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Old 06-02-2006, 01:58 PM   #56
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Wink Herceptin since Jan 2002

Hi Lani -
Looks like there is a lot of info developing here.
Diagnosed Sept. of 2000. Lumpectomy, axcillary node dissection.
8 of 18 nodes positive. Hormone neg/neg.
Was already in menopause for about a year prior to dx. No hormone therapy ever.
I started Herceptin weekly (vitamin H - just add it to my supplement list!) in the beginning of January in 2002 along with Taxol and Navelbine for agressive mets.

Herceptin alone plus Zometa since July 2002.
Herceptin tri-weekly since July 2002. No breaks ever necessary.
Had a lot of side effects early on, but they have gotten better little by little, so I attribute most of them to all the various chemos I had in a short period of time.

Still noticing:
* Leg, foot and hand cramps from time to time - take Quinine that helps a lot.
* Some bone, joint and other aches and stiffness. Attribut some of this to the ANA positive situation that has developed with me. Not enough to interfere much with things I need to do.
* Intermittent runny nose and eyes. Not severe and take Allegra as needed for seasonal allergies.
* Skin peels on forefingers. Nails in good shape. Hair grows normally.

No stomach upset or gas problems beyond normal. No headaches.
Cognitive functions mostly ok.
Blood counts and liver functions stay well into the normal ranges and tumor markers are steady like a rock. ;-)

NOTE: I do get my infusion over 45 minutes - this seems to alleviate the slight flushing and redness that can occur if a shorter infusion. The infusion suite nurses say that other patients like a longer infusion as well.
I also hydrate myself very well and drink water and eat during my infusion.

Really feel fortunate this this drug is so benign as far as side effects for me. I still have some problems due to all the taxanes and the rest.

I work hard to eat well and get some proper exercise but get hit hard again when my brain acts up. After the Gamma Knife in Jan of 2005, I was a mess again. Fought my way back to good health and then had a brain surgery in Feb of this year. Getting back to normal from that now with the exception of a fluid pocket that has formed at the surgery site and needs attention.

P. S. There is NO follow up on those of us who got Herceptin as Stage IV. I asked about that in San Antonio to Genentech reps and they seem to think it is up to some recognized researchers to get a study together that approved by the FDA. The docs do not report to Genentech as far as I know.
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