Shouldn't I have more treatment???

Hi, I was diagnosed with bone metz in the spine and hip in April this year, my blood markers had not changed and so from blood tests alone it would not have been picked up.

They have started me on Zometa which i will have every 6 weeks and today I am starting the first of five sessions of radiotherapy.

I was on Arimidex due to being post menapausal as they removed my ovaries when i had the mastecomy. This they are changing to Tomaxafin, which I am still waiting for the prescription. The last bone scan that I had before being re-diagnosed was a year ago.

My question is should this be the only treatment that I have. I am hormone receptive and HER2 positive. I had Herceptin the first time round which I asked if I would be going back onto, but my oncologist said no.

My question is what treatments are usually used for secondry to the bone, shoudl i be back on herceptin? as I feel that they are just relying on 5 sessions of radio, change of hormone therapy and the Zometa to contain it.

Would welcome any advise
Karen x

Hi

Bone mets- what happened with me

I’m er- Her+

I was diagnosed with bone mets in May 08 (hip and spine), I had 10 rads+ zometa every 6 weeks. My onc gave me a choice of chemo or not, I could’nt get Herceptin without the chemo. Maybe your onc wants to save the chemo (the big guns for later!). My consultant said I wouldnt be getting chemo for bone mets as they would save it for later. The onc then rang me at home and asked for me to go in and see him. He said the choice was mine and I decided to have the chemo/Herceptin.

Sue x

Hi Karen,
I don’t know much about it really, but I get the impression that treatment for bone mets is aimed more at relief of symptoms, as they are less life threatening, and as Sue says, they save the chemo for if/when other organs are affected. I’ve got liver mets and I’m on herceptin and tamoxifen. Why are they changing you back to tamoxifen? I thought it was only for pre-menopausal women. It’s all a big mystery isn’t it? Maybe you should contact them again and go in armed with a list of specific questions. They should be very willing to answer your questions - you have a right to information on your treatment and the reasoning behind it.
Good luck
Jacquie x

Hi Sue and Jacksy
Sorry for long delay.

Well I’ve had 5 sessions of radiotherapy and settling down to getting used to the Tamoxifen. Starting with the hot flushes again. I asked why they changed me to Tamoxifen and they said that the Arimidex didn’t work hense the cancer being back. It seems that my body is fighter in the hormone department. I have asked them about the Herceptin and again they don’t want to use this as yet as it really didn’t do its job when I was having it before. My last herceptin was at the end of Nov 08 and I started with neck pain in Jan 09. So they are probably right, it didn’t work for me.

I am having Zometa every 6 weeks and the first one took the nurse 4 attempts to canulate me which i finsihed up black and blue. I should have had my second zometa yesterday but after 4 failed attempts to canulate me and wriggling the needle about inside trying to find my viens i went home. I was in agony and have never experienced this before not even while i was going every 2 weeks for chemo. My arm is sowlen and bruised this morning. I go back on Thursday to try again but this time a different nurse will do it so hopefully it will be back to the good old viens and get canulated on the first attempt.

I have an appointment next week to discuss how I have been since the radio and with the first couple of zometa at which point an appointment will be made for another MRI. So I think I will wait and see what this brings up. I’m getting married in september so don’t really want the chemo but if the MRI shows that the cancer is worse then I will tell them that i want it. Fingers crossed hey!

How’s your treatmet going Sue are you getting through your chemo ok?

Karen R