Tamoxifin Buddies wanted!!!

[gocat]

Well done Chipper.
Day 11 here and still no major SE's. I have APS brand so will try to make sure I get that when I renew my prescription. Also TOM date been and gone and no period. Wow I dont miss that, that's for sure lol.
I too (like Sandra) take evening primrose oil capsule so maybe that helps with preventing SE's.

[Guest user]

Well done Chipper ! I remember taking my first tablets and being in a state of constant anticipation waiting for something to happen.......hot flushes...mood swings....head to spin round etc that was in April, am still waiting......

I have made friends with my chemist and make sure I check before I leave that I'm getting the same brand each time, I get 60 at a time (wockhardt)I just take mine at night with 500mg evening primrose oil ,fingers crossed for you.

Sandra x

[Jellylegs]

Hope this helps on brands. My local chemist said he had to have what the warehouse sent him,but he would try to help me if he could. On another thread someone said that TESCO always managed to get her the APS brand. I went into my local Tesco branch and asked for the APS brand and they got it for me the next day no problem.

[chipper]

poor you Alex -which brand did you get this time ? Hooray that it's your final radiotherapy too 🙂
xxx

[alexamay09]

Good for you Chipper. I got given a different brand last week and they are giving me nausea. I had no idea that different brands could make a difference. I would advise if you are having major SE's ask the chemist for a different type next time. The first lot didn't give me any nausea. Flushes much the same (8 weeks in). I am also having bad stiffness in lower back - always been prone to it but it seems worse.
alex
xx

[annalou24]

Well done Chipper. I'll be following your story closely and joining you very soon...
Anna xx

[chipper]

thank you ! feels ok so far, a bit relieved to have taken the first one- they used to glare at me in the kitchen drawer-I have to put a folic acid out for my son every morning and the tamox. sits beside his bottle of pills.(it wouldn't do to mix them up !!)

[Jellylegs]

Fantastic Chipper.Well done.((hugs))
Jellylegs

[dotchas]

Well done chipper...............how does it feel???????

I have no real SEs,hopefully you will be the same!

Love
Dot
x

[chipper]

ok - I took my first tablet !

[chipper]

thanks rachy and gemjunkie - will keep you posted 🙂

[rachy7]

Hi Chipper, so far so good on tamoxifen. I have actually lost a bit of weight on it. i know I hav't been on it long but hope it stays like this as no emotional problems so far with it either. I am jsut taking it one day at a time with the tamoxifen and also considering the other things in my life which cause me stress. Good luck with the tamoxifen.

Rachy xx

[Guest user]

Hi Chipper

Just found this post and see you are going for it - hope its bearable for you.

I am already menopausal for last couple of years - now I know why I had the stiff feet in morning - also made me go to loo in night - was on HRT for a year which really helped the sweats and joint pain and then wham - breast cancer so HRT stopped. The sweats etc have gradually come back in the last few weeks - so when I start tamoxifen (not sure yet) or other drug what can I expect then? I hope the symptoms do not get worse. I am lucky to sleep between 2 - 5 hours at a time and I am sure this makes everything worse - including patience as you never really feel rested. Sorry that all you younger girls have to suffer the symptoms too. I really looked forward to stopping my periods as I used to suffer PMT and unbearable period pains for 4 days a month - don't know what is worse. Hugs Lyn xxx

[chipper]

shenay - I used a silk hanky in my bra to stop rubbing and it made it more comfy..I used aqueous cream throughout,just in the morning and evening and although my skin went very red it was only sore underneath the breast where the skin touches together. At the end of rads the skin broke and it was weepy but bcn gave me excellent Allevyn dressings which protected and absorbed the weepiness- it was better within days.
I will go for tamox..just last minute wobbles - sorry I seem to be making a huge fuss when lots of folk just get on with it ! -plan to take it in the afternoon/evening

[Eliza]

I've been on tamoxifen since mid January and started off with headaches but they had gone by month 3. Like Veggie, I find some SEs come and go, but for me they are annoying rather than anything that makes me feel I need to stop taking it. The most annoying one is the fatigue and needing much more sleep, but some of that may also be after-effects of other treatment and so will improve.

I take it in the morning with my breakfast and have occasional hot flushes during the day, but no nausea at all. I do have night sweats but usually get back to sleep very quickly. I had some joint stiffness at first but was recommended to take glucosamine and that have worked really well for me.

I too have much less patience with people these days!

Chipper, you stand a good chance of not having problems with SEs. We hear more about the problems because those who have few or no side effects don't generally post to say so. The other thing is that it isn't all or nothing. So you don't need to feel that if you start you are committed for 5 years.

Eliza xx

[Guest user]

Hi all,

I think the thing is we are all different in our response to treatment. I had SE's when I started Tam (Nov 2007), then they went away and then they came back again! I think Se's do come and go, depending on a lot of things. If I was overly tired I got more hot flushes. I know there is a lot of nonsense talked about diet and stuff but I think if you have as healthy a diet as you can manage then that helps support your body. Just my thoughts.

Shenay, regarding cream for the rads, you should be given some at the hospital. If not you should use just plain aqueous cream which you should be able to get at the chemists. Put it on about 2 hours before your rads session to let it sink in and start using it at the beginning to protect your skin, don't wait until you have problems. I would also speak to your BCN re claiming the fares back, I'm sure she'll be able to help.

I don't think it matters what time you take Tam but stick to the same time every day if you can. I take mine in the morning and that suits me although it took a bit of juggling to find the right time, I used to take it at night but that was worse for me.

It is a long road isn't it? I was diagnosed in May 2007 and I'm on tam until 2012, it just seems endless. Like you I was depressed a wee while ago which wasn't like me, I rang my bcn as we had a good chat, it helped me understand that I felt low because everything had caught up with me, I'd put all my fears about the cancer coming back on the back burner whilst I was having surgery, chemo, rads and herceptin and I was now facing it all. It does help to talk, keep coming on here if it helps you, we understand. And yes people do assume you're Ok because you're not obviously going through treatment "just" taking one tablet a day. They just don't understand because they are not going through it, hence at least "you're not on chemo" comments! I do feel that I've got less patience with people these days, I'm sure you do too. Big hug for you, good luck with the rads, it shouldn't affect your mood but it might make you feel tired (sorry)

Take care all

Love

Veggie

[Lily200]

Hi,
my friends having zoladex injections seem to be getting on fine although you don't know what is giving you each side effect. There are 9 of us and we are all on slightly different things due to our past histories, age, etc. You can't have tamoxifen if had certain things in the past like clots. I will be switched to Femara and I am concerned that some people say it affects your hair! Crikey I still haven't got it anywhere near as long as it was before chemo so not happy about that one.Hope I am lucky.
Shenay I don't think rads will affect how you feel really. It is a pain in the neck going every day, especially if you have a drive and expensive to park too but nothing touches you, no cannulas, no needles, just a bit scarey when everyone runs out the room and the buzzer goes off. After the first one you know what to expect. Vicky, one of my buddies on here had rads to the ovaries. I think it was about 3 visits in one week. She got terrible diorrhoea after but it menat no more zoldex injections. Shenay on your planning day they will give you a sheet of dates and it will probably start very quickly, depends how busy they are I guess. We have to start 3 weeks after chemo so no break in cover. Chipper have you read the side effects of Bc if it comes back? A tamoxifen tablet is a walk in the park compared to that and you get a 60% less chance of a recurrence.
Tablets at the ready everyone. Here we go
Glug
Lily plus tablet 🙂

[Jellylegs]

Chipper NO!!!! Take the hormone. It could give you some more time with your friends and family.Just enjoy the time we have.I feel we are on a stop watch. Maybe another 3 years then bam!!! Live, love, rock but don't let it take anymore away from us. I hate the thoughts of SE but will fight it.

[chipper]

I do get panicked by the posts talking about side effects ! I really,really hope I don't get them.
I have made my anxieties very clear to my bcn and she has obviously spoken to onc and surgeon so I guess they wouldn't recommend my trying it if it wasn't neccessary (have been looking at the new thread on saying no to hormone therapy) - I guess I have to trust their advice - the benefit I will have is small though- I think I'm just having a wobble about my decision to go for it.

[Guest user]

Does it matter what time u take tax, a lady i met at hydro said it has given her a bladder problems. I will be starting radiation sep 22 and some suggested putting a silk scarf inside my bra after radiation sessions each day, i still dont have cream any suggestions, i also heard i can claim fares back from the hospital, i am on ESA benefit, can anyone advise plse as i have to travel 10 miles by train everday.Thank you Jennar for your quick reply
Shenayxx

[Guest user]

Sandra,

I know - you feel like you are missing something - not that I want SE's but even my occy health said I should be getting SE!!! and she doesn't even work in oncology.

My onc did say that there is a study at Chrisities where if you still having periods on tax they could offer rads on your ovaries!!! I think I might take a look at this. Would still need tax but at least periods would stop. I have had them throughout chemo and rads - thought I would at least get rid of them.

vicky

[Guest user]

Hi
Shenay, sorry your are feeling so low(Iknow the feeling!!)I'm putting it down tonot being able to get a goodnight sleeps without havin SE as well,that I can't seem to see anything positive. I think also its because we are in the "limbo! stage waiting for Rads and don't know what to expect.With all we have been through chemo/ops ect its another treatment, stage,and we don't know what/how we are going to feel.Its like this is my 7th week since my op and no needles have been stuck in me , my 3rd week with no appointments...my calendar is quite empty!! my sense of what has been normality is in disarry!! Have you spoken to your BCN?
And yup! I had another night of staring at the ceiling so tonight is sleeping tab as I'm getting to be a real grouch!!! (really!!)
Regards to the dates of my Rads it was the 1st thing I asked and was told NO!! As I was still "high risk"!! but we have a plan,Hubby is going to try an take me out in April/May : ) so I have something to look forward too and it will just be us two,no family :0)!!

[Guest user]

Hi Vicky, I seem to be in same boat as you..... started tamoxifen April 1st and have had no side effects whatsoever. Can't win can we, we don't want the side effects but then worry when we don't get them does that mean it's not working ! Arrgggghhhhh !
I hadn't had a period for 4 years as had a mirena coil but was advised to have that removed and now have the yukky periods back, hormonal hell in my body at the mo lol.

My onc has advised against zoladex and associated side effects and says tamoxifen will do the job of blocking the oestrogen, she says I might just be one of the "lucky" women who don't suffer badly with menopausal symptoms or they could all kick in later....who knows......oh the joys the joys....

Sandra x

[Guest user]

Hi everyone

I am new, this is my first post, I have been on tamoxifen for 5 weeks and stopped for a week and started again because my family made me feel so bad, i have insomnia badly, side effects include headaches, joint pain, i have ostearthiritis as well. My doctor looked up the SE and said deppression is not on the list, or insomnia he priscribed sleeping pills( false kinda sleep) i will start radiation 22nd of sept( well planning anyway) how long between planning and start? anyone know? I am terrified if i feel depressed now what happens when radiation starts.I am pissed off at the moment as everbody who supported me through two lumpectomy and LN ops have left the party and like i been cured left on my own.I am not enjoying treatment at all. people say its just hitting me and thats why i am depressed, any advice, as when i complain all i get told is at least youre not in chemo.

[Guest user]

Hi Ladies,

Can I join?? I started taking tax in july. However it doesn't seem to be working as still having periods and very nasty ones too!!!. Had no menopausal symptoms at all and think I am going to need the extra jab to get it sorted out. Phoned for an appointment with my onc yesterday so hope to hear soon. Am worried as going back to work soon and not sure how I will cope with whatever they are going to give me extra!!!

Vicky

[Jellylegs]

Day three in the Tamoxifen House

I've woken up with a headache today,apart from that I'm OK
Hope I'm not counting my chickens!

[Jellylegs]

Hiya Mary,come on in babe.

[chipper]

hi Mary ! do join - and glad the rads are all done too xx

[contrarymary]

Can I put in an advance request to join the tamoxifen buddies?

I've just finished rads today (yay) and picked up my APS pack from the hospital pharmacy yesterday (prescription was written in July, but onc didn't want me to start taking until after rads finish). I'm planning to start taking them in October - and am braced for the worst but hoping for the best.

[Lily200]

Hi,
the article was referring to a reserach trial on people who had taken Tamoxifen for over 5 years and relates to about 1000 in the UK. Google the whole article and read it all as I think it will put your mind at rest that it is not applicable to most people being treated.
Jenhar have you asked if it would be possible to delay your rads. You are already on Tamoxifen and they may say that is enough to protect you. You could have planning and start on your return or do the whole lot afterwards. If the machine broke or when there is a bank holiday they tell you to come back later. I had mine over xmas and new year so it was all broken up and they said they take all that into account.
Lily x

[Guest user]

Hi everyone,

I've not been on the site for ages but decided to check out information on Tamoxifen as I've been taking it for a couple of months now. I also have day and night flushes although chemo has brought on an early menopause so that doesn't help!! However, reading through the comments about SE has made me give the biggest sigh of relief ever. I have had awful shoulder and arm pain, especially at night and in the mornings as well as hobbling to the loo in the night like a 90 year old lady. Stairs also need to be negotiated before attempting!! I didn't realise that this joint pain was a side effect of T and I started worrying about bone cancer and having lots of other morbid thoughts. I feel a lot happier now that it is probably just something that needs to be lived with

Did anyone read the article in the paper last week about Tamoxifen possibly causing aggressive secondary cancers? This is also worrying me at the minute too.

[Guest user]

hi there everyone

its such a shame a lot of you are having difficulties on t amoxifen, i too have side effects, but think i will stick with it, cos what is the option? i think worse than any side effects.

i have stiff joints, infact cant bend thumb at all in the night, and it really hurts, come down the stairs like an old lady as well. mega hot flushes and sweats, low moods at times, but at least im living to tell the tale.

hope things imrove for you all, maybe there will soon be another breakthrough in treatment, with less side effects. that would be so good. take care x

[Jellylegs]

Hi Jenhar,I dont see why they can't delay the Rads for you. But I'm no expert. Keep writting it always helps to share and we all understand what you are feeling.

[Guest user]

Hi all,

Jenhar, just google Ladycare and you'll get the website. There is a thread on here somewhere about it as well.

Sorry you're feeling low, I felt like that recently and put it down to the tamoxifen, I was worried enough to ring my BCN and we chatted and I think the problem was everything was catching up with me (I'm over 2 years past diagnosis) yes the treatment does seem endless sometimes doesn't it? Hopefully the SE's will settle and lessen for you soon.

Can they delay your rads so you can go on the holiday?

A big hug for you and for all my fellow Tam buds!

Veggie

[Guest user]

Hi Buddies,
Veggie, very interested in this magnet.Where/how ect I've never seen anything on those magnetic bracelet stalls that you find at events.

Today is my Day10 on tamoxfin,and another night of crap sleep.Had bad news y/day so that hasn't helped my mood ,even lower than I have been.. Been wandering around the house saying "why me!" Sorry feeling very sorry for myself today:( I've had chemo, masectomy with reconstuction and just got my dates through for Radiotherapy and they fall when I should be going on a family trip to Oz!! So yup everyone is going except me...so yes I am feeling sorry for myself but normally I would pull myself out of and put a positive note here.But sorry not today, just feel that its never going to be finished!!
Is this the feelings for next 5 yrs???

[Daisy_do]

Been on Tamoxifen for 3 months and have had headaches (now gone), weight gain, aching joints, fluid retention (on tabs) nausea (on valoids) night sweats, hot flush and fuzzy brain.

There was a turning point recently when I suddenly "woke up" like something lifted and now have more energy and my weight is coming down slowly - still a struggle.

I think that I just learned how to manage the symptoms that I had and my doc was great. I know now what to expect so work within that range.

It is nice to have buddies who understand exactly what your saying and dealing with.

Thank you buds x

[gocat]

Interesting about the ladycare magnet. I tried magnet therapy for arthiritis a few years back but didnt really get much benefit. Might try taping that magnet to my abdomen and see if that helps with mood swings lol. Well a magnet is a magnet isnt it?

Been on Tam for a week now and the main change I have noticed is nasty mood swings the first few days (like PMT). Got a headache today but started antibiotic course 2 days ago for slight infection in my SNB scar so could be that.

[Jellylegs]

Day two in the Tamoxifin house!!

So I took my tablet last thing at night with a cup of tea!!! hope thats O.K. But I had a really good nights sleep and only woke up once BUT that was with a burning hot sweat,even my arms were hot. Is this the norn? Big brother said to much meat is bad for you so I've cut it out completley. I'll try anything to stop the bu... returning

[chipper]

rachy - do join us - I too am very anxious about the possible psychological impact (because of OCD - I think we have talked about this on other threads !)

[Guest user]

Hey everyone,

I've been on Tamoxifen since November 2007. At first I had terrible hot flushes as well, they lasted for about 3 months and then disappeared for 15 months! bizarre. Just recently they are back though, bizarre again.

Have you heard about the ladycare magnet? You wear it in your pants! and it's supposed to help with hot flushes. I got one about a month ago and it has really helped me, I didn't have a hot flush at all yesterday, felt a wee bit warm at night for about 1 minute in all. I like it as well because it's a natural solution and so easy. Worth a look?

Rach, when my hot flushes returned my mood dropped as well (uncharacteristic for me) and I felt really angry but I can honestly say that since wearing the magnet I feel heaps better, I'm getting back into exercising as well which I think has helped. I have no idea how the magnet works and the people who produce it don't know either, they are researching at the moment. I really hope you're OK on Tamoxifen.

Take care all

Veggie

[rachy7]

Hello tamoxifen buddies, Can i join you ? I have only been on tam for 8 days but would like to able to talk to others about it and its side effects? I finished treatment last year and was on arimidex but had such terrible side effects that am now on tamoxifen. What I worry about the most is the psychological side effects as this is the reason I came off the arimidex. I know being on tamoxifen makes a 13% difference to my prognosis so really want to stay on it for five years if possible. I have depression and mood problems anyway and am sensitive to any manipulation of hormones.I am menopausal as had a hysterectomy at 35 so have some symptoms already described. I just don't want them to get any worse. Thanks for reading.

Rach

[Guest user]

Hi Elspeth

I'm only on tamoxifen but I'm with you - hot and cold all the time. I've definitely had weight gain and fluid retention - fingers and ankles are swollen - although I haven't changed my diet.

On the other hand I can't exercise as much because of the joint pain so that may be causiong some of the problems. I'm looking for exercise which isn't weight bearing

Lynn

[Guest user]

Good evening ladies. I thought I'd join you. I've been on Tamoxifen since January. Hot flushes - still get them but they don't seem as nasty as they were towards the end of chemo. My best tip for night time is buy a "Chillow". It's wonderful and helps to keep me cool all night. Such a luxury mid night flush!!
I'd be interested to hear if any of you have noticed any weight gain on Tamoxifen. I've always been quite slim and never really put on weight but have put on a stone and not sure if it's down to the Tamoxifen or the Herceptin (I started them on the same day). My fingers are also swollen and I can't get my rings on...Is this the weight gain or fluid retention..???. So many questions!!! I've sat here all evening taking my cardigan on and off and on and off again. My internal central heating is all over the place!

Good luck everyone!
E 🙂

[Guest user]

Tamoxifen - horrible! I've been on it since February and have tried taking it morning and evening but still get hot flushes all day and night sweats every couple of hours. The rest of the time I get cold flushes and am constantly putting a cardigan on and off/

My feet are really painful after just a short while walking and like others on here I hobble downstairs in the morning. I also get pains in my wrists, knees and shoulder. This means I can't exercise and can't lose the weight I put on during treatment. I'm seeing my oncologist next week to see if there are any alternatives.

Hope your sufferings are less!

Lynn

[Guest user]

I now take tamoxifin at lunch time, when I was taking it first thing, I felt a bit queezy but now take it after my lunch and dont feel so bad

its not stopped the night sweats, flushes and joint pain but hey ho it wont make me stop taking it as I want to live until I am 90!!!

Carol xx

[Guest user]

Hi I've been on tamoxifen since end apr09 I take the tablet in the morning and have hot flushes day and night,have not had good nights sleep in months.They started with the chemo (I'm 41)I wear layers that I can remove,have cotton bedding, have window open all night.have made my students open classroom door even when cold they are very good and don't complain too much to me but that might change in winter!Have got my desk near window in class now.
I also have painful feet in morning going downstairs is nightmare I hobble down them.

[Guest user]

i have been on tamoxifen for one month today, and so far i haven't had any side effects. i went through the menopause years ago, i am 60 so i was nervous. i have another prescription so it is a different brand so hope they are just as good.

[Guest user]

Hi this is day 9 for me on Tamoxifin..... Oh Boy!! How can a wee tablet like that make you feel crap??? Headaches not so bad now just a nagging dull thud, so hopefully thats them subsiding. But yes the hot flushes...wooha!! I don't like it!!! had them whilst on last 3 doses of chemo ( bad enough!) but to carry on and know this pill is the cause(I hope!! I'm toooooo young for menapause...yet again I hope!!!) is bloody ell.My main problem is that I can't sleep get 2 -3 hrs if lucky ; ( I take mine in the morning after breakfast !!
Sorry to hear Carol about your cold, I would say have a Hot Toddy but that would be hell!!!

Jenhar

[alexamay09]

I am thinking of switching from a bedtime dose to a morning one - at the moment I can go most of the day without flushes but they are awful late evening onwards. I wondered if it would be worth having more during the day to get a sleep. Does anyone find that taking it a.m. makes a difference?
alex

[Guest user]

alex, I got a different brand the second prescription and they didnt agree with me, I contacted the chemist and they reordered the aps ones for me and will always try and have them in stock.

night sweats drive me nuts and on top of that I have a really bad cold just now

oh the joys

Carol xx