Tamoxifen Yes or No?

Maybe I can give it to my daughter's cat who is as mad as a meat axe! It sure helps me to chill out.

                                               Tonya xx

I haven't had any weight gain, but I did take up running which is something that I said I would never do! I used the "Couch to 5km" podcast that you can download from iTunes to teach me how to run and now do two runs each week of 5-7km each.  I also play indoor beach volleyball twice each week which is great fun!  I haven't changed my diet in any way and still have my glass of wine regularly and choccies every day to keep me happy.

Insomnia can sometime be a problem if you get hot flushes/night sweats.  I find that if I am unsettled, I take a couple of Panadol and it settles me right down and I sleep with no problems.  Apparently Panadol doesn't stay in your system so you can take it every day if need be (providing you stay within the recommended dose).  Taking it at night was suggested to me by a friend who doesn't have BC but takes them when she can't sleep.  It certainly works for me :)

Depression is not something that I have had trouble with.  I think if you keep active, it helps and coming on here and venting if there are any problems is a great relief!!  We are always here to listen :)  If you do get depressed, make sure that you go to your GP straight away because it is something that can be treated.

Hopefully you won't have any problems taking it at all!

Louise

Thanks Louise, I'm interested to hear any experiences of tamoxifen I can. I've done a lot of reading and thinking about this issue over the last couple of months and I've come to the conclusion that with my cancer - strongly estrogen positive and grade 3 - I can't afford to reject it. However, I want to be as well prepared as possible before I start taking it in a few weeks. I figure that the more I know the better I'll be able to deal with any side-effects. My biggest fears are weight gain (vain I know), insomnia and depression. But I guess I'll just have to see how I go. I want to get as fit and healthy as I can too, beforehand. Hopefully it won't be as bad as I fear. Most things aren't. Take care, Janet. :)

By the way Tonya, my cat is on 10mg of Endep!  We call it his happy pills :) xx

Hi Janet

I'm 44 and have been taking Tamoxifen for about 18months.  The only side effects that I am getting are hot flushes/night sweats and VERY heavy periods.....but this could have been caused by the chemo rather than the Tamoxifen?  Other than that, I don't notice that I am taking it.

I'm with Tonya on this one - after two bouts of BC I am not willing to NOT take it :)

Good luck,

Louise x

In 2003 I had just one 2cm lump and my surgeon said I could choose but thought lumpectomy and full node clearance was the better option for me.At the time,I was horrified about a mastectomy but in hindsight I probably should have had that.Because I had radiation my options for reconstruction are now limited.I had the mastectomy in 2010 so am now lopsided.I wear a prosthesis and I'm sort of ok with it. I don't want any more surgery for the moment but that may change down the track.After 2 bouts of bc,I'm somewhat paranoid about checking my scarline.Have a look at my reply to Janet - has info on the drugs I take to help with Tamoxifen side effects.Kylie,I know just how shocked you must have felt when the doctor said mastectomy.It is such a cruel operation on so many levels.It's hard to come to terms with an altered body image.Hope you are going ok.

                                                 Tonya xx

It's hard to know but I think that Tamoxifen was more tolerable when I was older and through menopause. I still got the side effects but not quite so severe as I did at 47. Hot flushes,sleepless nights and low mood were my side effects.My doctor prescribed me a very low dose antidepressant called Endep 10mg and it really helped with all of the above with no apparent side effects.Lately my blood pressure has crept up a little and I was getting a few more hot flushes(probably the hot weather) so I started a very low dose of Catapres and my hot flushes went. Catapres lowers blood pressure as well as reducing hot flushes.Obviously if you have low bp then this drug might not be appropriate.There are other drugs as well.Gosh I'm sounding like a druggie! But honestly,I am taking such low doses and they are doing the trick.Hot flushes can be debilitating.I have a friend who took Tamoxifen for 5 years and never got one side effect(she was late 5o's at the time)You might be lucky.The other thing I would say is that Genox brand seems to be more tolerable-for me,anyway. I tried another brand once and I got a bad headache and a rash.My friend had the same thing happen to her. As far as I know,my oncologist wants me to stay on Tamoxifen for the 5 years.

                                                Tonya xx

Hi Tonya,

Thanks for your info and I too like Janet would love to know what you took to ease the side effects if i end up with them. Cant imagine what it was like to find cancer the second time. Out of curiosity did they recommend you have a mastectomy first time round and also did you have a double mastectomy or just the one breast removed.

I had no choice while it was non invasive cancer it took up so much of my breast tissue there would have never been anything left. i dont think I will ever forget the surgeon saying that I needed a full mastectomy a few sentences into our consultation. Take care Kylie.xxxx

Hi Tonya, Just wondering whether you think being a bit younger somehow made the tamoxifen worse? Or was it just worse then because you weren't using the other drugs to counteract the side effects? I am 46 and as I've said, I am very uneasy about the taking tamoxifen but I'm also very uneasy about not taking it so I want to do all I can to make it tolerable. Can I ask what the other drugs are that you are taking in case I have those problems? Also are you being advised to switch to AIs afer a couple of years as I have been? I agree they sound worse and I'm going to ask my onc if I can stay on tamoxifen for the full five years instead.

Janet.

If you have to take anti hormone treatment then Tamoxifen is your safest bet.It's been around the longest and has the least side effects compared to the aromitase inhibitors. When I had my first breast cancer in 2003 I was supposed to take Tamoxifen but I was 47 and had terrible side effects.I persevered for 3 months and even tried some of the others but no good. I stopped it ,did my research and decided to take flaxseed,cruciferous veg etc. I was ok for 7 years until cancer came back in the very same spot so had to have a mastectomy.Now I dare not take Tamoxifen.It somewhat agrees with me this time.But I have also armed myself with other drugs which counteract hot flushes and mood swings.They really help and have no side effects . The thing is,you can take products to reduce your eostrogen but you will still have some floating around.Tamoxifen doesn't reduce eostrogen but rather,blocks it from entering cancer cells that are eostrogen +ve. I'v now been on Tamoxifen for over 2 years and haven't had any major problems. If I'm taking a long flight then I stop it for a few weeks and have a medication holiday.I know we are all different and ultimately you have to do what feels right for you but it helps to hear other women's experiences while you are weighing it up.My best wishes to both of you.

                                 Tonya xx