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Any Advice / Experience of Faslodex

14 REPLIES 14
bikinggirl
Member

Re: Any Advice / Experience of Faslodex

Hi Barbara,

The first shot is a loading dose so you have two...(one in each cheek)!!!!
2 weeks later another shot and then it is monthly.

Thanks for the info on the trial...
interesting they are using it with other hormone treatment.

I hope the Taxol works well for you.

Spike great to know the pain in backside was worth £790!!!!

Spike
Member

Re: Any Advice / Experience of Faslodex

Hi Geobar

Do you mean just one dose of Faslodex? I've been on it for 10 months now I think.

In answer to Bahons2, it does have to be kept refridgerated. I went to my chemist to collect it the other day and found that someone had removed it from the fridge and put it on the shelf like the other medicines awaiting collection. The pharmacist was not happy because Faslodex costs approx £345 per shot! It had to be thrown away!

Best wishes

Spike
xx

geobar
Member

Re: Any Advice / Experience of Faslodex

Hi Girls

Details of the SOFEA trial can be found on the cancer research website. My understanding was that it was only available (unless you either paid or had private insurance) via the trial which is now a stage 3 trial. I think it ends in Dec 09. In the trial patients are randomised to either Faslodex and a placebo, Faslodex and Arimidex or Exemestane. Last year I was refused entry into the trial because the Nuffield hospital where I had my mastectomy op in 1993 have lost the tumour sample and without this confirmation of status I was ineligible. My Onc told me that I could pay for the treatment but after several meetings with the Nufffield, they have agreed to fund it.
Spike - I read your posts regarding your treatment in Germany for the liver ablation but my onc will not agree to it. I do think now that I have too many lesions on the liver and so I am hoping that the Taxol will work and then Faslodex will keep the cancer stable. I will be over the moon if it works for the same length of time that it has for some of you.

Can I ask if any of you had just one dose initially or did you receive a second one within the first month as a top up?

Barbara x

Bahons2
Member

Re: Any Advice / Experience of Faslodex

Hi all - thanks for all the info'.

I'm not on a trial, either. I'm in France and have just fnished a course of Taxotere.

This, probably sounds daft, but I really hate the idea of having to 'report in' once a month for an injection - sounds a bit like being on parole, or something! I'd much prefer tablets, but they don't seem to be available, do they?

Also, I don't go away (abroad) very often, but when I do, I tend to go for over a month at a time, so I'm afraid of finding Faslodex a depressing restriction. Does anyone know what the interval between injections can safely be stretched to? From what I've read, it has to be kept in the fridge before it is used, so my hopes of taking a dose with me as hand luggage for a local nurse or doctor to administer seem to have gone up in smoke, too.

I'm sorry if I sound obsessed by trivia on this one, but I'd value everyone's experiences, however incidental, with Faslodex.

BTW, thank you all for your good wishes, all, and please accept mine in return.

X

S

Spike
Member

Re: Any Advice / Experience of Faslodex

Hi

I'm not on a trial either. My liver tumours were dealt with by chemoembolization and then laser treatment which totally zapped them but I'm hoping that Faslodex will work by keeping it away from the liver again.

Good luck to those that are moving on to Faslodex.

Spike
xx

bikinggirl
Member

Re: Any Advice / Experience of Faslodex

Hi Barbara,

I'm not on a trial.... what is SOFEA?

I hope all goes well with the Taxol

Bikinggirl.x

geobar
Member

Re: Any Advice / Experience of Faslodex

Hi girls

Can I ask if you are having Faslodex as part of the SOFEA trial? So pleased to see that Spike and Smartie are having such a good response time from this drug and I hope that bikinggirl and Bahons have as good a response. I am due to start Taxol next week and afterwards have been told I will be given Faslodex. Having had Arimidex ( worked for 12 months) and Aromasin/exemestane which hasn't worked at all I am keeping my fingers crossed that this will work for me

Good luck to you all and long may it continue

Barbara x

bikinggirl
Member

Re: Any Advice / Experience of Faslodex

Hello again Ladies,

Thank you so much for relpying to my threat and its great to hear how well this drug has worked for you.
Long may it continue to as well for you.
I had 15 really good months on Arimidex so I am confident that I will get good milage from this drug.....

My injection didn't seem to hurt just a dull ache but I was injected in the top of the bum.....
Feeling a little sick and tired now but I'm happy as I feel in my mind its starting to work already!!

I didn't look at the size of the needle after reading your comment Spike but will next time now I know
I can be brave!!!! Has the tumor shrunk in you your liver or just stopped it growning anymore?

Jo thanks for the link.

Bahons Its really okay don't worry about it and at least once a month its done and your not reminded of this disease every
day by taking tabs.

Best wishes bikinggirl

Sam_BCC
Member

Re: Any Advice / Experience of Faslodex

Hi Bahons

I am sorry you are having problems with above link. Try going to the following link, it should take you directly to the downlaod of this publication.

http://www.breastcancercare.org.uk//docs/faslodex_jan_2008_0.pdf

If you are still unable to get to this and would like a copy of this publication please lease contact the publications team on 0845 092 0808 or email

I hope this helps

Best wishes
Sam (BCC Facilitator)

Bahons2
Member

Re: Any Advice / Experience of Faslodex

Thanks for your comments, Spike and Smartie.

Just wondering.... does anyone know why it is given as an injection and not tablets?

Was anyone given the choice of having tablets?

It sounds like a right pain in the you-know-where, both literally and metaphorically, to have to have an injection in that area every month/four weeks; I would much rather have tablets, if they are an option.

(Note to Faciltator Jo - have tried the link to your Faslodex factsheet, but it locks the website up on my PC).

X

S

Smartie
Member

Re: Any Advice / Experience of Faslodex

Hi there

I have been on Faslodex for almost two years after Aromasin stopped working for me (I have bone mets) - like Spike I have seen no real side effects other than a sore bum once its been administered - I find crossing legs helps for some reason whilst they are injecting! I have had good results with this drug - hope it works for you.
Smartie

Spike
Member

Re: Any Advice / Experience of Faslodex

Hi there,

I've been on faslodex almost a a year now. I have the injection into my bottom at my doctors surgery. I tend to put a numbing patch on the area to be injected an hour before which helps. The needle is quite large and thick and the actual liquid is very oily so has to be administered very slowly. Can't really think of any side effects because if there are, they just merge with the others for cancer treatment. I was on Arimidex previously which failed to work when my cancer spread to my liver so I was then moved on to Faslodex. Fingers crossed.

Good luck.

Spike
xx

Jo_BCC
Member

Re: Any Advice / Experience of Faslodex

Hi Bikinggirl,

Here's the BCC factsheet on Faslodex hope it helps. If you need to talk to someone more about this then please do phone the helpline and have a chat. 0808 800 6000

Faslodex fact sheet: http://www.breastcancercare.org.uk/content.php?page_id=3246

Best wishes,
Jo, Facilitator

Bahons2
Member

Re: Any Advice / Experience of Faslodex

Snap!

I posted about this a few weeks ago,but had little response....I may be starting on it in March.

Be interested to hear how you get on, bikinggirl.

X

S

bikinggirl
Member

Any Advice / Experience of Faslodex

Hi Ladies,

I am just about to start Faslodex and couldn't find much information so I wondered if anyone had any experience or advice they would like to share.

Thanks for your help

bikinggirl