Need advice, Encouragement, put on chemo

[Barbara H.]

Hi everyone,
As you know from my previous posts I was orignally diagnosed in June, 98 and had ACT followed by radiation. In June O4 I reoccurred with a 3 cm brain tumor, left frontal lobe and mets throught out my system, skin, liver, lungs, and various nodes. Becasue of my daughter's wedding in July, my oncologist decided to start me on Herceptin alone. I had a great response and my tumor markers went into the normal range, at one point CEA was 0.03. Of course , I was hoping to be a long term survivor with Herceptin. This past November, I had another scare when an MRI showed possible reocurring mets. A crainotomy revealed radiation necrosois.
Recently my cea turmor marker has been creeping up and my oncologist thought I should have a pet scan. The difference from the scan in O4 is that my organs are NED ( the good news) but that I now have minimal beginning activity showing up in the bones. Although there is some positive news with all of this, I am rather down about having to add chemo because I was enjoying a rather good quality of life, and like everyone else is this condition, hoped it would continue.
My oncologist will be treating me with Zometa every 4 weeks and Navalbine 2 weeks on and one week off. I will continue with the Herceptine every three weeks. The sense I get from him is that I will be on some kind of chemo for the rest of my life. I don't think that he imagines that I will get to the point where I can be on years of maintanence Hercepitin. This is a sad thought for me. He also has not had a patient like me who has responsed so well to herceptin initially as I did, and knocked out that amount of disease by itself.
I had the teatment immediately last Thursday, (Zometa, Navalbine, Hercepitn). That evening I was feeling rather achy with chills, but was able to keep it under control with tylenol. The next morning I was fatigued, but didn't feel too badly, and went to school. Within an hour, my whole body was aching, I was feeling awful, and went home and stayed the entire day in bed taking tylenol every four hours. I wasn't able to go to the Brain Tumor Clinic on Friday and receive the results of my MRI. I had a bad night Friday, but by yesterday morning I was feeling much better. Today I am feeling a little achey again and wonder if it is due to the Navelbine.
Here is the email my oncologist sent me yesterday with my newest results:

"At 5PM on Friday the report of your MRI had not been posted. I did review the
two PET scans and they look quite different; some of the differences results
from changes in the technique between 2004 and 2006. In your case, very small
lesions can be seen by the PET scan. On CT the lesions are small and have not
caused much apparent damage to the bone. I am glad you are feeling better. I
don't think you will have the same reaction next week if you receive
chemotherapy on Thursday."

I would appreciate any thoughts you have about by current situation, and if there is any hope for me that the Herceptin will work alone again.
Thanks,
Barbara H.