Tamoxifen side effects?

Thanks for the reply Julie (and others !)

I am going to see my oncologist tomorrow afternoon so will be sure to ask some questions and get as much info as I can.  I have been getting hot flushes already (I assume from the chemo) so I know what they are like - although for the last week they seem to have subsided again!!

I know that everyone is different and my experience with Tamoxifen may not be the same as anyone elses but I will try to put my experiences up here in a few months so that others can read how it has affected me too :)

Louise

 

Hi Louise

My name is Julie and I am 47 years old and I too have begun taking Tamoxifen....I started mid November and so far so good....I'm not experiencing any side effects from the tablets

I make sure that I eat well and exercise! I think this is the key to keep fit and positive mind!

I feel everyone is an individual. It's good reading information but like I said, we are all different and everyone's bodies reacts different to drugs.

I hope you do well with treatment and keep us posted on how you are going

 

Good Luck

 

Julie

Hi Belinda,

Thanks so much for that response. It was really interesting to read. The way Tamoxifen has been explained to me is that it is normal to still get your periods as it is not meant to stop the oestrogen production, Tamoxifen is supposed to just stop the oestrogen getting to the cancer cells and, incidentally, other cells in your body. I read on the internet somewhere that it does sometimes mean that your body produces more oestrogen as it thinks you aren't producing enough. So I think it is normal for us to have oestrogen in our bodies with Tamoxifen it is just inhibiting it from helping any stray cancer cells from growing. I am a little confused though and am really glad that you gave me that information as I am seeing my oncologist in a couple of weeks and will make sure that I definitely ask about it more. When I started taking it, I don't think I asked enough questions, I was still very much in the shock phase and I am just starting to work through it all now. I do find the whole Tamoxifen thing very confusing.

So you have decided on the oophrectomy (is that the right word?). I read a study that showed that the side effects as in the menopausal effects of an oophrectomy are not as full on as chemical menopause (Zoladex) so you may find that some of the menopausal symptoms you have been having lessen a little which would be good.

Anyway, do you mind if I ask who your oncologist is? I am really interested in knowing more about the doctors in this field as I only really know of my medical team and I know there are lots of second opinions to be had.

Thanks heaps.

 

Sara

My oncologist said as younger women have such resistant ovaries in his experience Tamoxifen often doesn't work effectively in women in my age group (which I assume would be the 35 and under age group? The group who it is designed for...)

He explained as we (women under 35) have so many hormones pulsing about and our ovaries are in full on baby production mode... trying to suppress the hormones is very difficult and he said he felt Tamoxifen didn't work for around 50% of women in my age group due to either the hormone thing or the CYP2D6 problem....

After 4 months on Tamoxifen I had estrogen levels of 1800 and was still ovulating & menstrating...that being said however,.. I have very high levels of Estrogen naturally, higher than most women and he told me from the start he felt I would be very hard to suppres my hormones with drugs and that he thought I was best to go for the surgery...He was also surprised that even the Zoladex took 4 months and I am still ovulating! That's why he thinks that even the Zoladex may not even suppress everything effectively....

All that being said...other women have said to me that they have still had periods, and no other menopausal symptoms on Tamoxifen and there oncologists haven't been worried that it isn't working so I asked my Gp "how do you know if the Tamoxifen is wotking or not" he didn't know....and my oncologist said that you shouldn't be menstrating on it...so I don't know really...knowing how Tamoxifen works (blocks the estrogen receptors in the breast tissue) I am wondering if you can still be menstraing and the Tamoxifen is still working? The radiation oncologist even said that even if I had high levels of estrogen in my blood it didn't mean that the Tamoxifen wasn't working... so who knows! if the experts can't agreee on it, what hope do the rest of us have! I guess it comes down to how much you trust your oncologist and their knowledge of what they are doing......there are plenty of people out there who aren't good at their jobs...Doctors included...

Hi Belinda,

When you say you were 'in the group of women it doesn't work for', what do you mean, exactly? Are you talking about the side effects? Or did you get that CYP2D6 genetic test done?

I would love to know more. 

Thanks,

Sara

I went on Tamoxifen for 4 months and I was in the group of women it doesn't work for...I am kind of glad I did';t stay on it though...these are the side effects I had

Headaches

anxiety (also possibly related to procesing cancer stuff post treatment)

depression (as above)

Achy legs (especially on the side with varicose veins)

Fuzzy head

I am now on Zoladex injections and the only real thing I have noticed apart from the long list of menopause symptoms is that i have gained a little weight but that can be from the menopause it self! I am soooo over all the drugs I am going for the surgery to have my ovaries out and there is a possible alternative to Tamoxifen called DIM or Indolplex...although no studies have shown it to be effective at all but in theory it MAY be effective I wasn't willing to stake my life on it personally and lets face it, that's what we're doing...What I found helpful was getting them to caluclate the differences in treatment options, ie with and without hormone therapy to see what kind of difference it will make...for me no hormone therapy at all meant a 30% reductionin my survival rate so I wasn't willing to try a herb that wasn't proven to work...there is just too much at stake...There is also another herb that they say may work but again I wasn't willing to chance it...I am all for herbal and alternative medicines but I also have 3 kids and don't want to play with my life like that either...Once I get my ovaries out I think I will be taking indolplex instead of aromatase inhibitors though, as once your ovaries are out I figure that's getting the estrogen pretty darn low anyways..... Hope that's helpful :O) 

I went on Tamoxifen for 4 months and I was in the group of women it doesn't work for...I am kind of glad I did';t stay on it though...these are the side effects I had

Headaches

anxiety (also possibly related to procesing cancer stuff post treatment)

depression (as above)

Achy legs (especially on the side with varicose veins)

Fuzzy head

I am now on Zoladex injections and the only real thing I have noticed apart from the long list of menopause symptoms is that i have gained a little weight but that can be from the menopause it self! I am soooo over all the drugs I am going for the surgery to have my ovaries out and there is a possible alternative to Tamoxifen called DIM or Indolplex...although no studies have shown it to be effective at all but in theory it MAY be effective I wasn't willing to stake my life on it personally and lets face it, that's what we're doing...What I found helpful was getting them to caluclate the differences in treatment options, ie with and without hormone therapy to see what kind of difference it will make...for me no hormone therapy at all meant a 30% reductionin my survival rate so I wasn't willing to try a herb that wasn't proven to work...there is just too much at stake...There is also another herb that they say may work but again I wasn't willing to chance it...I am all for herbal and alternative medicines but I also have 3 kids and don't want to play with my life like that either...Once I get my ovaries out I think I will be taking indolplex instead of aromatase inhibitors though, as once your ovaries are out I figure that's getting the estrogen pretty darn low anyways..... Hope that's helpful :O) 

Hi Louise,

I have been on Tamoxifen for nearly 2 years and have not had any major side affects, just small anoying ones like - headaches, dizziness and nausea. It's not constant but its noticable and I have noticed that my finger tips go numb every now and then but not sure if thats a Tamoxifen thing or not. I hope this bit of info helps.

So you start chemo next month? I wish you all the best and hope it goes as smoothly as chemo can.

Tasha xx

Hi Louise,

I have been on Tamoxifen for nearly 2 years and have not had any major side affects, just small anoying ones like - headaches, dizziness and nausea. It's not constant but its noticable and I have noticed that my finger tips go numb every now and then but not sure if thats a Tamoxifen thing or not. I hope this bit of info helps.

So you start chemo next month? I wish you all the best and hope it goes as smoothly as chemo can.

Tasha xx