was called Her2 equivocal meaning on the line between positive and negative. My onc used that to get me approved for Herceptin.

If you have a low-grade breast tumor but a lot of positive nodes, try to get a separate path report done on one of the node tumors. It might be very illuminating. In my case it literally changed the course of my treatment.