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StephN · 03-05-2009, 12:09 PM

Dear Marily -
Gosh, I was thinking about you and wondering how you were feeling with these months off the Herceptin.
Since I did not ever have some of those symptoms you mention from Herceptin, I may not be a good person to answer. I found Herceptin to be quite gentle on my system.

However, after 3 months off (a break, since I am stage IV), the cramps of hands, legs and feet are sharply reduced. Nice to get a night's sleep without those pains!

Energy level seems to be a little better. Can exercise longer and handle more weight and resistence, but I DO work at that. Not much of a walker, except for errands and shopping!

Getting lab work with CA27-29 and CEA every 6 weeks. Will have my annual HER2 serum test with next week's labs.

MUGA - getting that next week as well, before my visit with onc.

I may extend my Herceptin Holiday depending on my results and what kind of close surveillance we decide on.

For cognitive function I am doing more crossword puzzles and other brain specific challenges. Making myself go through a lot of old business and personal files that badly need purging. It is work to decide what to keep and why.

03-05-2009, 12:09 PM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Marily - Gosh, I was thinking about you and wondering how you were feeling with these months off the Herceptin. Since I did not ever have some of those symptoms you mention from Herceptin, I may not be a good person to answer. I found Herceptin to be quite gentle on my system. However, after 3 months off (a break, since I am stage IV), the cramps of hands, legs and feet are sharply reduced. Nice to get a night's sleep without those pains! Energy level seems to be a little better. Can exercise longer and handle more weight and resistence, but I DO work at that. Not much of a walker, except for errands and shopping! Getting lab work with CA27-29 and CEA every 6 weeks. Will have my annual HER2 serum test with next week's labs. MUGA - getting that next week as well, before my visit with onc. I may extend my Herceptin Holiday depending on my results and what kind of close surveillance we decide on. For cognitive function I am doing more crossword puzzles and other brain specific challenges. Making myself go through a lot of old business and personal files that badly need purging. It is work to decide what to keep and why. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.