Just wondering if there is anyone out there who has been on both tamoxifen and then an aromatase inhibitor for a reasonable length of time. I'm due to start tamoxifen soon then my onc wants me to switch to an AI after 2-3 years. The side effects of both sound bad but AIs sound worse. I'm thinking I might prefer to stay on Tamoxifen for the full 5 years. Is anyone in a position to make a comparison?
I found that my imagination was worse than the reality in nearly every stage of my cancer treatments. I ended up asking my oncologist to just give me the bare info I needed, so I wouldn't think too far ahead and get worked up for nothing. I learnt meditation between my first cancer diagnosis in 2002 and my second in 2011 and it made the hugest difference to my happiness and my perception of how bad things were.
Having said that, I've currently got air expanders in to stretch my skin for my recon implants, and they are hurting more than I imagined they would!! I just keep reminding myself that the end result will be worth it. x Jane
Hi jandy
Helen here....I think the ladies do have a good point when they say that sometimes people do blog about the Negative things about the whole cancer journey.
I, for one, are guilty of that.
My only real complaints about Tamoxifin is the hot sweats and lack of sleep but I think that is more to do with the chemo induced menopause rather than the pill itself. I don't think the Tamoxifin brought that on, so much as the chemo - cause I had to have a much longer treatment than normal.
Also Julia makes an excellent point when she says everyone is different. I know I am particularly hormonal sensitive so I may be experiencing more side effects be it from menopause or the Tamoxifin, than other ladies might - no matter what I took! LOL!
But one good thing - which I find amazing - is that I haven't put on any weight. I'm still at the weight I was when I finished chemo (10 kgs lighter than I started) so I'm quite pleased with that - I suppose you could view that as a positive.
However having said all that my 12 month surgeon appt is coming up next week and he's pretty knowledgeable about the hormonal treatment too, so I'm going to ask him if I should change mainly cause I'm so tired from interrupted sleep and it's affecting me - especially when I'm trying to work. I'll let you know what he says.
Take care everyone
Luv Helen
Jandy, I think that is SO true. I found the same with rads, lots of bad stories, but I had no issues and I think people don't mention if they sail through. Does seem everyone is different. Julia, I will be doing my homework before the next oncologist meeting in April so I can have an informed discussion. Cheers
No I don't think the tamoxifen had anything to do with my new tumour. I think it was due to my high eostrogen levels. Then again, I've had radiation and tons of mammograms on that breast, so who knows if they had any effect? I didn't have much trouble on the Tamoxifen, although I did gain weight during the time I was on it. I used to blame the weight gain on the Tamoxifen, but I've lost and gained weight in the 5 years I've been off it, so I guess I'm just eating too much!! I still had regular periods while I took it. In 2009 and 2011, I had polyps form in my uterus (one on each occasion). They were removed and were benign, but I was told they could have been caused by the Tamoxifen. Overall, I found it to be ok. I think the Femara has more side effects, but they aren't too bad either, especially compared to having chemo!! Everything seems cruisy compared to that! When I first had chemo in 2002, it was horrendous; lots of vomiting and ulceration etc. When I had it again in 2011, it was a breeze by comparison. The drugs and anti-nausea stuff had improved tremendously. Good luck and lots of love x Jane
Thanks Jane. Glad things are going well for you. It sounds like you've been through a hell of time and at such a young age too. Hope things continue to improve and it's smooth sailing for you from now on.
How did you find the tamoxifen when you were on it and are you saying that the tamoxifen might have had something to do with the new tumor?
I am 46 and certainly wasn't menopausal before my diagnosis but I think the chemo has brought it on. Still, as nobody can be sure that my periods won't come back I will be starting with tamoxifen. Janet.
Thanks Jane. Glad things are going well for you. It sounds like you've been through a hell of time and at such a young age too. Hope things continue to improve and it's smooth sailing for you from now on.
How did you find the tamoxifen when you were on it and are you saying that the tamoxifen might have had something to do with the new tumor?
I am 46 and certainly wasn't menopausal before my diagnosis but I think the chemo has brought it on. Still, as nobody can be sure that my periods won't come back I will be starting with tamoxifen. Janet.
I was on Tamoxifen for five years from 2002 - 2007 (ages 34-39). After getting a new tumour last year (nine years later) I have been on Femara since January this year. Since I was still pre-menopausal, I got my ovaries removed and then started the Femara. Both my tumours were highly eostrogen sensitive. I have finished with all the hot flushes etc now, and the only annoying side effect from the Femara is stiffness and sore hips. If I keep active and take my fish/krill oil, it doesn't bother me too much. I had a double reconstruction using my lat-dorsi muscles 5 weeks ago, and overall, I feel pretty good. I'm 45 years old now. x Jane
