The tears are driving me mad

I’ve been on Letrozole since early feb and am lucky to not have noticed any side affects except maybe weight gain. I take a magnesium supplement every day anyway, possibly this helps?

Caz x

I’ve just started letrozole and after four weeks I’m starting to get joint pains. I know it’s a recognised side-effect so I am taking fish oil and anti-inflammatories as has been recommended by some of the people on the forum who are also on these drugs! 

Thanks Dory65.  Mostly I find things aren’t as bad as I fear 😊

Hi @ddon,
sorry to hear you've been through the wringer. Maybe the Tamoxifen won't be as bad as you fear. It was rough at first, and took my body a while to adjust, but now the side effects I experienced have diminished. I started on Feb 20th. I'm hoping I won't get more side effects manifesting the longer I take it. x

I agree with kezmusc saying - I only do this for my family; left to myself it would be a ‘resounding hell no’. I haven’t started tamoxifen yet ( next week apparently) but I am already contemplating the next round of chemo (such a positive person!) and knowing that only for the love of my children would I go through that again. Also, facing lung damage from radiation because I have a lymph gland up on my internal mammary chain and the radiation has to try and cover that because it can’t be surgically removed. Seems like chemo didn’t work too well. 

So many seem to tut in disbelief at the stupidity of women who choose to stop meds.  For those of us who struggle with it, and there's a lot of us, the pain is very real.  And as @kezmusc says - there's no guarantee that we need it and no guarantee that it'll help if we do.  I've been on it now for nearly 2 years and most of that time it's been hell - I'll probably be on it for at least another 8 years.  My onc would give me a break but would prefer not to at this early stage.  The good oil makes the pain manageable but of course, we're not supposed to have that.  I think that I would be very likely to stop if it wasn't for my kids but having them, I will take whatever possibility the meds provide.  
Only you can make the decision as to how you go on but you have to think about it carefully and clearly.  No regrets.

Hi @JacquiP

I sympathise with you lovely. It's been difficult for me to persevere with it and I am not even three years in. I managed the sleep issue by changing brands which also tamed the hot flushes down a bit as well.  The nausea, bone aches and light headedness remain, though not as bad.     Love life..........well, tha's a very sad side effect of all this shit. 
 I run three months on Tamox and one month off.  At the beginning it would wear off quickly and I would have three really good weeks.  Now it's taking nearly the whole month to notice any difference. This time I have extended my break to 6 weeks. There appears to be no problem side effects with me just stopping it regularly.  Sometimes the flushes will increase for a couple of days as my body tries to work out what the heck I am doing to it now.  
My onc knows what I am doing and agrees, it's better than not doing anything.  Not that I think they really care once you walk out the door. 
It's a difficult call for a maybe.  I have tried to explain this to my husband but I don't think it gets through that it's no guarantee anyway. 
. To be very honest the only reason I continue is because of my family at this point.  Left to my own devices it would a resounding hell no. 
Good luck with your decision sweet.  xoxoxo

Hi @JacquiP, I too have rheumatoid arthritis and was put on Tamoxifen.  I found the increased joint pain just way too much to cope with so my onc agreed that stopping it was best for me.  I was peri-menopausal so I had an oophrectomy and, after I've had a knee replacement in August, I'll give Exemestane a go.  If it doesn't work, I'll stop it and try something else.

I've found that being very clear with my medical professionals that quality of life is more important to me than quantity, has resulted in some really good outcomes.  The ortho I saw about my knees wasn't keen to give a 41 year old a replacement but after explaining my position clearly (and looking at the MRI's), he got on board the "Make Jen's life better" train :)  I'd really recommend this approach and if your doc isn't prepared to get on board, see if you there's another one that will!

Hi@Jacquip, 
At the 4 and a half year mark onTamoxifen i asked my oncologist for a change. I had managed the lack of sleep, memory problems etc but ongoing gynae problems and some ups and downs emotionally really got me down. 
He totally agreed a change was warranted and switched me to arimidex which i tolerated much better. Unfortunately due to already having osteoporosis when scanned and lots of joint problems I was taken off all medications earliwr this year. 
I hope you find an alternative that helps you cope better. 
Best wishes
Michele xx

My onc was happy for me to have 2 three month breaks. The first made no difference to my sleeping or libido. During the second, my hair stopped falling out. So we both agreed I would stop the tamoxifen after 7 years of it.