HER2 Support Group Forums - View Single Post - That's My Excuse (and I'm stickin to it!)

Annlyn · 08-14-2007, 08:30 PM

Kym, your story gives me strength and it was great to hear from Andi.

I've been feeling a little alone as well - not knowing any long term Herceptin users! I was originally diagnosed with BC in left breast and 7 nodes in November 1998. Had surgery, 6 months chemo (every side effect known to woman), radiation. Lost a lot of confidence in myself, my usually sharp mind deteriorated and I had the "who would want to employ me blues". I remember, even during chemo, struggling down the hill to the soccer field to kick with my 9 year old son. I soon learned to conserve energy by standing in the goals - he was a pretty good kick but the nets still saved me many a long walk! And then the even bigger struggle up the hill to go home.

I ended up in a soulless job and just a few months after I found the courage to leave it, I had mets to T9, ribs and about 30 spots on my lungs (November 2001). HER+++ER-PR-. I had a few weeks on Herceptin alone and then added taxol. After the 8th week there were no clinical signs of the disease so I stopped the taxol and continued with weekly Herceptin (and 3 weekly Aredia) till August 2005.

Since then I have had both Herceptin and Aredia 3 weekly with only an occasional holiday. Continual low grade mucositis and very cranky for 1-3 days after the infusion but my life is now wonderful. I am fit and healthy - pilates, gym, long beach walks, international folk dancing, lots of laughs!

I love my life but am starting to wonder if I can start to "fiddle" with Herceptin eg what would happen if I had it every 4 weeks instead of 3 or a lower dose or.... are there answers out there? I had 4 weeks between the last 2 doses so I could take some holidays and that 4 th week was sooooo good. I felt even more alive but I wonder if it was all it my mind rather the affect of a drugless week!!

Andi, I hope my reflections help - thanks for leading the way.
Annlyn

08-14-2007, 08:30 PM	#8
Annlyn Member Join Date: Sep 2005 Location: Marcus Beach Sunshine Coast Queensland Australia Posts: 19	6 years on Herceptin this November!!! Kym, your story gives me strength and it was great to hear from Andi. I've been feeling a little alone as well - not knowing any long term Herceptin users! I was originally diagnosed with BC in left breast and 7 nodes in November 1998. Had surgery, 6 months chemo (every side effect known to woman), radiation. Lost a lot of confidence in myself, my usually sharp mind deteriorated and I had the "who would want to employ me blues". I remember, even during chemo, struggling down the hill to the soccer field to kick with my 9 year old son. I soon learned to conserve energy by standing in the goals - he was a pretty good kick but the nets still saved me many a long walk! And then the even bigger struggle up the hill to go home. I ended up in a soulless job and just a few months after I found the courage to leave it, I had mets to T9, ribs and about 30 spots on my lungs (November 2001). HER+++ER-PR-. I had a few weeks on Herceptin alone and then added taxol. After the 8th week there were no clinical signs of the disease so I stopped the taxol and continued with weekly Herceptin (and 3 weekly Aredia) till August 2005. Since then I have had both Herceptin and Aredia 3 weekly with only an occasional holiday. Continual low grade mucositis and very cranky for 1-3 days after the infusion but my life is now wonderful. I am fit and healthy - pilates, gym, long beach walks, international folk dancing, lots of laughs! I love my life but am starting to wonder if I can start to "fiddle" with Herceptin eg what would happen if I had it every 4 weeks instead of 3 or a lower dose or.... are there answers out there? I had 4 weeks between the last 2 doses so I could take some holidays and that 4 th week was sooooo good. I felt even more alive but I wonder if it was all it my mind rather the affect of a drugless week!! Andi, I hope my reflections help - thanks for leading the way. Annlyn