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Interesting and good news

13 REPLIES 13

Re: Interesting and good news

hi tina 46 - thanks for sharing your experience of this treatment - i have never heard of it, but then again i was only dx 17th nov so everything is new to me at minute and am trying learn very quickly and get some knowledge so i know what questions when i have my first mtg with onc.

when considering using this is the main things being pre menapausa and ER+ irrespective of grade of lump etc. i have looked at link attached and it just seems to say these 2 factors where you benefit.

many thanks xx TTM

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Re: Interesting and good news

Nothing major compared to chemo, like a bout of flu for a couple of days. Managed with painkillers. Worst part getting the canula in for the drip as my veins are rubbish!

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Re: Interesting and good news

Tina
thanks for all the info- could i ask if you have had any side effects from it ?
Melx

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Re: Interesting and good news

It's prescribed for 3 years ie six treatments not a continuous treatment. I had a full dental check up before I started, my oral health is very good anyway. Unfortunately, I haven't come across any treatment for this disease that doesn't come with a list of potential side effects, it's a very personal decision as to which risks are worth taking, for me, this was something worth trying to avoid recurrence.

Re: Interesting and good news

Tina

what does your team say about the main risks that I see with long term bisphosphonates, namely jaw osteonecrosis and blood clots. I see that in the study posted at the beginning of this link says that there was no occurrences of osteonecrosis in the women studied. I think the info that I have been looking at suggests that those with active cancer and treatment are more susceptible.

I am seeing my Onc in the New Year and checked that he has a private practice, which he does. This is definitely something I will talk to him about.

Many thanks for sharing your experiences

Karen

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Re: Interesting and good news

I finished chemo aug2010 and now on tamoxifen (pre-menopausal)& I asked for the zolendronic acid treatment after comparing adjuvant treatment in other countries ie USA and Germany where this is more standard treatment. Luckily my onc was agreeable to prescribe it "off label". I had two treatments to date.

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Re: Interesting and good news

Thanks Tina. I have an onco meeting in Jan ( one year since diagnosis) and i will mention this as i too am pre menopausal and hormone positive and want to have everything i can to stop it coming back even if i have to pay for some treatment privately x

Re: Interesting and good news

hi tina46, thanks for that info.

did you ask about this medication yourself then after finding out about or something, or did you onc mention it (even though you would have to pay for it).

i am wondering when i have first appointment with onc to discuss treatment what things i should be asking about. i know i will having rads and hormone therapy (tamoxifen i assume) as consultant surgeon mentioned it last week, but said that onc will discuss more in detail with me this part of treatment.

i am pre menanpausal (will be 40 in june) so wondering what options are (even if i have to pay).

any advice/thoughts much appreciated

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Re: Interesting and good news

We pay for it, I have it a local private hospital where the onc has his private practise. They charge £280 for it, it takes about an hour to infuse. I also had a blood test after the first one to check for kidney function.

Re: Interesting and good news

hi, i was wondering the exact same question as beardie?

thanks

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Re: Interesting and good news

Hi Tina
Hope u don't mind me asking but do you have zometa privately or has your onco said you can have it.
Melx

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Re: Interesting and good news

I have been following the Zo-fast, Azure and ABSCG-12 trials for some time, the article in The Lancet 4th June documented the benefit for premenopausal women. I am now having twice yearly Zometa (off label) infusions, but I know many oncs are not willing to prescribe this. Of course, this is not covered by the NHS or insurance companies.

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Re: Interesting and good news

Thanks for sharing.

It seems to be beneficial for those over 40:

"The participants aged over 40 with presumed complete ovarian blockade were 34% less likely to experience cancer recurrence, and also had a 44% lower risk of death. For patients under 40 there appeared to be no significant survival benefits."

Scary as the stats show that your prognosis is worse if you were 35 or under at diagnosis and worrying if new drugs aren't going to help us either...

Interesting and good news

http://www.medicalnewstoday.com/articles/238993.php

Article looks at the benefits of zometa In younger ER + bc patients