hi ive been on tamoxifen for 17 months and was taking it in the morning. ive now switched to night and for me the se are not too bad. but i do find when the brand changes from time to time my se do go a bit worse xxxgaynor
its late at night and ive just taken my socks off to find horrid red rings around my legs where the socks have dug into my legs really really badly and i have tingly feet - fluid/water retention i assume?? was apparent a bit earlier today - is it likely to be Tamoxifan? what can i do to help it go away? should i ask the gp for tablets or will it go away itself?
hi may clear up on its own. but if not and worr
sorry keypad sticking. it may clear on its own. i find drinking a lot of water and getting into the habbit of going to the toilet every hour helps. if it doesnt clear talk to your bc nurse
thanks gaybar
claire
have only taken three tamoxifan and feeling pretty rough. having not had a break between chemo and starting to take tamoxifan, i cant determine whether the side effects are post chemo (i am 3 weeks post last one) or tamoxifan. any thoughts
i ache absolutely everywhere still and i am scared thast it is the tamoxifan not post chemo - if it is post chemo, i can believe the aches and pains will go but if it is tamoxifan???, is this is for the forseeable future??? i ache like and old lady but i am only 46 and i cant do half what i did before bc came along.
maybe i am being impatient but i just want to start to feel better and hoped i would post chemo…perhaps it just takes time for aches and pains to go eh?
claire x
bump
I spoke to the breast care nurses at hospital today cos i am fed up and scared by aches n pains and she was reassuring that it is as we think, effects of cummulative chemo and not tamoxifan - she said it can take a good few months for effects of chemo to clear and that fatigue can go on for many more months after chemo finishes.
she also said fluid retention is most likely chemo effects and also not Tamoxifan.
hope this info reassures some of you who may be feeling the same.
feeling very frustrated and impatient to feel better. part of me wants to do some exercise but my feet hurt and legs are swollen so cant really.
hope today been ok for you
claire
I asked pharmacist today to dispense APS brand of Tamoxifen for me. I have been on Wockhardt since January and am getting leg cramps and sleepless nights, so thought I would try a different brand. Pharmacist said APS was not shown on her computer so she couldn’t order it. She offered to order Teva for me. Does anyone else take Teva or have experience of it?
Pauline
Claire, I finished chemo last week (I’ll start Tamoxifen on 25th May) and in my second Tax I had fluid retention which has got worse again with the third one. From what I understand the steroids affect how your body gets rid of salt so you hold onto more water to compensate. It is a known side effect of the steroids. It can take a while to settle down so I’d give it a bit longer if I were you.
I just sit with my feet as high as possible for as long as possible and that does help a lot but by the end of the day my legs are like tree trunks - not a pretty sight!
Jane xxx
thanks jane for reassurance that it is most likely chemo than tamoxifan.
my legs are like tree trunks as you describe them yet again tonight - thought id got away with it then they were huge by 10 pm
claire
Hi little angel,
Though I would post to let you know that you are not alone with suffering from fluid retention.
I am 34, finished chemo end Feb (FEC and Tax) and suffered terribly but wanted you to know that it DOES get better! Also couldn’t find anyone else who had anything similar (apart from one lady I met at chemo). My final treatment was also reduced by 20% because of the s/e’s.
I am quite slim and found that I put on about half a stone and was unable to wear any of my jeans and lived in tracksuit bottoms for a few months. Also had to cut a few pairs of socks, around the elastic, as they were marking my legs really badly. But the pain was the worst, I have not felt anything like that before! I found it very difficult to walk and hardly went out of the house. I only had 5 weeks from the end of chemo before I started rads so had to make the journey feeling awful. Horrible! But slowly but surely it got less and less and mobility is back now, thank goodness.
Hang on in there, it does get better. xx
thanks bonnielass - i am 46 but feel like a 90 year old at times!!! i think i fell for the “chemo finished - must be better” line.
i sooooo want these aches and pains to go away and am pleased to hear that yours have and that you are feeling better.
i am going to my GP tomorrow to ask for “water tablets” to see if that helps.
difficult to distinguish the side effects of Tamoxifan when chemo is still in the body.
claire
Hi Claire,
Yes, its worth asking you doc re water tablets. I pleaded with my onc to give me them but he said he was a bit wary of doing so as they’re not great for your kidneys, esp after all the chemo. But he did say if things didn’t improve he would give me a low dose. but thankfully didn’t need them.
Might be an idea to run the idea passed your onc, just to be safe. You know how all of the drugs affect your body! But I’m sure things will start to improve soon (I don’t know how recently you finished chemo?). But mine took about 7-8 weeks to improve, so quite a while (was told in could be 6-12 weeks).
Hope you feel better soon. I know it is horrible, especially after finishing chemo and expecting to feel so much better, and you just don’t!!
lol xx
i am 4 weeks post last chemo - early days i guess
I went to have a chat with my gp yesterday and he said it could be up to a year after finish of chemo before you feel absolutely back to something like yourself. he confimed aches n pains/fluid retention and twitchy eyes/face all chemo related not likely to be tamoxifan. I got water tablets to help. (feel like my granny!!) - will ask onc when i see hime but have taken one anyway cos legs so swollen
Hope you enjoying sunshine today if you have it where you are
claire x
Hi there,
That’s good you got the tablets! Hopefully they will make a difference, but as you are only 4 weeks after chemo, it is still early days. (You will hate me for saying that!!!) Your doc said it could be a year before we would feel ‘normal’, oh no, that is not so good. I will be on Herceptin until Jan and obviously Tamox for longer but would say am getting there now. I am still very tired and need to build myself up on the exercise and walking front as did so little during the past few months. I would say the aches/pains are better (knees still a bit sore) and my eyesight has improved compared to what it was during chemo.
But we will get there! Hope you legs improve soon. Take care.
xx
ps. Live in Stirling, Scotland, so weather not great for this weekend. But quite bright and sunny at the moment so makes you feel a bit cheerier.
Forgot to say - try to sit with your legs/feet raised up on a table or stool (quite high). I was told to do that 3 - 4 times a day for about half an hour each time. I think it did help. I know it may be difficult to do with children but at least try to do it in the evening.
My legs also looked terrible, thighs looked like they had been ‘pumped up’ and my ankles and feet looked hideous. But try not to worry, it will get better. (I was so pleased when I could see the bones in my feet again - little things please little minds!!!)
x
when did the swelling in your legs /feet start to go down bonnielass?
Re. water retention - someone suggested Nettle tea and I found this really helped. Only had 1 cup a day, 2 max. Clipper do a nettle and peppermint one that is nice. Worth a try. x
Hi little angel,
In response to your question, the swelling in my legs went down about 7-8 weeks after my last chemo session. After this it got better gradually but now would say it has all gone (I am now 12-13 weeks post chemo.)
Hope that helps! With any luck the tablets will help you to recover quicker??!! Take care
x