Ha!Ha! Lovely you so totally got it! I get blank looks but I guess it's another of those till you know you don't know arenas! I am on a bit of a high had my 1st mammo last Tues and had letter saying I will get results when I see onc on 16th April! Nooooo! So bcn got them today whilst I was having my 'H' and they are clear!!!! Wahoooooo! Something nice for a change!! Wishing you a kleenex free time hug xxxxxxx
Hi Em, thanks for your support too, I'm loving the upended turtle analogy, haha, that is definitely one of my impressions of a morning!!!
Hi Susan, would be interested to know how you get on with the acupuncture if you go ahead with that treatment, good luck xx
have been suffering some bad side effects from tamoxifen being awful mood swings and hot flushes , the oncology nurses mentioned acupuncture today and are going to arrange for me to receive some locally
Bless you Simone you gave me strength when I was having work related probs, things slowly getting there and I so know how you feel! I really got fed up with myself and the tears! I am on Arimidex and have 3 more Herceptin , 2 after tomorrow and I am not sure which is causing what? Aches, stiffness first thing, I do a great upended turtle impression getting out of bed and stairs arghh! I have been put on anti d's and things are slowly getting there though I can still cry for no reason at times so lovely woman no you are most certainly not alone! Take care Em xxx
Ladies thank you so much for your comments and tips, sometimes it's just good to hear that it's not just me!!!!!! Simone xxx
I am 61 and have taken Femara and Arimidex which both caused all the physical side effects of A/I's but also affected my memory and concentration. Now on Tamoxifen for a month. Same physical S/E's but feel less cognitive S/E's. Main complaint is feeling very tired and weight gain.
I have been taking fish oil, glyclosamine and anti-inflammatories from time to time. Cant know if it helps because I dont know if I would feel worse without it.
I live in Australia and have just discovered swimming laps. This is great because its one exercise I can do which doesnt exacerbate feet, ankle and knee pain. I always thought swimming in a public pool was awful but I have managed to find a pool with good ventilation. For the first time in a year I can feel some tone and strength in my body.
In the pool I swim, walk forwards, sideways, backwards, kick board...
There are others doing the same thing who have had hip and knee replacements.
Bless you Ermintrude. I have noticed a slight change in the way you mention but for a friend of mine who finished her 5 yr course of Tamox a few years ago, excess discharge was her most noticeable SE. I would still chk with your doc tho. Xxx
Ok here goes - SE mentioned are sweats dizziness/lighthead nausea and dryness in the girly parts .... well I have the opposite in the girle parts - I was told if the flood gates open to go see the doc but what does it mean - does aybody know I am a tad worried and having to wear pads everyday as well as having achy boobs and joints !
Hi Simonwithane and all the lovely ladies. My experience of SE of Tamoxifen started with hot flushes & night sweats graduated onto extremely heavy periods (I passed out with pain from one) and chronic fatigue and mood swings. My crowning glory was bursting into tears in front of my boss - alpha male in City environment. Luckily this Alpha male is compassionate and supportive and told me he believes I came back to work too soon but will support me how and when I want to work while I am getting through this. So today I started on Citalopram cause surprisingly enough when my doc did a depression questionnaire I scored as Major Depressed. For an intelligent person I can be very dumb at times - I have spent the last few months feeling as if I've been trudging through treacle trying all sorts of schemes from exercise plans to positive thinking to get through this. Never considered that I might be depressed until my sister brought me an article in which Jennifer Saunders shared that Tamoxifen caused her to be fatigued (not getting up until 11 / 11:30) and depressed and when she was diagnosed with depression and put on Citalopram her life got a lot better.
Not every person will experience every side effect of Tamoxifen - some may get none. But when you get to the point like I did of considering cancer roulette by not taking Tamox due to SE then I think it's good to get help. I like being alive far more than being a hero. And it's really good to know I'm not alone.
Love and Strength xxx
Don't worry simonwithane, I've been there and done that too!! Terribly embarrassing, the few times it happened were very public but when it starts you can't stop, no matter how hard you try!
There are a few of us in BENCHLAND (another thread), we have a "crazy sobbing lady" bench and a "teary" bench so you are definitely not alone. xx
Well here's a new one for me that I'm really hoping is a side effect!! Today I burst into tears at work, for no good reason!!! Manager asked me to her office, for a chat to see how I was doing and before I new it I was bawling like a baby!!!!!! I'm boring myself now with all these side effects!
I started Tamoxifen in January and have suffered raised blood pressure and dizzyness since. Doctor has increased my blood pressure medication (ramipril, which I have been on for years) twice. No improvement as yet so he last week prescribed Stematel which is not working as yet. I feel guilty about complaining after the excellent treatment I have received but the 'lightheaded' is getting me down.
Any advice will be appreciated.
The tips here are great thanks very much. I am also taking starflower oil it is not making any difference but I am going to still keep taking them just in case they get worse if I stop. They are horrid what we have to go through!!!
It's great to get tips of each other. I read on another thread re starflower oil and it said that some found it worked and hot flushes went ho how nice that would be 😉
Hope we all have less as the weeks go by
just wanted to say thank you for the tips/advice. i will be starting this week with this medication and wondering what to expect.
The other ladies that have posted CM, Clare, RevCat have all given excellent advice and I don't think I can add to it other than a few natural things. I have been on tamoxifen for nearly 6 months now.
In addition to Star Flower as suggested by Revcat, I would also suggest Evening Primrose Oil caps high strength. onc/Dr suggested drinking sage or fig leaf tea (just pick the leaves and infuse with hot water) there is a worry about sage containing estrogen and thus if you are ER+ you might want to avoid adding anymore estrogen into your system my onc told me when I asked him if it was safe that it was ok to take sage as the amount of estrogen contained in it was so minimal it would not have any real effect.
My mother-in law suggested every time I get a hot flush to try to put something cold on my wrists, sounds a bit weird but actually it works, and stops the flushes straight away, if I'm not near a fridge, I tend to put my wrists on a small piece of cold slate that I carry around with me, also putting clary sage oil on my wrists helps a little.
Hope this helps
love and light
Ladies, thank you so much for your advice, will be having a crack at these tips.
CM, I'm liking the lying on the sofa option, fortunately my son no longer lives with me or I could have suffered the same fb fate!! heehee!
Clare, I consider myself lucky too, as I don't seem to be suffering excessively like some ladies, and if I only have to suffer the niggly se's then all's good!! I like to read ladies comments that are having minimal se's, otherwise I feel really bad for those who are suffering.
Revcat, might be investing in one of those little fans. I need to drink more water, but I'm struggling to like it again after trying to down it during chemo!!! Haven't had cod liver oil since I was a kid, obviously my mum had to catch me first!!!!
Lucy, thanks for the link
Thank you all, Simone xxx
In addition to the shared experiences here I am posting a link to the BCC 'Menopausal symptoms and breast cancer' publication which you may find helpful:
Hopefully your side effect swill settle down and disappear quickly. I am told most people's SE's either reduce or disappear within the first year... so I am one of the few where they don't. However, compared with many people I am lucky, my SE's are copable and I have pretty much grown accustomed to them.
Wise CM has covered most things really well.
Flushes and Night Sweats... I carry a little fan with me everywhere, and usually a bottle of water to help cool me down and rehydrate after bad sweats. I have a chillow (look on Amazon or Ebay, or currently on offer at half price from Chillow themsleves) which coolls me head at night, making the night flushes/sweats more bearable. I also tend to poke my feet and hands out of the bed, which looks stupid I guess (I live alone, so one to comment) but helps cool them, and me. At my one year check up the physician I saw suggested I try Star Flower oil which is about the only 'safe' non-drug thing to take. About £6-£7 for a box of 30 at Boots. So far (2 weeks in) not helping me, but may be worth a try?
Joint stiffness... I was told by the same doctor to take max strength cod liver oil with 100% RDA vitamin D. Again so far no change. I take the liquid stuff as that's the strongest (yuk yuk yuk) mix it with orange juice to mask the taste and gulp it down quickly! Doctor also said I could ask GP for brufen retard (slow release anti-inflamamtories) to take at night. I haven't gone that route yet.
Hope your se's settle down, and if not that you are as lucky as I am in having a doctor who believes in Tamoxifen side effects, epsecially the joint stuff!
Hi there Simone,
I am one of those horrid ladies that seemed to have no side effects from Tamoxifen, so it was the easiest thing in the world for me to take.
The only marked difference that I noticed was my skin, I suddenly looked younger...... It had taken on a completely different texture when on the tablets but seemed to bloom whena after a few months of not taking it.
I had some dryness, down below but even that got better with time but never got the night sweats or any of the symtoms CM mentions. I was 36 to 41 years old when I took it, perhaps it has something to do with what stage you are in life and what your bodies doing re menaporse.
Hope things settle down for you and like me you feel minimum effects for the next 5 years
* Layers of clothes that can easily be put on and off quickly as required.
* Carry a fan (battery operated or even a Spanish type that you can flick provocatively).
* Low dose anti-depressants. Work wonders. Careful with some, e.g. fluoxetine (Prozac) if you're on Tamoxifen, as some of these can affect how well Tamoxifen is metabolised in the body.
* layers of bedclothes. 2 thin duvets better than one thick one, so you can toss a cover onto the floor if you feel hot. Might also find having towels to lie on helpful if you have soggy hot sweats. Some of us are lucky to just get hot rather than melting into a damp heap.
* glucosamine supplements
* other jointy sups, others will have to add suggestions. Think maybe fish oils?
* water tablets from GP.
* Lying on the sofa with your legs up the back of the sofa well above your heart. Not the most glamourous look, but if it does the trick, who cares! One of my daughters took a picture of me on the sofa (bald, legs up the wall) and posted it on facebook as "this is how people do things in my house". It just made me laugh. What upset me was that I had my laptop on my lap playing solitaire, and it was a really rubbish hand!
Others may arrive shortly with other suggestions.
Just a quick question: I've read the side effects sheet that comes with the tamoxifen but it doesn't really tell you how to combat them!
Could anyone give me any tips and tricks to deal with my hot sweats, puffy ankles and stiff knee joints!! Only been taking it a month and I'm sure things might settle down soon, but just in case these effects carry on, I'd really appreciate some helpful advice, Simone xx