I started this drug a week ago, following progression in spine and chest/neck nodes while taking other endocrine therapy (Letrozole and Exemestane). Was offered Capecitabine, and wondering if I should have gone with that instead. My neck is aching (but I guess it would take a few weeks to kick in), and it’s making me feel a bit queezy (have lost 3lbs in one week, as I don’t feel much like eating). Would be interesting to know others experience - good or bad.
Hi lg
I am 2 months into faslodex (loading doses on days 1 and 14 then 2 further doses at 1 and 2 months)
I was really quite sick at first and lost about 1/2 stone. I had put it down to the brain mets but they are not treating those til tomorrow and all the nausea wore off about 3 weeks ago. It was probably the faslodex but I just didn’t realise it.
My onc is combining the faslodex with exemestane, not because he seems to think it will make much difference but because I read that combining anti hormonals sometimes meant they both worked better. He tends to roll his eyes and then go along with my request if he doesn’t think it will do any harm - not sure thats a good thing but we’ve known each other for 8 years now and often ‘discussed’ my treatments. He says the Internet was the worst thing that ever happened to him!
There isn’t a lot of evidence to suggest that they are working for me - my tm’s are still going up. My liver function is not really any better (some enzymes are worse, some are better). I have read that it can take anywhere from 2-6 months to have any effect. The prof has agreed to give it another month maybe 2 but if my liver function is looking really bad he doesn’t want to leave it 6 months.
Apart from the early nausea the only other side effect is a bruised bum! I have found that it depends on which nurse does it, but it does seem to me that a steady hand and a really slow injection results in less bruising. Other women have said that if you stand up but keep your weight off the side they are injecting (so swapping from one foot to the other as they do each cheek) is the best way to avoid bruising
If you go to breastCancer.org and look in their online community there is a long thread for and by women who are on faslodex. I found it very interesting
Cheers
Melissax
Thanks Tillycat. I’ve just had my second loading dose and am due to go back for the day 28 dose on the 25th July. Have to say I am having SE’s. The injections are no problem at all, but I feel quite queezy,have intermittent headaches, am not sleeping well, and am weeing more frequently (I know these are SE’s because they started with the first injection). Hopefully its doing its job, in which case I don’t care about SE’s.
Anyone else have experience of Fulvestrant?
Hallo ladies… Not quite there with ACTUAL experirence though likely soon… Could I ask a question? My consultant wans to put me on this ahead of resorting to more chemo (looks like progression in spine/neck and hip mets under aromasin) but no NHS funding. She has ordered full nuclear bone scan (CT scan showing hot-spots really only covered torso area) to both confirm degree of spread for poss rads targeting and also to assist in putting together a case to apply to the National Cancer Drugs fund for it. Did you have to do this and if so, how long did it take to get to first dose? I’m a bit concerned about further progression whilst on nothing effective…
Hi Haxted, my Oncologist prescribed it in June 2012 without question (no application for funding). Don’t know how he has wangled it because Nice have said it shouldn’t be funded. Guess he is just going to take the flack.
I had my first dose about a week ago. My nurse was fantastic. Sore injection site for a few days after. I put my slight nausea down to the fact that I’m having to take iron tablets for anaemia.
X Sarah
Tillycat, hope you’re OK, just want to check how things are for you. I’ve come off Fulvestrant now, as my consultant did a biopsy which showed my cancer is no longer ER+. It seems I’m now Her2 +, so I’m having a portocath fitted next Thursday, and will start Herceptin, Zometa and Capacetibine in September.
I posted something but it has disappeared-apologies if I am posting twice.
Just wanted to say how good it was that you had that biopsy and hoping for a brilliant response to the Herceptin for you
Love from Lavender
Thank you Lavender. The Prof sounds very upbeat about it all, so hopefully it will all work out. I’ve been meaning to arrange that cuppa with Chris at the Church, but have been out of circulation a bit, due to the seroma Op two weeks ago. Unfortunately, when they opened it up they found the skin was so friable they couldn’t stitch it to the chest wall after all (which was the object of the exercise). So now the seroma remains, I’m sore, the skin keeps bleeding and is taking forever to heal, and so threatens to delay the start of my new treatment regime. Grrr…
Anyway I’m going into Charing X for an Op next week to have the portocath fitted, and then we’re off for a weeks holiday, so hopefully we can all get together at the end of September.
That is maddening about the seroma surgery. Hope it settles down soon.
Have a good holiday, and see you after that
Lavender
xx
Had second injections on Thursday. Fine yesterday. Broken nights sleep and woke to a very sore aching knee this morning. Feeling a little wobbly. Paracetemol, pain relief gel, ice pack no relief . Weird! Anyone else had these probs? My unit seems very clued up on how to give the injections compared to some horror stories I read on the American site.
How are you getting on with this Tillycat?
X Sarah
I came off this one a while ago as my liver function was getting really bad ( I felt terrible and was pretty jaundiced)
My oc said that he wasn’t dismissing it, but he wanted to put me onto something that would work faster. I am currently back on paclitaxol. It worked 3 years ago when the liver mets were first diagnosed and, fingers crossed, it seems to be working again now. I will know for sure whe I go to see him on the 4th
LG I am so sorry to hear about your portacath fitting. So long without food is almost like torture, you would imagine it should be against your human rights! I hope that it works now it’s in. I have to say that mine is like a godsend. No more ‘hunt the vein’ I feel much more relaxed when I’m going in for bloods or chemo
Comercrab - I was told that any side effects tend to get better after the first few injections so hopefully things will get easier, fingers crossed.
Tillycatxx
That’s good news Tillycat about your treatment working and the SEs from Faslodex getting better. Have third loading dose in about a fortnight. On my first dose I was ok for a week then I had lots of muscle aches. This time ,so far, this horrible knee/ inner thigh pain. I wonder if the nurse has irritated the sciatic nerve somehow. Hope it will settle down soon. See onc tomorrow so will ask him.
X Sarah
Looks like a trial is due to start which combines Exemestane and Faslodex. My onc is hoping to get me on this combination through the trial in the next month or so… Fingers crossed!
Hi - Funding from the National Cancer Drugs fund came through in two weeks to the day and started treatment the following week. The injections themselves were not as painful as I had braced myself and side-effects from first dose hard to distinguish from the underlying bone pain I had started to experience. Upping the painkillers (Meloxicam) to include regular paracetamol and the odd 15mg codeine sorted that out and the slighlty sore site pain.
2nd loading dose last Weds and unfortunately, Zoladex tummy jab next day. Now experiencing queasiness, headache on and off and yes - that increased wee need! But not unovercomeable… Last loading dose next week and back to oncologist on Oct 4th to see if tolerating. No scans/blood tests till 3 months from start because Faslodex apparently causes a spike in activity initially…
Very interested to hear of this trial combining it with exemestane cos I too read about them doing that in USA…
As I’m typing this, the font is absolutely miniscule! How do you increase it anyone???
Just had my three loading doses so far and hoping I can stay on it. My skin mets look slightly better but maybe I’m kidding myself. Have my next dose coming Thursday when I also see my onc. Had a ct scan last Sunday so have a bit of scanxiety as well. Really hoping I can stay on this stuff. Get a bit achy and tired but apart from that I’m fine
X sarah
Have just had second monthly dose after the loading doses. I AM SOOOOOOO TIRED!!! And rather over-emotional/tearful! Is this the drug or just me, I wonder?!
Well - Faslodex not working for me in spectacular fashion and in the three months my tumour markers jumped from 149 to 489 and there has been more progrssion into bones and now, a small tumour in liver. Start Capecitibine chemotherpay on Monday and they also want to do a brain scan because I’m so scatty/tired. I have no headaches or anything and dont relish the thought of potentiallly losing my licence if they find something - but agreed in the end as felt it would be quite wrong not to take their advice and then maybe have a crsh and hurt someone…
I hope those of you still on Faslodex have better luck as it seems quite a tolerable treatment.
Dear Haxted
So sorry to read your news. Thinking of you and hope my story may be helpful to you.
I was in a similar situation having had Faslodex on a clinical trial (SoFEA). After I think 4 treatments, liver mets were found in Aug 2009. Had my ups and downs since then (long story) but I have been on capecitabine for almost 2 years now and it has worked well for me.