Tamoxifen side effects?

Hello Ladies. I am now 42 very close to 43 and was diagnosed at 39. I did not do my full 6 rounds if chemo but did do 8 weeks of radiation and have been on tamoxifen for nearly 3 years. I have also at my own request had a full hysterectomy as I decided that it was the best couse of action for myself. I have never felt better. The only thing i dislike is not being able to have my breast reconstructed. I have not had any long term side effects other than going through menopause. But I chose that with the full knowledge I could not take hormone replacements. Everyone is different my children are in there 20's so I had better choices be able to make than most. I also did not tell anyone. I had a wig made (extremely) expensive but very few people know what I was going through. I love support and give everything to support woman going through this because it's a lonely journey even with the greatest friends. With tamoxife weigh up your options. My mother refused to take it. She got cancer a year after me and she us doing okay. I love my life but am feet scared to tell anyone especially prospective employers. Do what you think us right once you decide on a health plan you cannot have regrets it's to late to change. Get all the information research and DO NOT get pushed into anything by oncologists yes they are the doctors but it's your life. Do what us best for your wellbeing. You are the one going through this. Do not let others make it about them. They live cherish and honor you but YOUR DRIVING

Hi Lovely Ladies,

I have been taking Tamoxifen for about a month now and find the moods swings the worse.  The last couple of days I have had pelvic pain and into one of my ovaries.  I will check in with the medical oncologist with my next visit in a week or so. No real hot flushes or major night sweats.  I know someone earlier mentioned Indoplex.  I am taking that as well as Tamoxifen.  I have been seeing a Nautropath and she believes that they can be taken together.  She has read a paper on it and as I understand the Tamoxifen blocks the estrogen receptors and the Indoplex helps metabolise and eliminate the estrogen.  I am considering the CYP2D6 gene test to see if I metabolise Tamoxifen.  I don't see the point of taking chemicals if they are not working.

It's such a journey and I guess at the end of the day, I have to find peace with what knowledge I can find.  Thank you all so much for your information.  It is so nice not feel so alone.  Blessings.

Lel

Hi Lovely Ladies,

I have been taking Tamoxifen for about a month now and find the moods swings the worse.  The last couple of days I have had pelvic pain and into one of my ovaries.  I will check in with the medical oncologist with my next visit in a week or so. No real hot flushes or major night sweats.  I know someone earlier mentioned Indoplex.  I am taking that as well as Tamoxifen.  I have been seeing a Nautropath and she believes that they can be taken together.  She has read a paper on it and as I understand the Tamoxifen blocks the estrogen receptors and the Indoplex helps metabolise and eliminate the estrogen.  I am considering the CYP2D6 gene test to see if I metabolise Tamoxifen.  I don't see the point of taking chemicals if they are not working.

It's such a journey and I guess at the end of the day, I have to find peace with what knowledge I can find.  Thank you all so much for your information.  It is so nice not feel so alone.  Blessings.

Lel

Thanks Linda.  I started on Tamoxifen about a week ago and so far so good!  I was getting hot flushes at the end of chemo but they seem to have stopped at the moment....and I haven't really noticed any other symptoms (maybe a bit moody but I'm tired at the moment so it could be that!).

I don't know if the side affects are cummulative or if I would have already felt them, if I was going to get any, by now.

Anyway, I'll keep everyone posted :)

Hi Louise,

I've been on tamoxifen for 18 months after undergoing a mastectomy.

I must say that some days, I feel like I'm in someone else's skin. I have a lot of night sweats that keep me awake and feel very tired during the day. I feel pain in my legs mostly the right one and I am very moody which is not like me at all. Some days i feel very low and that's when I think about stopping the treatment and then I think about my 2 girls. I don't know what to do, my oncologist is telling me that the good of this treament outweigh the sides effects but i don't know.

There is a webside you could check for more info about Tamoxifen here is the address:

http://www.all-natural.com/tamox.html

I wish you and all the ladies all the best with the treatment.

Linda

 

 

Hi Louise

Thanks for replying.

I too have hot flashes. It began if I recall after I finished my chemo end of August but they are getting better.

Would love to hear about how you are getting along with the Tamoxifen. I wish you all the best and remember keep positive!

All the best Louise and if you need to ask anything, Im here.

 

Best regards

 

Julie

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...