Tamoxifen

I am a newbie to the site although I had my op. in April 2009 WLE & SNB. I had been looking up info on the NHS Site before.
I start Radiotherapy next week until 7/Aug. (every day except for w/e’s). Its a bit daunting, I must say. But reading all the excellent tips and writing them down now e.g. puting the cream in the fridge, fan for cooling down.
I have had to start taking Tamoxifen tablets - can anyone tell me how long will it be before I start getting hot flushes. When the BC nurse rang, she seemed to think that they would start quite quickly.
I started taking them on 29th May.
I suffer from Rheumatoid Arthritis too, this attacks the joints. I have it quite bad in my hands. So am on other medication to control this.

Perhaps one of you wonderful ladies would be able to answer my questions.

hi whirlwind - me too, I start rads next thurs 9th until aug 10th and have been storing tips!! I have to start the tamoxifen then too - my friend takes it at night so I’ll try that, she finds she has flushes and joint pains esp in the am (pains)so not looking forward to it all…mary x

Hi Kittenkat,
Sorry for the delay in replying didn’t realise that my comments had actually been printed.
I started taking the Tamoxifen on 29th May afer having my op. on April 24th. Have I read your letter right, that you haven’t started yet on the Tamoxifen, did you have different advice to me to start taking it when you start your Rads.
Have you had an op. recently?
Prior to having my op. I was on the mini pill because of my size had to take two tablets every day (no weekly breaks)but I didn’t have a period either, had to stop taking the mini pill on 6th April as advised to do so but I still haven’t seen a period.
Perhaps someone can advise me re: periods and Tamoxifen.
Many thanks.

Hi Whirlwind, I started taking tamoxifen a couple of weeks before I started rads. So that was 1st April and to date… no side effects ! I take it at night with 500mg of evening primrose oil, don’t know if that is what helps…or maybe I’m just lucky …or maybe it’s not working…eeeeekkkk !

Im 45 and premenopausal,had a coil in for the past 4 years which was great as I hadn’t a period in that time. Unfortunately my cancer was 100% oestrogen and progesterone +ve so the coil had to come out ! Have had 3 periods since then very heavy but not sure if that is due to having the coil out or anything to do with the tamoxifen or am I on the change and my body doesn’t know if it is coming or going…lol.

Good luck with your treatment.

Sandra x

Hi Ladies

Relative to you I am an old hand. I had surgery a few weeks after I turned 39, in May 08, then chemo then 30 rads. I started Tamoxifen in Oct last year. I found at first that I felt sick about 1/2 hour after I took them, so I make sure I take it when I get into bed now rather than just before.

Like a lot of ladies on here, I have found that I have different side effects on different brands, and I haven’t yet worked out which brand suits me best (the reason is that they put different fillers in with the active ingredients, which affect us all differently)

Not everyone gets all side effects listed in patient information leaflet, but the worst for me have been hot flushes (worse on CP Pharmaceuticals), night time leg cramps (worse on Generics) and weight gain (Nolvadex) and headaches/dizzy spells. It’s pretty horrid but better than cancer,eh?

I believe that joint problems are far less common with Tamoxifen than with aromatose inhibitors like Arimidex.

Not sure if that helps! I haven’t had a period since my first chemo.

Take care

Kinden
x

Hi girls
Thought I’d say a quick hello. Took first tamoxifen last night and have appointment with rads doc next Tuesday. Feeling a bit nervous about it all. Was dx 26 May, WLE and SNB on 10 June. Node neg and HER2 neg (after FISH test). Hoping not to experienceSE’s from tamoxifen. Bit worried about rads but sure it will be ok. Let me know how you get on?

alex
x

hi whirlwind - how are you doing then with the rads? Had my first one today, so far so good! Yes my oncologist told me to start them at the same time as rads, 3wks after last chemo - had wle and node clearance 28th jan…I’m starting them this weekend as I have had to come off my prozac that I’ve been on for pmt as they don’t go well with the tamoxifen. Alex - rad session was just like having an xray but a bit longer - drinking plenty now as recommended…mary x

Hi Kittenkat & Alexamay
Think I have posted yr. reply under a different thread!!!
Well 5 down and 10 to go plus ? booster sessions. I say ? because when I had my first consultation the nurse didn’t think I would have all 7 that are on my treatment plan.
Basically you have to put your life on hold - for me its been relatively a short while unlike other ladies.
My breast seems okay at moment, just putting on the aqueous cream like they suggested morning and evening. I get tired but that might be due to the fact of the travelling and waiting.
Let me know how you get on Kittenkat/ Alexamay. What treatment plan are you ladies on?
Kittenkat- I guess you started the Tamoxifen later due to Chemo.
Alexamay- I had same results as yours my removal was 8mm what was yours. They may give you an option to have rads every day or M.W.F and then the following week Tu, Th. I think if you are older you may be offered the second option. What is SE’s??
Best regards,
Whirlwind

SE is Side Effects.

Hope it’s going well for you Whirlwind.

Hi ladies
Am now one week into tamoxifen and am fine. Had 4 day headache at the start but that’s gone now, and having night sweats but had those for ages anyway.
My history: dx 26 may, 18mm IDC, ER+, HER2 neg (finally), had surgery 10 June - lumpectory WLE, SNB. Am node negative. Treatment plan 16 rad sessions.
They wanted to start rads beginning of August (to fulfil their aim of starting within 8 weeks of surfery) but I have a holiday booked the second week in August so put off rads till after that.
I feel very lucky but still worry!
Whirlwind - they must have found yours really early! 8mm is tiny. Very good news though.
Hi Carole and Kittencat. I never get over the number of brilliant people on the forum. Its been a godsend.
alex
xx

oh dear - repeating myself - apologies ladies.
don’t blame it on the sunshine
don’t blame it on the moonlight
don’t blame it on the good times
blame it on the BC

groan

alex
xx

Hi alexa - that’s great news that you are managing the tamoxifen - well done !
I have just finished my 15 rads (similar dx to yours 24mm invasive ductal intermixed with intermediate DCIS
ER+ but don’t know HER status…surgery 18 May WLE and SNB - clear nodes) I am in a big quandary about tamoxifen though (am seeing nice bcn next week to discuss) as I have a long history of OCD and really am concerned about the delicate balance of my mental health -I feel I am so carefully balanced on the edge of managing and not that I don’t want to risk tipping myself over - it;s really a question of weighing up the risks of recurrence against managing to carry on as normally as possible. I sound like a complete barking person -am not,honest !

Hi All,
Thanks Carole for letting me know what SE was all about.
Well I am meant to be having 15 rads (have done 9) but had a review today and the nurse tells me that I may be having 10 booster sessions.
So thats a complete week longer than I was originally told.
She also tells me that as I am big busted may have probs. with my skin underneath my boob. She says that if the aqueous cream doesn’t work they have something else that they can give me. No, I didn’t ask what it was, should have, could have started putting it on now.
I am definitely pinker, and as there is a white bit (border) at the top the nurses are very pleased as they know that the radio therapy is going exactly where it is meant to.
What do they do when they get to the booster stage? Can anyone let me know, something about a rectangle where the lump was and photos at the first stage - does one have radio therapy then as well or is it just all planning.
Alexamay - Lucky you being able to have a holiday. Interesting point, trying to start rads within 8 weeks of surgery - I wish they had with me I would possibly have been another week down the line. I think I got delayed due to the consultant herself going on holiday.
All the best,
Let us know how you all get on.
Whirlwind

hi Whirlwind, how you getting on with the tamoxifen? I’m still waiting for the side effects to kick in, just as well haven’t been holding my breath…

Re your rads, I only had a straight 15 but am a sizeable 40e and had no problems at all, tho it was a bit weird when my nipple peeled off,a bit snake like ! I was only slapping on the aqueous cream too, think it’s down to luck if your skin hold out or not, so wishing you lots of it…

Sandra x

hi whirlwind - I’m having 23 sessions - 15 to whole boob and then 8 boosters - I asked about the boosters and they told me its to the scar/lump area itself and is delivered with a long pointer radio thingy and a bit quicker - prob just the one zap whereas I have 2 zaps, one from right and one from left - had node clearance so no axilla zapping, had no7 today…pink and a few shooting pains just after - odd - went after an hour or so…mary x

Mary i didn’t have node clearance and i had 1/4 involved. told i can have them removed later or have them zapped with radiotherapy instead. I wonder if they will do that at the same time as my 25 radiotherapy or if it will be done at a diffeent time. I’m concerned radiotherapy won’t be as affective as clearance. need to get more information. any advice on radiotherapy will be greatly recieved

Luv Pauline xxx

my first bc was node neg following wle and snb which showed 0/4 nodes so didnt need rads to auxilla i had 20 to boob and 5 targetted one to scar… also took tamoxifen for 3 years as pre menopausal and sandra i got mirena coil inserted 6 months after diagnosis even though i was 100% hormone positive too as the hormone released from the mirena is a tiny amount and its actually got protective properties for the lining of the womb which can become cancerous as a side effect of the tamoxifen… BS, ONC and gynea were all quite happy with this.

as for SEs i only got occassional hot flushes… more at the start but they settled down and only maybe got at most about 1 or 2 a week… havent taken it for 4 weeks and dont notice any difference in how many hot flushes iv had.

my main SEs were drying out of my bod… constipation, dry mouth, dry scalp, dry itchy skin around my scar but these are all easy resolved with cremas, gels, shampoo and laxatives.

unfortunately i got a new bc dx in may this time its triple negative so completely unrelated to first one and need chemo hence have to stop tamox until chemo is over.

lulu x

Hi all,
Not sure where my reply yesterday went to - but its not here.
I am 10 down out of 15 rads. Have got 10 Boosters afterwards.
The Tamoxifen isn’t being too much of a problem except that I take it when I normally get back from the hospital each day. Not the same time either but within an hour.
After a few hours I just experience these very small flushes. But nothing compared to what I have read from other ladies’ letters on here.
Have only been on the tablets since May 29th. So early days in all.
Will be glad when the hospital trips have finished as it is nearly and hour each way and then the waiting…
On the upside you do meet nice lovely people from all over the place.
At the Hospitals and on the Forums.
Keep in touch all…
Whirlwind

Glad you are doing ok with the tamoxifen Whirlwind.

Gosh Lulu, wish i had your onc, I loved my mirena coil,no periods for four years ! However,as soon as I had my diagnosis got told to have it whipped out,am now back to having realy heavy periods, just hoping that they will settle down in a bit. The info leaflet for mirena does state tho that it is not recommended for women with b.c. I wish these medical people would agree on things as we all just trust what we get told and they know best…hmmmmm. It’s a blooming minefield!

Sandra x

hi Pauline - not sure how its done - I’d imagine it would be at the same time??? I’ve had 7 of 23 zaps and so far so good, bit pinky but slapping on the aqueous cream…mary x