Change from HER2 negative to HER2 positive?

[MarshMom]

Has anyone had a change from HER2 negative to HER2 positive?

Taking Ibrance 100mg\monthly Faslodex injections for past 2 years. Tumor marker rise over past couple of months, CT scan showed 2cm met in liver all other bone Mets NED, liver biopsy results - my cancer changed to ER+/HER2+. Prior to biopsy Onc changed treatment to Xeloda 4000mg now says that due to the HER2+ I must go on Taxotere, Herceptine and Picqray IV infusion.

I feel fine, CBC blood work is impeccable with only low white cell count, no pains except bones, tumor marker increased only 20 points after one round of Xeloda.

Having trouble accepting the IV chemo treatment path at this time… My daily prayer is for God to give me wisdom to understand and for Him to guide me in this journey💕 Any insights appreciated…

[Nhorwath]

Hello -

You can consider only doing the herceptin infusion for the HER2+ part of your disease and going back on fulvestrant for the ER+ part of your disease. Or, do you have a PIK3CA mutation (which would result in the need for piqray)?

I also have HER2+ disease. Specifically, I'm ER-/HER2+ in my liver and in my breast I'm ER+/HER2+. For the moment, am only on herceptin. After just 4 cycles of herceptin, my mets decreased in my liver and bones. For the chemotherapy part of my treatment I will go on Xeloda at some point; however, am still waiting for my liver enzymes to reach normal (I had a liver injury from ribociclib.) I was given the choice to also do Taxol and I'm holding for the moment, due to my sensitive liver.

My oncologist has indicated there are many different ways to go about treating HER2+ disease and it doesn't always have to start with chemo.

Hope this helps and I'll be thinking about you.

Natalie

[POPS60 in reply to Nhorwath]

This is really interesting to me as you have 2 different types of cancer types.I started off with ER+/HER2- in my breast, spine, pelvis and skull . After 3 yrs successfully treated with Palbociclib and Letrozole I had progression to my liver and I now have a few lesions in my liver. So my original biopsy was then tested for P1K3CA mutation and I was found to have it so I am now on PIQRAY. However I have never been tested to see if my cancer has changed by looking at new biopsy's 🤔

My oncologist has said it is too dangerous to biopsy my liver, but I do worry that it is a different type.

Can I ask please how you found out your cancers were different? I am based in the UK so our NHS may have different guide lines. Thankyou. Xx

[Nhorwath in reply to POPS60]

Hello - we found out my cancers were different through biopsies. My liver was successfully biopsied with no complication. It is a tricky procedure, though, and I spent 4 hours in the hospital hanging out (and bloodwork every hour) to make sure I wasn't going to have a bleed.

I'm a patient through UCSF here in San Francisco. We're moving back to Switzerland in the Autumn, so will be on your side of the world :-).

[doulos21]

you may want to consider getting a second opinion.....can suggest Dr. Mark Rosenberg Boca Raton, FL....he is integrative and thinks outside the box....

[TammyCross]

Did you actually have a change from HER2- to HER2+, or is it that your old mets were HER2- and the liver one is HER+? As you see from other responses, it is quite possible to have a mix of types at different sites.

[purplelikep]

I was originally Her2- before I was metastatic but when I recurred as metastatic, my liver biopsy showed I was then strongly Her2+.

[Tazi127]

Well....im glad to see this post. My oncol didnt like small spots showing up on pet. I have mets to bone. So..he had bone biopsy done to see "if cancer changed" never heard of that before. Apparently 10% of patients have this happen. I was estrogen positive and her2 negative. Bone biopsy showed a change to triple negative. Now my options have changed dramaticaly. Im bummed... so started xeloda. 4 tablets am and 4 tabs pm. Had to stop after 9 days in. Sude effects wound me in hospital. Next, i think is iv chemo. Go back on monday the 6th. So....the journey definitly got a detour.

[Diana_Long]

my oncologist also said the type can change with Mets, which then changes treatment.

Blessings