11-02-2018 10:45 PM
28-01-2018 02:57 PM
28-01-2018 02:50 PM
28-01-2018 09:37 AM
Hi first of all, good for you giving yourself permission to decide! Your words could have been written by me in 1997. I hope that gives you a bit of encouragement. I was diagnosed in '95 after 5 (yes five!) Years back and forth to my gp , with a slow growing breast lump. Christmas '94 I was assessed by different Dr who who fast referred me to big hospital. All hell broke loose. Can't remember stage or grade of oestrogen receptive tumour now, but it was in my axillary lymph nodes too. 3 surgeries later and massive post open infection, looked like maggots coming out the insision line, I was banged on antibiotics and Tamoxifen. When the infection cleared I commenced chemotherapy, followed by radiotherapy. Two years later the treatments continued. When I was first diagnosed, I was told Tamoxifen for life. By the time I finished chemo' I was told the guidelines has changed, it would be 10yrs. By the time I ended the radiotherapy it had changed again, to 5yrs of Tamoxifen. Which indeed it was. Side effects were hellish and I don't think I would have carried on taking it much longer. Bone pain. Sweating. Tremor, dry mouth, dry vagina and no sex drive at all. Once off it, all the side effects had disappeared except dry vagina. My husband up and left for a younger woman. He didn't like my breasts and lack of interest in sex. (Yes he was and still is a selfish idiot lol) BUT here I am, 2018 happy, healthy, fit and only ever think about brs cancer when my routine mammogram comes around (next week). I guess what I am saying is, keep positive ...It did not matter what was thrown at me.... Eat healthy. Get exercise. Talk to your friends about what's going on. Don't overwhelm them with too much info, but do share your feelings. I cannot advise you whether to stop or continue tamoxifen, but I can strongly suggest you check the current UK guidance on how long it should be taken for. Also, write to the drug manufacturer team. I did and got a very long questionnaire to complete. They need feedback to continue research. I do feel for you, but be positive. Here's me 20 odd years later, still dry vagina, but that's treated with occasional Vagifem on prescription (oncologist said it was ok) and feeling 100% better about myself. Still got one breast 4" bigger than the other, but I don't care. Written with love to all who are my cancer cohort x sorry for typos hope this makes sense.
22-01-2018 08:48 PM - edited 22-01-2018 08:52 PM
I am on my 9th year of Tamoxifen 20 mg... today i decided to go off of this drug. My body has had enough... bones ache, tingling in hands feet legs and back, swelling of arms and legs..am achy and in pain every day.. major brain fog.. dizziness ,depressed, and no drive or goals.. sex life.. do not have one.. because of the vaginal dryness.my skin is aging faster than it ever has.. (am 52), and emotional, mood swings, hot flashes, insomnia, fatigued!!! and am losing weight ..9 years is enough. I had full chemo and radiation was stage 1b er with fast spreading cancer.. was taking chemo treatments within less than a week. Completed those and then radiation for MANY days.. which i got radiation burn .. my breast area was all green and pus filled, and i warned the radiologist i was burning and they made me come back anyway.. i gave them heads up about it when i first started feeling it wasn't "right".. they continued...i was septic after all that trauma.. as though my body had not had enough torture..so i got pissed off and wnet to my oncologist.. oh , he was not HAPPY with them in radiology, nor was I!!! So i was prescribed an ointment for my burn, as well as antibiotics which burn victims use .. so was real burned.. and sick! IT IS HELL! All of it..... I am grateful i am in remission thus far... I pray for all to be healed whom are going through this .. Now to find out what the withdrawals are going to be. AM staying positive and will fight til i am off completely. Godbless ALL who are battling this cruel disease. <3
02-12-2017 06:01 AM
27-11-2017 11:47 PM
25-11-2017 09:23 AM
24-11-2017 02:01 PM
I finished 10 years five weeks ago. I've definitely been quite moody since, been struggling more than usual to get up in the mornings, and have generally felt quite lethargic - not like me at all. I'd put it down to the change in season, but maybe it's hormonal. I also have a persistent headache which really isn't me.
23-11-2017 07:18 AM
21-11-2017 08:43 PM
I am 60 and completed 5 years of tamoxifen in feb 2015. I was able to wean myself off all meds since that time. Over the past 2 years I have felt worse each day. It is as if my thyroid is not working right. Weight gain, exhaustion, muscle pains, etc. Ya'll know that blah feeling you get & you just can't point your finger to one thing not feeling right. That is me. I am so sick of being sick & tired. Anyone with these type of problems after completing the tamoxifen regiment?
13-11-2017 05:03 PM
Hi my name is jennifer hastie and i had breast cancer in 2010 may, since i had my breast off in november of 2010 i was put on tamoxifen and im still takeing it untill 2020 its been hard get the hot flushes and the ache legs and cramps, but it will stop the cancer comeing back.well done to those who have been taking it.
27-09-2017 01:49 PM
06-09-2017 10:06 PM
I stopped tamoxifen after 7 years 2 months ago. I too am having night sweats and I just feel off most of the time! Not nauseous but kinda light headed and tired. So you are not alone but would like to hear of anyone else having issues!