I have just had my 5th dose of Faslodex (2 injections) and my legs from my knees to my hips feel on fire. I just cannot get comfortable. Paracetamol helps but as I can only take four doses in 24hours I am struggling to keep on top. I have tried Naproxene but they give me gastritis. I was awake until 2am last night in so much pain. I have also started to get restless leg syndrome when I settle down to watch TV at night.
I am worried that this will be a cumulative effect of the drug and will get worse each time. The nurse made me lean over the bed to stretch the muscle, normally I stand and relax each buttock before the injection. I wonder could this have caused my problem ?
Moan over, time for tea, toast and a wander round to take my mind off things.
Margaret
Hi Margaret
I’m sorry to hear that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00pm.
Best wishes Sam, Facilitator
I am glad to say that after 3 days that the burning sensation has calmed down. It doesn’t take much to bring my mood down to the floor, but I do feel much more myself today. I am disappointed in myself in that I don’t have more reserves to endure what is just a minor setback.
I am off to see my lovely Grandchildren now which will take my mind off everything.
Kind thoughts to everyone out there just trying to get through another day.
Margaret X
I have had issues like that and I take celebrex, it’s a drug meant for arthritis. It takes down the swelling at the injection site and settles down the discomfort. I’m on my 1st cycle after my 3 loading doses.
Just as one problem stops another one starts. Taking painkillers have given me a terrible pain in my side again (I had it a few months ago) I think I have gastritis. I took some Naproxene a couple of weeks ago when my ribs & hip hurt. After my Faslodex injections last week I took paracetamol and a few Ibruprofen.
This pain is debilitating and I am worried what to do about pain relief in the future. I will see my GP for help on Monday.
Does anyone have any ideas?
Margaret
I’ve sent you a pm xxxx
Well, two actually lol
When I saw my consultant almost 2 months ago she asked me how I was managing with the pain from Faslodex.
I thought she just meant the actual injection so said I was OK. Now 3 weeks after my last dose I am in a lot of pain in my lower buttocks ( where I sit). It is almost as if the drug has pooled in the cheeks of my bottom. It feels as if someone has kicked me and paracetamol don’t really help. It hurts when I sit, stand or lie down so I get no relief from it.
I hope, like a lot of things. it will settle down. Has anyone else experienced a similar problem.
I am going t o try codeine phosphate at lunch time.
Any adice welcome
Margaret
Hi Margaret
Yes, after one of my Faslodex doses I had a painful bruise that persisted for a couple of months… and eventually disappeared. I think it was when the nurse administered the injection too quickly.
If Faslodex works well, then it’s worth the “bottom effects” (but yes, pain control is essential!) Hoping you get really good results with this treatment and that the pain can be well managed.
Hi Margaret,
I have just developed similar back pain to you, pain in legs, especially hurts when sitting and lying down. Have been on Faslodex for three months. Nothing eases pain, am just asking for appointment to see oncology. What has happened for you?
Maria
Hi all. I’ve just been started on the Faslodex injections to treat my stage 4 metastatic breast cancer. So far I’ve only had the first dose and wonder if anyone else had had extreme back pain as a side effect? It started within 48 hours and I am so uncomfortable even though I’m taking oxycodone slow release and oxynorm solution for
top up pain together with paracetamol. The pain has been really awful and I’m finding moving about almost impossible and actually feel very out of sorts. Did anyone else experience this and if so did it get better or worse with tine? Hope you can help xx
Hi Nicky it was me and welcome to Helen
I really do not know if it was the Faslodex but the pain was bad it was like a band around the bottom of the back and lower stomach and groin. I took some oramorph which helped to kill the pain and within 4 days it went. I will be getting my second injection next week so it will be interesting to see what happens. But I have read that massaging the injection area does help so I will be doing that.
Love and (((hugs))) xxx
I am having my third dosage of faslodex and I also have terrible back and leg pain . I’m stopping Pilates because it causes even more pain.i do have bone mets on the lower lumbar and have started radiation treatments. The doctors feel that will relieve the back ,so far no relief.
I’m stage IV, finished 12 weeks pf taxol and HERCEPTIN, and two weeks ago got my first two shots of
Faslodex…Within 48 hours I had body aches, specifically hips, thighs and knees…Today should have been my second loading dose. Onco wouldn’t let me get those shots due to the severe side effects I got from
the first shot…Insane itching on face, neck, forehead, around eyebrows, red burning face…felt like I had received the world’s worst sunburn and face actually hurt to lie down on a pillow…Had an angry red rash on both sides of my nose that went down to my chin…spreading out with itchy red bumps that looked like tiny pimples…Then my knees, back and hips were in agonizing pain. I gained 6 pounds in 2 weeks…Doctor
put me on Prednisone (10 mg) for 3 days and told me to come back in a week to discuss how to proceed
from here…
I was diagnosed with B/C (triple positive) in 2011…In Dec. 2016, after being dizzy for a few weeks, an MRI
showed I had a brain tumor (HER Positive) which was treated with gamma knife…also PET scan showed
mets in liver, bone, lungs. After taxol and HERCEPTIN for 3 months, PET scan just showed "nothing
suspicious" So, without active tumors right now, I’m left with an aromatase inhibitor, again. I tried it for
9 months in 2013 after my first treatment go-round and quit due to unbearable side effects…I’d rather
deal with body pain than a systemic itchy rash. Although I’d rather not deal with any drug like this at all.
Bumping up this thread for new members especially Chris and ladybird
Hi Nicky 08, I will start Faslodex on Tuesday. I have been taking Letrozole for 14 months but it seems I have slight progression so this is next. Are you prescribed anything alongside Faslodex?
Evening Nicky
Hope you have good success with this treatment. Seems quite a straight forward having a injection in your bottom once a month. Saves having to tied to taking tablets.
When I was last chemo unit there was a lady there who had started on same treatment. Maybe eventually it may get more commonly used. If it does it take alot less time to administered.
Linda
Hi Nicky I’m not eligible for anything else either. I can’t even have Denusanab now as I had a few months on it with Letrozole and it gave me Pancreatitis. Best of luck xxxxx
Hi Nicky
Just wondering how your new treatment is going?
Noticed you have not posted much lately.
Have a good weekend.
Linda
Morning Nicky
Really pleased the treatment is going well with not many side effects.
Not heard of liver resection. Just wondering will that get of the liver mets?
I am doing OK thank you. Cap is a easy once you get used it. Worse side effect is watery eyes and runny nose first thing in the morning apart from that nothing major.
Hope you have had a good Easter.
Linda