I’ve been on tamoxifen for 6 wks and pains and aches in hips and legs severe, waking me at night and moving poorly in the mornings. Cramp also in feet. I do speed walk but this has been curtailed due to rads this month, still walking around village x3 weekly. I saw onc yesterday who has taken me off tamx for 3 wks to see if that is the culprit. If not, more tests.
Has anyone else had a problem?
I feel I’m making a fuss after reading what some of you ladies have been through and have had to put up with. Early bc, bypassed chemo, doing rads now.
Would be grateful of your thoughts.
Toffee
You are following the same path as I did Toffee ----- when I discovered I was bypassing chemo I took great delight in telling ppl I was ‘just having rads’, but as you will have discovered there is not such thing as ‘just’ rads… it’s flipping hard going ain’t it!
I’ve been on tam since mid feb and have had the odd hot flush, some aches and pains and a ‘personal’ itch which is most annoying.
Hope the pains subside soon.
I’m exactly the same Toffee. I don’t think enough is broadcast about hormone therapy. I didn’t have chemo but really suffered during rads and am still suffering on Tamoxifen…nearly 2 years now. The hot flushes are better but I ache all over and have a lot of joint pain in my feet and hands and cramp in my toes. The response I have had is that I have no choice and will have to cope.
Love
Debbie
There may be some hope in the dim and distant future tho … I didn’t see it myself but my Mam caught Richard & Judy last night and apparently they are trialing a drug currently used for hormone receptive prostate cancer with the idea of using it as opposed to tamoxifen - apparently no side effects and hope to be available in 3 years time.
Might see if I can get the show on catch up as it sounded interesting.
Hi Toffee
I think we started Tam about the same time.
I too am having terrible joint pains especially in the mornings or if I have sat for a while. It doesn’t last long. They seem to go when I start to move.
I don’t want to have to stop the drugs because I think this is the belt and braces to keeping the dreaded C at bay! But on the other hand, I don’t think I can stand it for five years. So, what to do? Also, I haven’t had a good nights sleep for as long as I can remember because of the hot flushes.
I don’t see my onc until Sept so will ask about the alternatives then.
Hi Greenpea
I have been on tam coming up for 3 yrs and believe you me i didnt think that i would be able to stick on it but i have, the side affects do calm down abit, mind you the sleeping is still abit rough getting around 2 cant get back to sleep, but as for the hot flushes they do subside, try and give it so time so settle…x
Im sure some of the side effects do not appear at first. Im only now beginning to have sleepless nights, up at the crack of dawn etc, maybe its the tamoxien or maybe Im stressed about other stuff. Ive been on it for nearly a year and was on arimidex for a year before that
Hi imlauderas
agree with you about sleep i just wish for 1 night i could go all the way through unitl about 9 in the morning and not 2 as you say dont know if the tamx or stress. The Doc gave me some tablets to take half an hour before going to bed, which i did felt a bit sleepy by the time i went upstairs to bed wide awake x
Hi ladies,
I started Tamoxifen on Nov 1st last year. Its reassurring to see I’m not alone, I too am suffering terribly with Tamoxifen aches and pains, combined with a serious lack of sleep! I usually wake up for the first time at about 12.30am then seem to wake constantly every couple of hours throughout the night. I can not remember the last time I got a decent nights sleep, and I can’t even blame it on hot flushes too much!
I have been quite worried about my aches and pains, although my head tells me they’re simply down to the Tamoxifen and Zoladex I’m on. Saw my onc on thurs and he is arranging for me to have a brain scan and bone scan just to 'err on the side of caution.
Take care all,
Kelly
-x-
Thanks ladies. I thought that I was making a fuss. Cramp in toes has disappeared and aches are less since I stopped the tamox on Wednesday. Hot flushes subsided quickly and I’m sleeping well but I think that’s because I’m having radiotherapy at the moment.
I will see what my onc says in 2wks as I feel a bit exposed not taking some treatment or prevention.
I have posted this for new user Babs,
Jo, Facilitator
Hi everyone, havent been on here for a while due to chemo was very ill. Me too…into my second month on tamoxifen and also suffering with hot flushes and palpitation more so at night, wake up in bathes of sweats… but the worsed is my aches and pains. back, hip and my right knee also notice when i drive it get worse on long distances, went to surrey last week from wales…could hardly drive all that way had bad cramp in feet… glad you said about it toffee i thought i was the only one who was suffering, sometime cannot move in the morning. Havent got to see ONC till september. So it looks like i am stuck with them till then. Greenpea let me know if there is any alternatives as wales is the worsed place to live to get new drug as you would have seen on the TV
Love to you all
barbara
x
Hi Toffe
I have been on Tamoxifen for just over 2 years and I too have had joint pains, esp in my feet and knees. I got really depressed about it. It felt like I had turned into an old woman.For over a year now I have been taking Boot’s own brand of glucosamine sulphate and chondrotin, its called “Joint assure” I now have very little problem except a slight stiffness in one knee that prohibits sitting cross-legged or squating. It takes a few weeks to show effect but is worth considering.
I am still plagued with hot sweats, night and day, and for these i have yet to find a solution but there are times when I consider coming off Tamoxifen if it would help get rid of them. Thing is; at 53 I would probably still have them even if I came of Tam.
Hey ho!
Gentle
Hi All
I have just breathed a huge sigh of relief!! I thought that the aches in my lower back ,knees and feet were down to me doing too much exercise at the gym which I have just started back to after surgery for bc. I too am on Tamoxifen (about 5 weeks now ) and had assumed that it was another after effect from the course of chemo that I finished in April.
I am going to see my onc. a week tomorrow at the end of my radiotherapy and will ask him what suppliments ect… I can take to ease the pains.
So glad that I popped into this forum!!!
Daisyc
Nardy,
Bumped this up for you to read. I hope there might be something useful for you.