Stage 4 after 2 yrs being stage 2
 

I am looking for advice on treatment from any stage 4 women. I was just diagnosed with a pituitary tumor(her2/ER+) and a spot on liver and C7 vertebrae. I meet with my MO on Wed and would like to go in informed. He suggested on the phone we will do Herceptin/Perjeta/and something else. I am
looking for suggestions on that something else! Anyone use Kadcyla? Or anyone else? The pituitary tumor will be treated with gamma knife.

Thank you for any suggestions or advice on how any drugs have worked for you. Also, my MO doesn't do tumor markers, should I insist on them??

Thanks,
Kathy

Re: Stage 4 after 2 yrs being stage 2
 

Kathy, sorry to hear you have joined the metster club. The first shock of rediagnosis is terrible, but we are a resilient bunch and hope to continue living as best we can. There is hope in the ever-increasing array of treatments available, especially those targeted to Her2 and ER. I am sure you will get many responses to your post, but remember we are all different and respond to treatments in different ways.
It is very common to start with Herceptin, Perjeta and "something else" to knock the lesions down as quickly as possible. Then with luck, the Herceptin can give people long periods of stable disease. Listen to what your oncologist suggests, but always be open to getting a second opinion. I hope you can get a treatment plan established quickly and with good results. Best wishes..... Pam

Re: Stage 4 after 2 yrs being stage 2
 

I was on Herceptin/Perjeta/Taxol when it went to my lungs. It worked great. I am on Herceptin and Perjeta only now, to keep me NED. At some point, weather its 3 months
or 3 years, it may or will stop working and I will have to go to the next Level (as this disease reinvents it self) which may be Kadcyla.

I get pet scans every 90 days and I am getting one this morning. Please let us know
how you are doing and what course of treatment you will be getting, and of course any
questions you may have.

Re: Stage 4 after 2 yrs being stage 2
 

My tumor markers have always been in the normal range, so they finally quit doing them. For those whose tumor markers actually do rise and fall, it appears to be tricky figuring out just what they do mean. Scans (CT or PET/CT) are more informative (but still subject to interpretation.)

Re: Stage 4 after 2 yrs being stage 2
 

Kathy so sorry for this diagnosis and just wanted to wish you well and a great response with your upcoming treatment plan.

Re: Stage 4 after 2 yrs being stage 2
 

I've had good control with Herceptin, Perjeta and Xgeva for bone. Since I don't want to do chemo, that's worked well for me. You could start back on just the targeted therapy and see how your scans look in 3 months. Are you on an AI? I personally like to move slowly on the add-ins.

Re: Stage 4 after 2 yrs being stage 2
 

I was on Anastrazole but have been off it for 2 weeks with all the new stuff going on. The plan is to do Cyberknife to my pituitary tumor and will start Taxotere, Herceptin and Perjeta for chemo. My MO mentioned Zometa for the bone mets after radiation is done. I will be starting on a different AI. Do u know the difference between Zometa and Xgeva?

Re: Stage 4 after 2 yrs being stage 2
 

Re: xgeva and zometa, xgeva is a shot, zometa an infusion. In clinical trial, Xgeva was a bit superior in result. Most Oncologists switched their patients to the cheaper, easier and more effective shot. That said, there was a period of time that I switched back to Zometa, to see if mets responded better. Seemed to be no change, so I went back to the shot. Neither have much in side effects that I've ever felt, maybe ache after first infusion/shot, but could be all the other things, too :)

Sorry to not include the clinical trial results of xgeva verses zometa, you can easily google.

Re: Stage 4 after 2 yrs being stage 2
 

I started with Taxotere, Herceptin, Perjeta and Xgeva but we changed to Taxol, H&P and Zometa because side effects were affecting quality of life. I'm currently on a chemo break for three months, I'm still taking H,P,Z and have added anastrazole.

CA 27-29 seems to correlate for me. It was slightly high when I was first Dx'd metastatic, it came into normal range but has been creeping up for the last five months but is still normal. I have alternating CT with contrast and PET scans, one or the other every three months. I have bone scans every three months and thus far have declined any brain imaging.

I'm sorry you have progressed. I hope treatment isn't too difficult for you.

Re: Stage 4 after 2 yrs being stage 2
 

I did six cycles of taxotere, herceptin and perjeta and reached NED. Dropped taxotere and continue with H & P every 21 days. I have been on this regimen for over two years and remain NED. This has worked well for me and my quality of life is quite good without the taxane. You will not be prescribed Kadcyla unless you have done a round of chemo with a taxane. We all respond differently to the various "cocktails", hang in there and believe you are going to be ok.

Re: Stage 4 after 2 yrs being stage 2
 

I am keeping my toes and fingers crossed for you.