Hi all,Tamoxifen and I are really not getting along very well after four months. It hates me and I hate it right back. Hot hot hot, bone aches, brain fog etc some days I can't even hold a proper conversation. Anyhoo, I decided to take two weeks holiday from it over xmas and new year (with my dr's somewhat reluctant blessing). I think she's trying to prove that Tamoxifen doesn't mess with your brain. Well guess what?????????? Day four of being off it and feeling fantastic. Woohoo. Even though it's a short break I am going to totally enjoy it!!!

Thinking of going off my Tamoxifen for a fortnight after new year so I can have my brain back to do our long overdue tax. It doesn't help that windows 10 and office seem to have changed everything around again. Too many bells and whistles for me. Why can't they make the extras optional and just leave us old stagers with the basic stuff? I will be getting some much needed exercise to drop a few kgs at the same time as it only goes one way on Tamoxifen and thats ON.

@Joannie I was on rimidex for just over a year, the joint pain was the worst part of it, I never had any problems on tamoxifen for 4yrs but the difference was I was pre menopausal then. My Oncologist switched me to Aromasin this year as sometimes a slight variation in meds can be better, its actually the same lol. Thing is I actually only have panadol osteo now maybe once a week, thats it which is incredible. Apart from joint pain the medication doesnt cause other symptoms for me. I was getting hot flushes before the meds being thrown into menopause unnaturally, it doesnt change on or off the medication. I attribute the rest of my stuff to treatment and I think having trialed off the meds for 6 weeks showed me that it purely was only the joint pain. As Ive had a recurrence already, im sticking to it, I actually dont think about it much now. I think being well enough which has taken 2.5yrs to rehabilitate I am finally ready for full time work up from my 3 days reduced capacity and into a new School and out of a toxic environment. xx M

Hi there. Have been on Tamoxifem for over 12 mths now. Have Met B C that has gone to the bones. I find that taking it at night is better as some of the side effects are experienced when you sleep. I get the sweats, bone pain etc, but I am still on Targin as unfortunately other things don't quite cut it for pain relief. Had a Spinal fusion and knee replacement within a couple of months of each other. There are other hormone meds that might suit you better, I was on another for 2 months but changed and this is better (but not good). This was of small comfort but was told that you find a "new Normal". Sort of agree...damn.

@Brenda5 a few days wouldn't help to be honest, the Oncologist said it takes a good 6 weeks off the medication to get a true evaluation. Mind you I noticed within 2 weeks, but it did at least take that long, that was off Arimidex. x

Happy new year everybody. Last day of my Tamoxifen holiday. Bugger! . Bone aches are still there but have eased a tremendous amount. Iguess it would take a bit longer drug free for that to sort itself out properly. Hot flushes, still there but less intense. Thankyou Chemo. Grrr. No mood swings or tears either.Love life much improved as well YAY! (OK You probably didin't need to know that bit.) I seriously feel pretty much my normal self again. However it is most definitely this drug causing the brain malfunction. Have had zero issues since day 4 of being off it. Even managed to kick everyones butt in trivia last night and that was after a bottle of wine lol. Not sure what to do about this. Change drugs? My other option apparently is Zoladex and Exemestane. Hysterectomy? Say "bugger it" and stop taking drug, feel normal and hope and pray it doesn't come back. (probably not the smartest idea but it's a thought).

Decided to have a holiday from Tamoxifen over Christmas

28 Replies

RoslynT
Member
8 years ago
Hi what I can say is I had a hysterectomy leaving my ovaries back 8 years ago. Currently having radiotherapy, and once finished start on the Tamoxifen for 5 years as they cannot be sure if I have gone through menopause, I will then move on to another drug for a further 5 years and I had no idea of these type of side effects, the oncologist only said weight gain!!!
this really is a roller coaster :-(
primek
Member
8 years ago
@"Bon Bon" If you have your ovaries out they would most likely swap you over to an aramatose inhibitor lie letrozole.
kezmusc
Member
8 years ago
Thanks @Brenda5. I have been taking calcium, magnesium, d3 and fish since I started the Tamoxifen originally. I'll throw in the Vit c as well and see what that does. Not sure @"Bon Bon" I'll have to ask at my next appointment maybe I still have to go on another sort of drug.
Bon_Bon
Member
8 years ago
So if you have hysterectomy including ovaries out can you stop taking Tamoxifen??
Brenda5
Member
8 years ago
I take Vita D3 with calcium, High dose Magnesium, Vitamin C and a ginger capsule. I avoid stress. The world won't turn to dust without your input so look after you first. I think the Vitamin C helped a lot with my moods but sometimes it doesnt cut it so I turn into a hermit on those days. They do pass and you think you are fine but every so often out of the blue the moods hit again. I cannot take antidepressants so I just have to live with it.
Bon_Bon
Member
8 years ago
Hi Kezmusc
I was on it for just a few weeks and couldn't stop crying so i took a break, just about to try it again
lgray3911
Member
8 years ago
@kezmusc I have opted for the Zoladex and exemestane option with the plan of removing ovaries in the near future. Oncologist doesn’t think full hysterectomy will be necessary but is leaving that discussion for me to have with the gyno specialist. I started today with my first injection and tablet so will let you know what weird and wonderful side effects I have. Chemo has already thrown me into menopause (am only but 38) so cant imagine it being much different to what I am experiencing now aka flushes, sweats, Granny fanny etc......
kezmusc
Member
8 years ago
Thanks @melclarity. Yes, I am keen for the added % as well believe me. It just hates me.....guess that's what I get for having not too terrible a run on the rest of the treatment lol. I'll give it another crack and see what happens. XX
melclarity
Member
8 years ago
I agree it's so individual and only a choice you can make. After my trial off the drugs, I went back on it and then he switched me. They are all pretty similar but can vary in symptoms, something could be better. My last visit I'd been on Aromasin the change for about 6 months, he gave me the option of stopping altogether if I wish if side effects are too much. I'll be honest, they are crap, but Im used to it now and I like the added % of protection I get. I took Tamoxifen for 4yrs and still had a recurrence, so there's no crystal ball unfortunately. I also agree if your quality of life is absolutely hammered then you have to weigh it up. xx
Anonymous
Not applicable
8 years ago
Happy new year @kezmusc, the hard part is that only you can make those decisions. I was almost relieved a. When my doctor said I could take a Tamoxifen holiday while I had an LD reconstruction and b. Endometrial Hyperplasia meant that I had to give it up or risk uterine cancer. I remember the decision being very difficult. At least you know that there are options. All the best. I just wish there were a few guarantees with all of the treatment. Quality of life is my guiding principle these days. If it doesn’t improve my well-being, I don’t do it. x