Hi Ladies
Just wondered if anyone has experience of this intra muscular drug. Just had latest scans and AI’s not doing their job any more, so going to start this.
Just wondered things like how painful is it, how long does it take. Dreading it to be honest, as have become quite needle phobic since having cancer.
thanks
Jane xx
Hi Jane
I had faslodex from last December until August this year. Unfortunately it didn’t really work for me, my liver mets increased and the dose was doubled in the Spring sometime. I know when I was looking for information nobody on here was able to help me out, I went on breastcancer.org and there are lots of people in America taking this with positive effects and for most it seems to be working! i guess I was just unfortunate! So please don’t be disheartened by my experience! I have had failed Tamoxifen, Aromasin and femara too!
The injections aren’t pleasant, but are bearable! It is no worse than having a cannula or definately not as bad as Zoladex!!! It feels weird rather than too painful. It does take a while as it is an oil based substance, the nurses don’t like administering it, as it apparently hurts their hands! A couple of times the site of the injection was sore, but this didn’t happen everytime. I did hear that the injection needs to be at body temperature to minimise pain etc, and I have read of people who placed the syringes in their bras, waistbands! I didn’t do that though!!
Good luck with it, I hope it is successful for you any questions, please PM me, I know I felt very alone beginning this as nobody responded and gave me any feedback. Apparently it is very expensive, which may explain why it is not widely used.
Thank you for that Nicky,its very helpful and gives me some idea of what to expect. I’d never heard of it till yesterday and like yourself am struggling to find the info I want. I’ll have a look at that web site and see what I can gleen from that.
As much as I dont want it, I’m keeping my fingers crossed that it will work, or I’ve got to go back on chemo. I’ve been on Tamoxifen and all the AI’s and they’ve all failed within a short space of time.
Jane xxx
I had Faslodex on a clinical trial in 2009. (SoFEA - try a search 
) Unfortunately it didn’t help me.
But a tip for you… make sure the injection is administered sloooooowly. Otherwise a bruise may take a long time to go. Usually, there are a couple of days of slight “bottom effects” lol - and no need to take any tablets.
If anyone had really good response to Faslodex do tell us about it!!
Hi - I’ve just been recommended to try Faslodex for bone secondaries after failure of AIs. Has to be approved by PCT so not sure if/when I will get it. Don’t much like the sound of the jabs! Good luck to you
Falodex.
I am due to start this treatment any day now and have been told the side effects are minimal.
Just hope it works. Not looking forward to it but hopefully will just take it in my stride.
Would be interested to hear from anyone else who has been on it.
Cleomie
Hi, I had my first injections yesterday, and have to say it wasnt as bad as I had expected. I’d worked myself up into such a state and was shaking by the time I got to the hospital. The nurses were lovely, one came and held my hand, whilst another did the deed. I thought I was getting one jab in each buttock, but she did them both on the same buttock, side by side.
The injections stung more than anything,but it was over very quickly. It certainly wasnt as bad as having a cannula put in.
Today, my bum feels bruised, there is no bruise to see,but there is a lump you can feel. Walking is a bit uncomfortable today as is lying on that side, but am sure it will improve in a day or two
Jane
Jane, hope you don’t mind me asking, but have you asked your medical team to do a biopsy of your most recent secondary? You are no doubt aware that metastases can, and often do change their receptor (for example oestrogen receptive cancer can become Her2 receptive), and if this has happened in your case, endocrine therapy may no longer be appropriate.
Just an idea.
Thank you for that Lemongrove, somewhere in the back of my mind I know I have read that receptors can change, but not for one minute have I ever thought that might be my case, so something to bear in mind and mention to my Onc.
With regards to my cancer, I’m afraid I’m one of those people with her head buried in the sand, but I will have a look for some info on this.#
Thanks again
Jane
Jane and Cleomie
I too had a sort of hard lump on the site, but forgot about it soon after. I also didn’t mention earlier that I had no side effects, other than an occasional sore site. I had no hot flushes, or joint pain etc that all the other AIs seemed to give me. And it was lovely not having to remember to take a tablet everyday. One weird thing though, not sure it was just me but my wee was really dark and smelt horrible for a few days after the injections! I haven’t read this anywhere else, but it went back to normal after finishing faslodex!
Good Luck with it and hope you have some success with it! Jane I gather you are having a double dose, what about you Cleomie? mine was a single, then increased to a double when I had a little progression!
Lemongrove - I agree with the need to check secondary ER/PR staus and whether it has changed. I had a bone biopsy, so the information was available, my primary was 100% ER+ and 60% PR +, now they are both still at 60, so in theory should respond to hormones…but in reality they aren’t doing…which is so frustrating!
Thank you ladies for all this info. I had my first injections of Faslodex last night (and the dark pee thing stressed me out too!!) after being told that chemo wasn’t working and am now going back onto hormone therapy. Had a bad week (well, 3 - still in christies in manchester…) so was just looking for some reassurance over yet another drug being pumped into my system…
Hi Poannie
I was wondering how you were getting on, I’m very disappointed that the taxotere (was it?) hasn’t worked for you. With all the associated side effects, you at least expect a reward for all the suffering. I know how frustrating it all is, I have yet to find any treatment to halt progression too. I found faslodex side effects (apart from a sore bottom)to be non-existent. I truly hope that this one works for you!
Take care and stay strong xx
I am having the double dose 500mg in two injections, not quite sure when the criteria changed.
As for the dark smelly urine, I didnt particularly notice anything amiss, but I was just on an American Faslodex forum and it would seem it is a very very common side effect. Some ladies got it for a few days after the injections, some had it all the time.
I havent noticed any other side effects and my hot flushes are just as bad as ever.
xx
Thank you Jane and Nicky. I get my delightful 2nd injection of Faslodex next Thursday, but the hot flushes have started already!! Oh how I haven’t missed them!!
Nicky - It was Docetaxol that didn’t work for me, along with Epirubicilin and Cyclophosphomide (sp?) that didn’t work. I was even put on Xeloda, but to no avail :O(
They’re also putting me back on bone strengthening stuff, Zometa?
xxxxx
Note reference to Faslodex on this thread.
share.breastcancercare.org.uk/forum/viewtopic.php?f=42&t=34579&p=606960#p606960
Still wondering how long anyone has remained on Faslodex and had good results???
See recent post on here
share.breastcancercare.org.uk/forum/viewtopic.php?f=42&t=34938&p=614028#p614028