Big Scary Tamoxifen

Hi Faithfilly

Sorry to hear that you have been diagnosed with breast cancer. While I don’t have any experience Tamoxifen I noticed that you haven’t had any replies yet so I thought I’d reply to you anyway. This reply should push you back to the top of the discussion.  Hopefully someone will be along shortly with an answer for you.

Best of luck with your treatment.

Best wishes

Daisy53

I’m sure you’ll get some answers but I’ve just moved from tamoxifen onto my long term drug and honestly, having had chemo and radio then tamoxifen I hardly noticed it - a bit hot at night but nothing dreadful.  As they say you will probably get some side effects but no one gets all of them and everyone is different but please try not to be afraid or worry - these drugs are going to help keep us alive too.  I love your picture by the way - it’s like that big shadow when you read up but I’ve found out after I was diagnosed that there are lots of women out there on tamoxifen and other drugs I interact with regularly and I never would have known they had been on this journey if they hadn’t stopped to encourage me - working, raising families, running, going on adventurous holidays once the initial intensive treatment is done… 

It’s different for everyone, I know, but just giving you my own perspective (because that’s the one I have )

Have been on Tamoxifen for the past 6 months & I’ve had not one single side effect so far. Not one! I was absolutely dreading it, having read so many horror stories, but it’s been totally fine for me. I’m 46 and on it for at least the next 5 years too x

Hi I have been on tamoxifen for 3 months now 

Do you know if we get regular blood tests and scans while we are on this drug as I joined a tamoxifen forum and it's seems to be American and the women seem to get a lot of blood tests 

• My oncologist hasn't mentioned anything about it 

I’m not sure. I am in between the Chat on Chemo/Targeted Therapy & haven’t had the Talk about Tamoxifen / Rad yet. So in the dark the mo personally. Soon though. 

Hi SquirrelCalledGerald, it’s great to hear something positive about Tamoxifen. Often we hear about the negative sides of these things but there are people out there like you who have had a positive experience but it’s not often these get posted. I’m due to start tamoxifen later this year when my chemo and radiotherapy have finished. It was scaring me that so many people were experiencing side effects. I know we are all different and I’m hoping that if I have side effects they will be minimal.

Thanks for posting your experience.

Hugs from cuffcake x x x x x

Hello I’m two weeks into Tamoxifen and about to start radiotherapy next week and felt exactly like you, I got myself into a right state reading all the side effects, I was very weepy and panicky for the first few days  - I know it’s very early days for me but so far aside from the odd minor hot do, it seems to be going ok long may it continue. I’m also on 3 lots of heart meds and asthma medication.

I try and remember that there will be a huge amount of women who don’t have any side effects to speak of but they generally don’t come by here or elsewhere online to post their good fortune, hence all the ones we read are less favourable. X

I was actually more frightened about Tamoxifen than a anything else!! I had my surgery on 7 Nov and waited until after Christmas to start taking Tamoxifen as my consultant put the fear of God into me!! I started on Boxing day and can honestly say I've neither been up nor down.  I've just turned 49 and felt I was peri-menopausal anyway before my diagnosis.  I felt a bit weepy and grumpy and up and down emotion wise and was planning to speak to GP about HRT and then got my diagnosis.  Because my BC was hormone fed, I'd to get my coil removed and obv can't get HRT now.  Consultant told me I'd put on "at least a stone in the first few weeks" and I'd have severe mood swings!! 

My weight HAS gone up by a few lbs but think that's due to just starting radiotherapy the last 2 wks and feeling exhausted so not doing much exercise etc. 

Obviously it's still early days for me but Tamoxifen hasn't been anywhere near as bad as I thought it would be

We sound pretty similar - I’m 53 and peri menopausal and had my mastectomy in November. I think it’s fair to say it affects different people in different ways, I’ve been walking 4 miles a day to try and keep my weight at a decent level and I’ve lost 4 pounds in two weeks but I’m expecting that to change when I start my radiotherapy (although I’m planning to walk the 3 mile round trip daily - we’ll see about that though!) Onwards and upwards for us both!

Keep me posted on your progress xx

Well I've 3 days left of my radiotherapy and can honestly say it's been horrible.  But hey,  it's almost done x