HER2 Support Group Forums - View Single Post - Intro - and Herceptin and Tykerb for 30 yeard old with stage iv, mets to liver

flachica · 10-03-2010, 07:27 AM

Hi all. I have been reading this forum for many months, but haven't ever posted, so hello!! Now that it appears my HER2 status is being problematic in terms of maintaining remission, I think it is high time I get involved with you intelligent HER2 ladies!!

I was diagnosed with stage iv cancer as my initial diagnosis Christmas Eve last year. I had abdominal pain and went in. The doctor thought it was my gallbladder, but that came out as clear on an ultrasound. My liver, however, was found to have "innumerable, too many to count" lesions. A liver biopsy later, and a bunch of other tests to reveal the primary, I was diagnosed with advanced breast cancer. I also had a small spot in my L3 disc. Previously I was the picture of health! Weren't most of us though, right??

I was started on TCH on 1/4/2010. I had a scan after three treatments. My old oncologist mis-read that scan and said I'd had progression!! I could NOT believe that I'd had progression on TCH, so I began to hunt for a new oncologist. In the meantime, my old onc had me try to get into the EMILIA/TDM-1 trial. I did, but got randomized to Tykerb/Xeloda and had 2.5 cycles of that before my new oncologist, whom I had switched to (she's at Moffitt) said stop the trial, I looked at your scans (I had scans to get in the trial) , you are in remission - you need to continue on TCH! I was so thrilled to get that news, I just knew it!! I had really no side effects from chemo except hairloss and fatigue for a couple days at the end of treatment.

She continued me on TCH for 3 more treatments, and then we started just Femara (I am way menopausal based on my FSH score, which is tested every 3 weeks), Zometa and Herceptin. I have been on Femara, Zometa and Herceptin since July 19 (from June 24 - last chemo - to July 19, I was only on Herceptin and Zometa).

Had my first scan since starting this therapy this past week and got results, and....I had progression in several spots in my liver. I am devastated and very scared and frustrated. I had hoped to maintain a response on hormonals and targeted therapies because there are no side effects for me!

My onc has said something to the effect (I don't remember it all, I was a bit out of it at the scan result appointment) that when HER2 signaling is so strong that hormonals won't work. So I deduce from this that my main problem is my HER2 status but also that hormonals aren't able to work right now. My FISH score for HER2 was I think 8? Whatever it was, it was very very high.

So my onc has put me on Tykerb, along with Herceptin and Femara and wants to rescan me in 6 weeks. I know that Tykerb/Femara is an approved combo and that Tykerb/Herceptin is too - and my onc said my insurance may ask why I am on all three but we will deal with that later!

Is anyone here in this combo? Is any on Tykerb/herceptin after progression on just Herceptin alone? What has been your experience in terms of your disease/scans, etc.? Thank you for your help. I have seen that this board is a wealth of knowledge - - - thank you again.

10-03-2010, 07:27 AM	#1
flachica Junior Member Join Date: May 2010 Posts: 4	Intro - and Herceptin and Tykerb for 30 yeard old with stage iv, mets to liver Hi all. I have been reading this forum for many months, but haven't ever posted, so hello!! Now that it appears my HER2 status is being problematic in terms of maintaining remission, I think it is high time I get involved with you intelligent HER2 ladies!! I was diagnosed with stage iv cancer as my initial diagnosis Christmas Eve last year. I had abdominal pain and went in. The doctor thought it was my gallbladder, but that came out as clear on an ultrasound. My liver, however, was found to have "innumerable, too many to count" lesions. A liver biopsy later, and a bunch of other tests to reveal the primary, I was diagnosed with advanced breast cancer. I also had a small spot in my L3 disc. Previously I was the picture of health! Weren't most of us though, right?? I was started on TCH on 1/4/2010. I had a scan after three treatments. My old oncologist mis-read that scan and said I'd had progression!! I could NOT believe that I'd had progression on TCH, so I began to hunt for a new oncologist. In the meantime, my old onc had me try to get into the EMILIA/TDM-1 trial. I did, but got randomized to Tykerb/Xeloda and had 2.5 cycles of that before my new oncologist, whom I had switched to (she's at Moffitt) said stop the trial, I looked at your scans (I had scans to get in the trial) , you are in remission - you need to continue on TCH! I was so thrilled to get that news, I just knew it!! I had really no side effects from chemo except hairloss and fatigue for a couple days at the end of treatment. She continued me on TCH for 3 more treatments, and then we started just Femara (I am way menopausal based on my FSH score, which is tested every 3 weeks), Zometa and Herceptin. I have been on Femara, Zometa and Herceptin since July 19 (from June 24 - last chemo - to July 19, I was only on Herceptin and Zometa). Had my first scan since starting this therapy this past week and got results, and....I had progression in several spots in my liver. I am devastated and very scared and frustrated. I had hoped to maintain a response on hormonals and targeted therapies because there are no side effects for me! My onc has said something to the effect (I don't remember it all, I was a bit out of it at the scan result appointment) that when HER2 signaling is so strong that hormonals won't work. So I deduce from this that my main problem is my HER2 status but also that hormonals aren't able to work right now. My FISH score for HER2 was I think 8? Whatever it was, it was very very high. So my onc has put me on Tykerb, along with Herceptin and Femara and wants to rescan me in 6 weeks. I know that Tykerb/Femara is an approved combo and that Tykerb/Herceptin is too - and my onc said my insurance may ask why I am on all three but we will deal with that later! Is anyone here in this combo? Is any on Tykerb/herceptin after progression on just Herceptin alone? What has been your experience in terms of your disease/scans, etc.? Thank you for your help. I have seen that this board is a wealth of knowledge - - - thank you again.