Faslodex Side Effects?

[BJR324]

Hi Nicky

thank you for the reply. That does make me feel much better knowing that you had a reduced dose and it helped to shrink them. I had third chemo last Friday and now await the scan next Monday to see if it's working.

we live out in the sticks so I'm sure our local hospital will not do liver resection but it's something to think about for the future.

thank you for the information too about RFA I've now heard of this either so I will definitely remembering this for future. 

I hope you continyue to make a good recover from your op and have enjoyed relaxing in the sunshine this lovely bank holiday weekend!

Bel xx

[nicky08]

Hi

I am on Faslodex at the moment and fingers crossed its working for me - only time (and a scan) will tell!  Sorry to hear you had progression to the liver whilst not getting the hormone injections.  Hopefully things will settle down and Tax will blast those little uggers.

I have had Taxotere (docetaxel) back in 2014 and it worked well on my liver mets, shrinking them all although not getting rid of all of them, only the smallest ones disappeared.  I was on a reduced dose (75% of full dose if I remember correctly) and it still worked well.

I have recently had a liver resection (in the last month) to get rid of the largest of the liver lesions and they got rid of 2 small ones at the same time.  It depends on where the liver mets are as to whether they can operate so its not an automatic option, plus, unless your hospital carries out this type of operation rountinely I think oncologists are not keen to recommend it.  I am lucky that my local hospital is a leading centre for this type of surgery and they were more than happy to get me on the operating table!  As I'm on Faslodex I didn't have to stop treatment wheres if you are on chemo I understand you would have to be several weeks at least post chemo to make sure your immune system could cope, as well as not having chemo directly afterwards.

Depending on how many and what size your liver mets are you can have RFA (Radio Frequency Ablation) but again it might depend on what your oncologist thinks.  I was going to have that last year but the largest met had gone over the recommended size so they couldnt do it.

Hope this all helps with your questions, feel free to ask any more, I'll help if I can.

Nicky x

[BJR324]

Hi All

i haven't posted for sometime as all was going well, but as there has been some changes I thought after reading this thread I would do a post.

i had faslodex and denosumab 21 times and really had very few SE's so was lucky had scan every 3 months and bone mets remained stable so onc decided to leave me 6 months! Well at the onc appointment 3 months ago I saw onc for results he said that whilst bone mets remain stable but I now have liver mets, 2 a couple of centimetres and splattering throughout liver! Immediately put on taxatare 3 weekly, bad reaction to first dose, in hospital, then onc reduced dose for next dose, coped much better and was given figrastin injections for 7 days. 3rd dose today, then scan to see if it's working 14th. 

Im very scared that having the reduced dose means it won't be so effective, has anyone else had experience of this. My onc was very vague! Bit gutted he also left me 6 months between scans!

I'm no longer on faslodex but remain on denosumab. 

Im also interested to read on here about liver resection. I haven't ask my onc about this but have noted as a question for next time, is this a common treatment for liver mets?

i go to a local primary BC support group, but don't have any one else to chat too about liver mets! 

Thank you in advance for any advice you can give. 

[Carolyn52]

Ps : these pills are better than any fat club diet ..it wasent until 4 pm today realised I haden't eaten anything and my chocolate stash is building up in the cupboard ....xx

[Carolyn52]

Nicky

Think you have been very brave to do the surgery although I must confess that I haven't heard about this type of op before.

Knowing you nicky you will soon be off on your regular holibobs soon !!

Yes I'm on the devil pills E and E ..nearly a month ..thought I had mastered the side effects but tonight I'm sat here with trout pout swollen lips and my mouth is on fire ...I do so want to give them a few more months so hopefully there is something oncologist can prescribe ..I've got mouth wash and bonjela but it isn't helping .
Oh the joys of all this.

Hugs xxx💗💗💗

[nicky08]

I think it depends on how easy it is to operate ie how many and where the mets are. And take into consideration the general health of the victim, sorry, patient 😉. Overall I believe there’s not a huge change in overall survival rates whether you have surgery or not but for me I felt it was the right decision. Plus I’m lucky that our local hospital has excellent surgeons specialising in this type of surgery, patients come from all over the country to be operated on here so I knew I’d be in good hands. Having said that it is far more major than I thought so recovery will be slower although I’m doing pretty well.

Carolyn, thanks  for the hugs and best wishes. I hope you are coping well with E/E (if I’m remembering correctly). However I do remember  reading one of the awful SEs that you’re getting which is going off chocolate. Now, that is bad, I hope you’ve reported it on the patients scheme 😂😂🍫

Nicky xx

[LYNDYLOO]

Hi Nicky

Thank you getting back to me regarding my queries.

Pleased the operation on the liver seems to have gone well. That must be nice to think the mets have gone although you say there may be tiny particles.

Hope you have a speedy recovery.

Cap seems to be going OK. Not had many side effects watery eyes and runny nose and more tired than usual. Can't believe I have been on it 7 months already.

Wonder why all hospitals don't offer liver section if it means they can get rid of most of the mets.

Linda

[Carolyn52]

Hello nicky

Just popping in to send u loads of hugs and thinking of you. The sunshine and warm weather will help you recover better.

Gentle hugs xxxxc🌹🌹🌹🌹🌹

[nicky08]

Hi Linda

Actually my hospital doesn’t do TMs so I just have to wait for another dose of radiation every 3 months or so when I get a CT scan! Although I have asked about getting them done in the past I probably would be way too anxious every 3 weeks when I’d get the blood test results! Just like I was when getting blood results pre-chemo , I used to quiz the poor chemo nurses intently about my liver function results. 

As it is I’m not having many blood tests at all at the moment which is nice, and also means very few trips to hospital for my treatment. Faslodex is not causing me any problems as far as I can tell, although as I haven’t had a CT since starting it, I don’t actually know if it’s doing any good.

What I did have last week was a liver resection! A pretty major op that I’m still recuperating from, which is why I’ve been a bit quiet in here recently. I will do a more detailed ‘report’ on a previous Liver Resection thread soon but I’m just getting over the op itself at the moment. Anyway the surgeon removed the largest lesion;, the one that has been getting slightly bigger all the time (in between shrinking a bit on some treatments) plus 2 other much smaller visible lesions, so, in theory, I now don’t have liver mets! Well, I know I will have tiny seeds of BC but for now at least the biggest, most worrying one has gone. Just need to recover fully now. The good thing was that as I am on a hormone treatment, rather than chemo, I have been able to continue with it rather than take a break. I will find out some time end of May how things stand when I have my first CT since starting faslodex.

Hope you are doing OK on Cape, it is a very doable chemo and quite liveable with. I’ve just edited this post as I see you asked about IV chemo. No, I just had Cape on its own and for pretty much the whole 18 months that it worked for  me I was on an 80% dose if that helps.

Nicky xx

[LYNDYLOO]

Hi Nicky

Just wondering how new treatment is going..

Off the top of my head the hospital you attend does do tumour markers. I am getting abit concerned about mine as been on Capecebine 7 months and they are still 600 they had gone up to 1,000 in October. What chemo unit said don't get hung up on number. They were 300 in September then jumped up.

I know it is awhile ago since you were on Capecebine but did you have IV chemo at same time?

I know you are full of information thats why I thought I would ask your opinion
.
Hope treatment is going well.

Linda

[LYNDYLOO]

Evening Nicky

Thank you very much for explaining what liver section is. Once you have operation it must be nice to think they have got rid of them nasty pests. I really hope it will be not too long you have got to wait.

MRI scans seem to be much better than CT scans at showing up liver mets. I have never been offered one.

Good luck.

Linda

[nicky08]

Hi Linda

They will be removing the large pesky liver met that seems to react slightly slower to treatment than the other ones I’ve had. It is operable so they will remove it completely along with another tiny one near it and one other small met in another area of the liver.  Both these smaller ones showed up on a liver MRI but not on a CT scan. In theory I will have no liver mets but in reality I expect there will be tiny seeds of BC which will grow if other treatments are not successful (ie chemo/hormone) however by removing the largest one, and the 2 other smaller ones, as the surgeon said we are wiping the slate clean. I am aware that it is a major op with associated risks and recovery times but as I feel well at the moment it seems the best time to go ahead with it. 

Nicky x

[LYNDYLOO]

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

[nicky08]

Hi Linda

Thanks for asking. I’ve had the first dose plus the second, loading dose,and get the next injection in a couple of weeks. No real side effects that I have noticed other than a bit sore where the injections go into the buttocks on the day after. Managing to get this at my local hospital which means I’m not having to travel too far and will have an MRI after a few doses. I am going to have a liver resection as well, the surgeon at our local hospital is very experienced in liver cancer surgery but will update more once it has taken place as these things have a tendency to get cancelled or postponed.

Hope you are doing OK and are enjoying Easter

Nicky x

[LYNDYLOO]

Hi Nicky

Just wondering how your new treatment is going?

Noticed you have not posted much lately.

Have a good weekend.

Linda

[Bernie610]

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

[nicky08]

Hi Bernie

Im not elegible to have ibrance/palbociclib alongside fulvestrant which as far as I know is the only drug currently available which enhances the effect of hormonal treatments (Aromatase inhibitor type) so I am having it on its own along with the Denosumab that I have for my bones.

Linda, thanks for your good wishes. I have kept quiet about what my treatment was likely to be as I had no idea what it would be - although fulvestrant had been spoken about. I had a second opinion at The Marsden and was told I should have it and not chemo at this point. Luckily for me the local trust has just authorised it’s use in the last 4 weeks so I was able to get the injection about an hour after my oncologist prescribed it, and not have to fight for funding which is what I had expected to happen!

Nicky x

[LYNDYLOO]

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

[Bernie610]

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?

[nicky08]

Well, I have joined in this select group 😉having had my first injection this week. Will keep an eye on SEs, as ever, and report any particularly bad ones so it can help others, maybe! For information our local trust has authorised this for use, whereas NICE still don't, so I have been able to get this at my local hospital which is great news. Fingers crossed it works it’s magic.

Nicky x

[Moe]

Yes when I started Faslodex (Fulvestrant) I too have back pains, pain in the legs cramping like charley horses in the  legs part of my legs feel as if sunburned like a throbbing feeling, and whirling sensation when walking.

[Moe]

I am on Fulvestrant as well. I just said today part of my legs feel like their I'm fire like I got sunburned.

[Jo-G]

I am in the same situation, just had my third injection, so sleepy, my legs are very weak, I have a sore back and loss of appetite, I really want to find a routine daily to deal with side effects, but if it's more meds then I don't want anymore side effects. 

[Carolyn52]

Bumping up this thread for new members especially Chris and ladybird

[CariEve]

Hi.

How do you feel nowdays? 

I'm looking for answers about how to revert Faslodex side effects. I have seen sever fatigue, severe weakness in thighs and legs after several shots of that medicine. No benefits at all.

Thanks in advance for any orientation or information

[abcdefg1960]

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. 

[Jan-marie]

I have already had 14 injections of Faslodex.  It feels as though the bones in my legs hurt form my knees to my ankles.  I have found that exercising (like walking) helps.  Fortunately I have not had to have any pain killers except Tylenol sometimes.  I also wake up quite often having a hot flash.  The one thing that I have noticed is my PET scan in January showed some osteoporisis in my upper back and neck.  Never had that before.  I've not had to miss any work or stop any activities. Good luck to you.  I sincerely hope the radiation helps. 

[Bohlman10]

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. 

[Marirose]

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

[nicky08]

Hi Helen

This is quite an old thread so sadly I don't think any of the ladies who posted on here are still with us. You may get some responses but it might be worth posting again on the Bone Mets please join in thread in the Living with Secondary Breast Cancer section. I know one lady has started on faslodex recently and has similar aches (extreme aches) but can't remember which thread she has posted on and who exactly it is.

Nicky x

[RiddledHelen]

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

[Guest user]

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

[mrsblue]

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.

[Guest user]

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

[Guest user]

Well, two actually lol

[Guest user]

I've sent you a pm xxxx

[Guest user]

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

[Guest user]

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.

[Guest user]

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

[Sam_BCC]

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

[Guest user]

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