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StephN · 09-02-2009, 11:11 AM

My debut with good old Vitamin H began in January of 2002 when I was found to be stage IV. I had it weekly with my Taxol and Navelbine for 7 months. Then changed to Herceptin only when my tumors were deemed "cleared and in remission." I stayed on that plus Zometa on the 3-week schedule for a couple of years, then reduced the Zometa over time.

It was difficult to determine what the side effects actually were from the Herceptin as I started it when still recovering from my adjuvent treatments and had it with two other harsh drugs.

Last summer I had a 9 point drop in my MUGA, so took a break, and have not yet resumed taking Herceptin. My Muga bounced back, so that is not the reason I am still off the drug. It is my choice for now after over 7 years of taking this drug. (There is another thread where going off long-term Herceptin is discussed.)

Now that I am well off the Herceptin and years out from the hard chemos, I can better assess what side effects were actually due to the Herceptin itself.

The main improvements that I have noticed (and in order) are increased energy; stronger, less brittle finger and toe nails; WAY fewer cramps in legs, hand and feet; and lessened "allergy" symptoms.

Plus I believe that I had more stress from the constant visits to the cancer center than I was admitting. That was part of my monthly routine, and having changed that, I am more productive in other areas of my life.

09-02-2009, 11:11 AM	#18
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Roll Call Long Time Herceptin Users My debut with good old Vitamin H began in January of 2002 when I was found to be stage IV. I had it weekly with my Taxol and Navelbine for 7 months. Then changed to Herceptin only when my tumors were deemed "cleared and in remission." I stayed on that plus Zometa on the 3-week schedule for a couple of years, then reduced the Zometa over time. It was difficult to determine what the side effects actually were from the Herceptin as I started it when still recovering from my adjuvent treatments and had it with two other harsh drugs. Last summer I had a 9 point drop in my MUGA, so took a break, and have not yet resumed taking Herceptin. My Muga bounced back, so that is not the reason I am still off the drug. It is my choice for now after over 7 years of taking this drug. (There is another thread where going off long-term Herceptin is discussed.) Now that I am well off the Herceptin and years out from the hard chemos, I can better assess what side effects were actually due to the Herceptin itself. The main improvements that I have noticed (and in order) are increased energy; stronger, less brittle finger and toe nails; WAY fewer cramps in legs, hand and feet; and lessened "allergy" symptoms. Plus I believe that I had more stress from the constant visits to the cancer center than I was admitting. That was part of my monthly routine, and having changed that, I am more productive in other areas of my life. __________________ "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.