Has any Stage IV decided to go off Herceptin?
 

3 years and 1 week today
 

I have been on Herceptin for 3 years and 1 week. Side effects=sinus problems and a runny nose. Tired the day of infusion. I have it every 4 weeks..sometimes I let it go to 5 weeks if I have a cold etc. If you go to 6 weeks you get a reloading dose. I went to London and had the serum test 6 weeks after a dose and it was normal. I wanted to see if my levels went up at all.
I have been NED the whole time..had a 15 mm liver spot.
First dx in 2001.
What I would like to do is have the serum test so I can see if the levels start going up...but the oncs in Oz are not convinced it is reliable enough.

If I was able to access the test at a resonable price I maybe could go off herceptin and see what happened...

Cheers
jackie (down under)

PS: take olive leaf extract, reishi extract,omega 3, flaxseed and Q 10.

Joe
I just passed my 5 year herceptin Mark....Muga last week 63% !!!!!!!!!

Oh my gosh, I just realized yesterday was my 7 year anniversary of being on Herceptin. Thought I would drop in to say that all is well, still alive and kickin! Also had Her2 Serum last month and still in normal range at 12.3.

Life is good! Kim

Re: Need Long Term Herceptin Use Info
 

DX in 2006 Stage 4 with mets to liver. Had lumpectomy, chemo of taxotere, carboplatin, herceptin, on a WEEKLY basis instead of once every three weeks. Had radiation after chemo. Have been on Herceptin weekly since 2006. Last sign of cancer in early 2007. Herceptin will continue indefinitely unless MUGA shows changes. Problems with weak, splitting nails, systemic edema, sun sensitivity and this is new=itchy rash that is sparse on arms chest and occasionally chest, comes and goes. Finding returning to full time work difficult because of swelling and pain in hands and feet.
Labs are always good.