herceptin how far from treatment

Les · 10-02-2006, 06:25 AM

Hi all,I'm meeting my new oncologist tomorrow my old Dr. retired without much notice last month. I am almost 3 years out from original diagnosis and 2 years from treatment 4 a/c 35 rads and tamoxifen for 5 years. I wasn't offered herceptin back then and when it did become available my onc said he would not recomend it for me. I had 1.3 cm idc no nodes er/pr+ her2+++. I am wondering if I should try for herceptin now or if you all think it is to late? Also what tests should I be asking for My onc didn't even order blood work at my visits I worry that I may have cancer other places and not know it. I lost a dear friend this summer to multiple myleoma she only lived 6 weeks from dx.I am scared because we had the same oncoloy group and I think that they are just too busy and people slip through the cracks . My group is connected to Dana Farber but I don't know to what extent I am thinking that I should go to Boston and wonder if anyone on the board had any recomendations ?

thanks leslie

Cathya · 10-02-2006, 10:51 AM

Leslie;

I would definitely ask for bloodwork and scans (you didn't mention if your onc had been doing regular scans over the past couple of years). I would want at least bone scan, chest x-ray, ct scan (MRI or PET would be better?), abdominal ultrasound so that I would be confident that I didn't have any spread anywhere. I have heard here in Canada of onc's doing this sort of thing as they receive patients by transfer. I would also ask for tumor markers including the Serum Her2 test done. If all was good I think I would be content to continue receiving blood work and tumor markers regularly (4 x a year as you are Her2+) and not receive herceptin at this point. If the Serum Her2 test was high I would ask to immediately go on the herceptin though. Please keep us informed.

Best regards,

Cathy

Les · 10-02-2006, 01:45 PM

thanks Cathy I have been very worried lately I will ask for tests and let you all know what happens

Les · 10-03-2006, 05:19 PM

good appointment today!!! I met with my new oncologist today and he didn't brush me off.I had x-rays and bloodwork and will have bonescan thursday. I feel so much better tonight.

AlaskaAngel · 10-03-2006, 08:57 PM

Les, I hope to review this again in a few weeks with another onc and would be interested in hearing what you decide to do and why... I saw 3 oncs for this last year and one wouldn't provide late Herceptin, one was on the fence, and the third didn't really give me a definite answer. I'm glad you are feeling so good about having had your appointment, and wish you the best with your bone scan on Thursday.

AlaskaAngel
HER2+++, ER+, PR+
T1c 2002, lumpectomy
CAF x 6 plus rads, tamoxifen briefly, and Arimidex

Cathya · 10-03-2006, 09:32 PM

Les;

So glad to hear things are progressing well for you. I wish you well with all your tests and do keep us informed.

Cathy

tousled1 · 10-03-2006, 09:38 PM

Leslie,

Glad to hear you had a good visit with your new oncologist. I would ask for a PET/CT scan as it is a non-invasive test that can detect cancer throughout your body. Good that you are having a bone scan but that just checks your bones and nothing else. I would also bring up the subject of Herceptin with him on your next visit. I know I write my questions down on a piece of paper as I think of them so that when I see my onc I don't forget. When you think of a question just write it down and keep adding to the list until you have your appointment.

Barbara2 · 10-05-2006, 03:14 PM

At my request, I received 1 year of herceptin 26 months after finishing treatment. No regrets. I didn't want to always wonder "what if I had tried herceptin........"

Les · 10-05-2006, 05:30 PM

you are all so great, I had the bone scan today and the tech said he didn't see anything but he is not the doctor, I did feel a little better hope he is right. next week mamo and I'll see my surgeon because the lumpectomy area isfeeling hard and sore. I will see my new onc in a month unless they find something and I will ask for the pet scan and talk about herceptin. thanks again Leslie