What's left?

Grannyof3

Hi!

I'm hoping there's a her2 positive treatment expert out there.

I had my year of herceptin at initial diagnoses in 2012. All was right with my world until June 2016.

In June 2016, it metastatsized to my skin so I was put on herceptin again, perjeta and navelbine. I had a bone scan that was inconclusive for bone mets. Ct scan clear. Brain MRI clear. Phew! Continued on this treatment until October 2016. My tumor markers continued to rise. More bone scans. Spots would come and go. In October my mo changed treatment to kadcyla/tdm1. Tumor markers steadily rising. In February I was having excruciating lower back pain. Bone scan, Ct scan and MRI. Confirmed bone mets, plus a fracture in my sacrum. Woo hoo. Lucky me. Tumor markers jumped higher then they've ever been in April. On to tykerb and zeloda. All I can say is WTF??? (Sorry) Can I catch a break?

I was trying to find out what treatment is next, and from what I'm reading, I've had them all. Really? I see my mo next month and will ask him but right now I'm having a meltdown and I hate being weak!

Are there any folks out there with her2 knowledge?

Any input would be so appreciated.

As always, hugs to All and thanks for reading my rant

Oh, and gramen. I wonder if my kadcyla failed because it followed navelbine?? I showed that video to my mo

dawny

Hi Grannyof3

Kadcycla didn't work for me, as I morphed from ER-/PR- HER2+ to Triple neg. Well maybe not morphed, as my Onc believes I had both at the same time. Could this be the same for you also?

Wishing you all the best x

Grannyof3

Thanks for responding, dawny.

When I got my skin mets, they were biopsied and were her2 positive. With my first round of tratment they went away. Now with these pesky bone mets, they don't seem to want to leave, but are jumping from place to place. My mo said the bone mets are either too small or not in a spot for a biopsy. As I'm also wondering if maybe they are no longer her2, I've scheduled an appt with my bs to see if he has any ideas.

Needless to say, I'm getting scared. I'm not ready to die yet, damnit!

All the best to you

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