HER2 Support Group Forums - View Single Post - Stage IV

sabpri · 04-21-2007, 12:10 AM

First - I am so sorry to see you having to go through those struggles with your dad. It is already hard enough handling our own health issues.

I am glad to see there may be a resurectin of the Trovax vaccine. I have been waiting and waiting and waiting for it.

I also wanted to just give you my two cents regarding a Herceptin break. Now mind you, at this time, I am still waiting on my HER test results. Long story short, I had 2 major tumors at diagnosis, completely and totally different characteristics. One was ER/PR+, Her2-, The Other was this weird crazy unexplainable (which is always me) tumor that was triple negative, but had a small subpopulation of less than 10% of the total tumor that contained a very strong Her2+ expression. My Onc saw it as a triple negative tumor with a weird wacky possibly Her2 minor componant, so she put me on Herceptin for the standard protocal for one year. I went off Herceptin in October 06, and in January 07 my Tumor markers went up slightly above where they were hovering for the past year after completing treatment. To me it was a Red Flag, but everyone told me I was paranoid and it was a normal fluctuation of 6 points (from 15 - 21) and not to worry. At my next Apointment 4/4, my Tumor Marker was up to 32 and I freaked, even though it ws still below the cut off at 38 for CA27.29. My Onc said we would draw blood again and schedule a PET, but reminded me that I was being overly anxious about a normal flucation and I would call her telling her I told her so. I told her I had HOPED she was right and not me. Long story short, my Pet showed innumerable bone mets and one spot on my Plural lining. Luckily the bone mets showed lots of uptake in activity on the scan, but not any lesions or breaks in my bones yet. Everyone was shocked but me. Now I am waiting on the Pathology. I got back the hormone receptor status one and it was negative, so we know it is going to come down to the almighty truth of Triple Neg or HER2+. I am really praying for her to be wrong and it is Her2+. I did so well staying in remission for over a year, and find it questionable that after being pulled off it in October, my numbers did a blip 4 months later, then 6 months later it may be back. Just wanted to make sure you heard my side as you are conteplating your decision, and if you do decide to go off, make sure you are being heavily monitored.
Love,
Natalie
38 year old Mom to 3 year old twins and 5 year old daugther

04-21-2007, 12:10 AM	#6
sabpri Senior Member Join Date: Feb 2006 Posts: 43	My experience going off Herceptin.. First - I am so sorry to see you having to go through those struggles with your dad. It is already hard enough handling our own health issues. I am glad to see there may be a resurectin of the Trovax vaccine. I have been waiting and waiting and waiting for it. I also wanted to just give you my two cents regarding a Herceptin break. Now mind you, at this time, I am still waiting on my HER test results. Long story short, I had 2 major tumors at diagnosis, completely and totally different characteristics. One was ER/PR+, Her2-, The Other was this weird crazy unexplainable (which is always me) tumor that was triple negative, but had a small subpopulation of less than 10% of the total tumor that contained a very strong Her2+ expression. My Onc saw it as a triple negative tumor with a weird wacky possibly Her2 minor componant, so she put me on Herceptin for the standard protocal for one year. I went off Herceptin in October 06, and in January 07 my Tumor markers went up slightly above where they were hovering for the past year after completing treatment. To me it was a Red Flag, but everyone told me I was paranoid and it was a normal fluctuation of 6 points (from 15 - 21) and not to worry. At my next Apointment 4/4, my Tumor Marker was up to 32 and I freaked, even though it ws still below the cut off at 38 for CA27.29. My Onc said we would draw blood again and schedule a PET, but reminded me that I was being overly anxious about a normal flucation and I would call her telling her I told her so. I told her I had HOPED she was right and not me. Long story short, my Pet showed innumerable bone mets and one spot on my Plural lining. Luckily the bone mets showed lots of uptake in activity on the scan, but not any lesions or breaks in my bones yet. Everyone was shocked but me. Now I am waiting on the Pathology. I got back the hormone receptor status one and it was negative, so we know it is going to come down to the almighty truth of Triple Neg or HER2+. I am really praying for her to be wrong and it is Her2+. I did so well staying in remission for over a year, and find it questionable that after being pulled off it in October, my numbers did a blip 4 months later, then 6 months later it may be back. Just wanted to make sure you heard my side as you are conteplating your decision, and if you do decide to go off, make sure you are being heavily monitored. Love, Natalie 38 year old Mom to 3 year old twins and 5 year old daugther