After visiting the forums for around 5 months I have finally plucked up the courage to write, as I feel so utterly compelled to ask for help and understanding from anyone who is taking zolodex injections once monthly and tamoxifen daily, as medication to keep the cancer at bay?
If so, are you experiencing any side effects? Also I find the injection in my belly unbearably painful, is anyone having it injected elsewhere?
I was diagnosed end of Sept. 2007, aged 35, then masectomy, egg collection, chemo and radiotherapy! Am having reconstructive surgery next week, which is great news!!! (although somewhat scared)
Anyway to the point- I am very sensitive and have experienced every single side effect, known-to-man, with all treatments!!! I finally thought it was all over, however I have not been feeling myself for the last 5 weeks (since the day I started zolodex, so have only had 2 injections) and have been feeling more physiclly ill for the last 3/4 weeks! I do not know if its a flu bug or cold (no coughing or sneezing) or could it be the zolodex? I feel physically very weak, my body and joints ache, I have permenant headaches (never had before) more and more frequent horrible hot flushes (i know that is the zolodex) and I have 0 attension span and 0 concentration time for reading and even forget where I am in conversations! I am normally very active and now struggle to go for daily walks, becoming more weekly walks, which is distressing me as I have also gained around 5 kilos in 2 months!!! and am ravenous! (very unlike me)
I must confess to finally be feeling mentally stronger and happier however feeling so ill all the time is really starting to upset me.
Does this ring bells for anyone-please!?
Thank you for your time, as this message is a bit long!
PS. I must stress for anyone who is contemplating taking zolodex that they should take ANYTHING that the Drs suggest that might up your chances of the cancer not coming back and anyway I could just have a bug?
Thanks again Lipstick
Welcome to the forums, I’m sure your fellow forums users will be along shortly to offer some support. In the meantime have you thought about giving the helpline a ring or using the Ask the Nurse email service? The number for the helpline is 0808 800 6000, calls are free, lines open Mon - Fri 9am -5pm and Sat 9am - 2pm. For the ask the nurse service just follow the link below. Hope this is of some help to you.
Hi Lipstick
I’m not surprised you are feeling like you are. Chemo can give you aches and pains after it’s finished as well as Zoladex. I was on Zoladex and Tamoxifen after my 1st dx 5 yrs ago. I had terrible aches in my ankles when I got up so much so that I was like an old women 1st thing in the morning (I was 41!) They did ease up pretty quickly though and I didn’t suffer anything obvious during the rest of the day. When I finished Zoladex after 2 years they did go so I’m sure it was that causing it. There are a lot of threads on here about side effects of both the drugs you take so a ‘search’ should bring up some more experiences if you don’t get many replies. I think taking glucosamine (sp?) which is for achey joints can help but best check 1st with your bcn. I also think one of the reasons it is said you gain weight on Tamoxifen is that it has an effect on your appetite therefore you do eat more. I did gain some weight when on both drugs but it leveled out and was never too much - I was glad I didn’t keep piling the pounds on! Attention span etc is linked to the menopause - which you’ve just gone into very rapidly so unfortunately it’s not surprising this is a problem. I think you may find things calm down after a while, my flushes certainly did but it took quite a while. Your body has just been thrust into something it wasn’t expecting so it’s readjusting like mad rather than going through a slow, natural menopause.
I’m sorry that I’m not more positive about what’s going on but I don’t think you’re alone and some women have more of the side effects of Tamoxifen than others. Believe me, I know, I was one of them!
Take care and hope things improve. Try not to let it get you down, you’ve done so well up to now, and speak to one of your bc team or GP to talk about things if they get unbearable.
Nicky x
ps - Zoladex is a very big needle! You can have a local anaesthetic injections 1st but then you need a GP to administer it. Also some nurses are better than others at giving it. Also, as an afterthought, can you have the 3 monthly injections? Some women have them but also some women have been told not to have them so I’m not sure of the current view on them.
Hi
Glad you decided to post- I have been wondering whether to post on similar lines for the last few months. I am 32 and have been receiving Zoladex injections and taking tamoxifen for about 7 months.
First the good news, I definitely felt worse for the first few months with many of the symptoms you mentioned. At first I thought that I just needed to pull myself together but looking back over my emails, I realise that I was quite positive a few weeks after fiinishing chemo which changed about a week after starting zoladex.
I now feel almost normal but the old symptoms come back, to a greater or lesser degree, if I overdo things. I find that I need to take life at a slower pace and have more, ‘me’ time. I too am very forgetful some days. I teach and when I am tired I regularly completely forget what I am saying. I find this very frustrating and it is causing me some discipline problems. I am gradually accepting that I need to be a bit easier on myself -after all this is not forever and I do feel fine if I find time to chill. I am taking Evening Primrose oil which is helping a little.
I can not really help with the injection. Thankfully I have been lucky on that front. I have a very big belly which I believe helps- maybe you need more chocolate!
Good luck
HUGEST thanks for taking the time to reply.I am surprized that there arent more of us taking both tamoxifen and zolodex for preventative reasons. Thank you for your honesty, as all I need is to know is that I am not going mad and that others have had similar experiences. It is so freaky when you think your finally getting on with being normal when suddenly you restart zolodex and the side effects hit you and you feel weak, your limbs ache and you lose control of your body again! Well I know I am lucky to have the option to protect myself with zolodex. I just really hope that it will all calm down or I will never get a descent job and a lot of what youve said makes sense. Thank you for your advice and I sincerely hope you are happy and well and smiling!
Love Lipstick
I was warned about the needle beforehand by a friend who told me to make sure I asked for an anaesthetic cream to apply first & if the GP was reluctant, to tell them I was frightened of needles. There was no problem getting the cream supplied - the doctor said I had been well advised - and you apply it in a large blob & cover it with a plaster about an hour before the injection. It works a treat and needle didn’t hurt (only had 2 so far). The practice nurse does it & it’s the only time I’ve been grateful for putting on loads of weight !
I have the monthly injection & was told by my bcn to stick with that as long as I didn’t mind going to docs once a month as Zoladex is only licenced for monthly use not 3 monthly.
Hi Lipstick
I’ve been having Zoladex monthly for about six months. I buy Emla anaesthetic cream at the chemist (about £3) - apply it as Lizcat describes and when I have the jab I grab a lump of flesh around the area that it’s going in and pinch it hard as the nurse injects. I can honestly say that it doesn’t hurt me at all, but of course the nurse needs to do it quickly. Maybe try taking a couple of pain killers half an hour before too. I think some people administer it themselves but I couldn’t be that brave!!
I too was told that three monthly jabs are not licensed for breast cancer - only prostate cancer.
I also take Evening Primrose capsules, and feel that the aches and sweats have improved slightly.
Let us know how you get on
Tracey x
I started zoladex December 05 and finished last year November 07, one month short of the two years as I had had ENOUGH !!! i hated it but endured it as I knew it was for my benefit, but like you I think i suffered every side effect known, hated getting the injection done, always found it painful. I was thirty one at diagnosis so getting plunged into the old menopause so young grrrrrr !!! the joint pain was hellish, dry hair, night sweats, face sweats and shivers, not a good look, i also found that my lips shrivelled on my face - anyone else had this experience,they just lost there fullness as for the personal areas - well lets not go there !! thats a whole other saga, not good when you are supposed to be in your prime… I felt like an 80 year old. Your post reminded me so much of how i felt whilst having the injections and I can honestly say I do not miss them one bit, but if faced with them again if I had to I would go through it again, anything to try and prevent the cancer returning. That is the one thing I kept telling myself whilst going through it. A small price to pay… (didnt seem like that sometimes and perhaps easy for me to say now ) since finishing zoladex last year i had a few shaky months afterwards but can honestly say things are fine now periods are almost regular ( i am on tamoxifen also and dont think i am suffering any real side effects - perhaps weight gain round the middle or perhaps that is just the love of chocolate i Have )
Hang in there my friend, get a chillow pillow for the night sweats, a can of magicool to keep nearby, buy some replens and pamper yourself alot, anything to make you feel nice good about yourself.
The first time that I had a zoladex injection, it was agony! the next time I was really dreading it and had an appointment with a different sister at our health centre and the difference between the two experiences was amazing, the second one took a handful of flab and sort of squeezed/ twisted it and inserted the needle more from the side. I felt it, but it was much more bearable. I never went back to the first nurse!
Hi Lipstick, I just wanted to mirror some of what the other ladies have commented on. Yesterday I had my 3rd Zoladex inj (and my final one, as Ive opted to have ovaries removed - 8th Dec. Im only 36 and didnt fancy the thought of those injections for the next 5 years especially as I have two kids and dont want any more) Just wanted to say get the Emla cream, I get mine on perscription from the docs and I also take paracetamol before hand, had the first injection without anything and it was nasty to say the least.
Been thrown into this menopausal state at an early age is hard for us to deal with, I am taking Femara with my Zoladex, the side effects are c**p but we have to do what we need to do to give ourselves the best chance.
Good luck with it and I hope that your side effects improve with time.
Ness1 xx
THANK YOU SO MUCH for your responses!!! I was begining to think I was alone! Sorry I have not back to you sooner but I just have just had my reconstructive surgery. Sherbert and Maximise sounds like we have had similar nightmare side effects, but I really hope that they will subside as I am having my 3rd injection on Monday!!! and I dont think I can continue with this level of tiredness-talking about before surgery-(actually similar to that of chemo!) and severe aches and pains for another 21!!!!! What dosage of Evening Primrose oil do you both take? Has anyone tried Glucosamine? Thank you all for advice about injection I have been to my GP and I now have some Emla (will buy over the counter in future)-yippee and I will plaster it all over my stomach before Monday! Although if I continue eating this much I wont need anything! Please tell me the weight gain also calms down! Many thanks to Nicky-I too have tried several different people and my saviour is the nurse at my local surgery.
I suppose the way to look at it is that we are lucky to be able to take something that keeps the cancer away!
Thanks again,
Lipstick
Lipstick - I had my 3rd Zoladex last Weds & never felt a thing again, yipppeee !!! That cream is an absolute godsend and I am so grateful to my friend for recommending it. The nurse at the GPs surgery is excellent and said she had someone in earlier that morning who didn’t have the cream & found it painful so she’s going to get some !
Just read your original post again. I have gained 2.5 stones since Feb & gone from a size 8/10 to a 14. I know it’s all down to the drugs but is very frustrating. I try to get out each day for a little walk but have post-chemo fatigue even though I finished it a year ago & the weather is usually c**p !! Perhaps the New year will inspire me ! The lack of concentration etc is chemo brain - a recognised condition - and I have been SO frustrated by it. I find real difficulty in reading or even concentrating on a TV programme. Try to do crosswords etc to help. Look on the Cancer Research website for further info - I read it to my partner & he said ‘you’ve definitely got that’ and tells everyone I have in case I seem a bit odd from time to time, bless him !
Not to mention the hot flushes, anxiety attacks, joint aches…Still if they keep the cancer at bay or under control !!
Good luck for Mon - I put the big blob of cream on about an hour to an hour and a half before my appointment.
Hi lipstick, hope you are feeling okay after your surgery- I haven’t been brave enough to go down that road yet. Just a quick message, I take 1000 mg evening primrose and I take one - two tablets everyday. Just wanted to say again that although I have had many side effects, I have started to feel more like me recently so hopefully you will start to feel better in time. I was told that the first three months are the worst.
In the same boat - 37yr old - had 1st Zoladex last month. On tamoxifen too. Have never complained/grumbled thro any chemo or surg (had mastectomy and DIEP 5wks ago) - i let them prod and poke me when they couldn’t find a vein as my good arm inevitably has bad veins. But the Zoladex made me cry - now the fact that it was 3wks post surg didn’t help - i already had a flat tummy and had to put weight on for surg - now back to flat again - but taught so unable to pinch enough fat yet to help ease the pain on administration.
BTW I asked about the 3month injection - but seemingly its designed to be given to men fighting prostate cancer - unfortunately we need the once a month job! Typical - i’d say a man invented that one!!
On the weight side - i’m dreading the weight gain as always thin - have however gone to eating mostly organic vegetables and no meat. I will have small amount of meat when out or for special treat. Have also given up most of dairy products and cut out all refined sugars. Eating loads of fresh fruit and veg and drinking green tea and water more. Still have the odd coffee and the odd glass of red wine. Have appt with nutritionist at the Haven to tweek diet to ensure i get protein and enough calcium but have taken on board the diet recommended for oestrogen+ve BC patients and hopefully this will also help counteract potential weight gain and help me feel good.
Wishing you all well - glad to hear that i’m not over reacting to Zoladex injection
Thank you for your tips and concern Sherbet!!!. Am recovering well but dissappointed with results (but that is a whole other story!) and I always seem to get more and more emotional with each step! Which really upsets me because I should be relieved as it is all coming to an end. I had my 3rd zolodex injection on Monday with Emla cream and it was virtually pain free. YIPPEE!!! So maria I recommend you get some. I was off my food due to surgery until I had the zolodex and the next day became ravenous and havent stopped eating since then!!! I too have also been very slim but right now I have no choice!!! I hope that by zolodex no. 4 things will improve as It is more and more obvious how much it effects me. I have had constant headaches and I feel so so lethargic and have to sleep lots (do not know how i am going to cope with a job, starting soon!-quite frightening!) I also have a rash on my face?!- typical! no rash anywhere else except my face! I think i just feel so upset because I had no idea about side effects from hormone therapy and always wondered what menapausal symtoms were!!!ha ha!
But thank goodness for these forums and you guys!
Lipstick