Do you have hot flushes?

[danielafederic]

Hello there sorry to barge in, I checked on the cancer research website where they specify that people with breast cancer should not take black cohosh... It doesn't say why, but I guess it's the same reasons we cannot take HRT... Hot flushes suck, I know very well, I get them often and sometimes in the middle of meetings which is really embarrassing, but they are very welcome as about a year after diagnosis my periods were back, and it took oncologists another year to finally "suppress" my ovaries! This, considering my cancer was 8/8 hormone positively, puts hot flushes and loss of bone density into perspective 😊

[kbmd]

Black cohosh was suggested to me and so far it's worked.  I mainly had night sweats which were horrendous but luckily no real problem with hot flashes during the day.  The brand recommended by my naturopath is Vitanica and available on Amazon.  I take it morning and night with the Tamoxifen.  Good luck-

[stellam]

Hi everyone, I'm nearly 6 years post diagnosis and still taking Tamoxifen... I was diagnosed with BC at the age of 42 and had the works, quadrantdectomy, chemo, rads.
I've suffered with the most horrendous hot flashes and I can honestly say without doubt the worst part of my BC journey! I definately found a huge difference with the different brands Teva beung the best and Wickhardt the worst.
Over the past 6 months or so they have dwindled to the point where I may have a few mild flashes but nothing more. Apparently a medically induced menapause is more severe but shorter lived, bearing in mind they can last up to 17yrs but in general last for approx 10 years, mine has been just over 5 years now.
I also remember my oncologist telling me that the more severe your side affects are from taking Tamoxifen, the more effective the pills are. So in a strange way I was always relieved that I did suffer so badly.
I hope this makes sense and just wanted to wish all of you ladies the very best with your BC journeys.
Big hugs x

[875020079]

Hi all

I was premenopausal until I was diagnosed (I am 48) and hot flushes for me started with chemo. My oncologist said these were caused by the chemo messing with my ovaries and not necessarily a sign that they had stopped working, but I've now finished the chemo and started Zoladex injections and Exemestane tablets, so that will certainly induce menopause within 21 days or so, what joy.
I am having massive temperature swings quite frequently, I am taking EPO 1000mg twice a day but it doesn't seem to be helping. In terms of exercise I can't run as I have back problems and anyway I start work at 07:00 daily and am also going through radiotherapy right now so am pretty exhausted (terrible insomniac as well so that doesn't help). Maybe I'll give the Sage a try.

J x

[samjoesma]

Hi all, I had a single mastectomy in April 2012. When I went on Tamoxifen I was advised to take Sage (Healthspan online) tablets to counteract hot flushes which I was terrified of having.  Apparently they have been tested by Christies and are OK to take with tamoxifen.   Anyway I took them and I have never had a hot flush !   So - do they work ?  or wouldn't I have had any without them. Who knows but they are certainly worth a try.  All the best to everyone undergoing treatment of any kind.

[Dorsetgirl]

Hi, a tip from someone who has Exemestane and Ooperectomy induced hot flushes, I have resorted to having 2 x single duvets on the bed. That way my husband can sleep wrapped up like a cocoon in the winter ewhile I throw the duvet off, stick my legs out, either side, one side, whatever. He doesn't get disturbed and I don't feel trapped under a furnace of a duvet cover! Hope that helps..

[SB]

Dear Peartree,

I'm really glad somone else could relate!  For ages (over 15 years now) - that's how I always felt.  I was in my early thirties when I realised that the day I did not excercise would be a nightmare!  I needed to break out a good sweat - running 10K a day would do it for me.  This would have me very calm during the day and no hot flushes day or night.  So things did not change when I started Tam six months ago.  Basically that's how I've always been.  Either I excercise in the morning or I feel misrable and crancky all day and I end up drenched in sweat at night!  The problem is that keeping the same level of acitvity does not work in the long run!  One has to keep upping the frequency and itensity of the exercise routine.  Running (longer and faster) + weight training.  I guess that's the price one has to pay for being very fit! 

We are not crazy after all 🙂  We are not imagining things! I wish you good luck and keep up the good work.

[Peartree]

The comment by SB was really interesting as I found the same thing, except I would have extreme nausea in the afternoon that my onc and I worked out was a 'cold flash' but basically the same. I discovered that running over 12km was the Magic spot as where my symptoms dissapeared. I was lucky to be for before but normal amounts of exercise didn't work for me. I assume that for some women who were unfit, a small amount of exercise may work but for fitter women you may need to play around with tracking your symptoms/ exercise type to see what works for you. Like you SB I figure it has to do with body temperature control and suspect it's linked to serotonin levels which I speculate may be why low dose SSRI's work for some people. Would love it if anyone knows why!

[Wendyy]

Thanks for that Beryl. I will try increasing my dosage and report back.

[Matty2]

Bought the Evening Primrose Oil today. Shop recommended 3 a day (I will take 2 to start with) of 1000mg.

Will post progress

Beryl

[Wendyy]

Hi Matty

My onc suggested evening primrose but as I've been taking them for about 5 years and still having flushes I wonder if I'm taking the correct strength. I take 1000mg daily. What dose did you take? Or anyone else who's had success on EP.

[Matty2]

When I had a normal menopause i found Evening Primrose Oil capsules lessened the effect,

I now have really tropical + nights - still in summer nightwear etc and am going to try them again, now I have checked it's OK with consultant. Will let you all know!

B

[Wendyy]

Hi Bsal no tips I'm afraid but I can empathise with the flushes and fatigue. I started Tamoxifen in October and must have saved a fortune on energy bills this winter. My woolly jumpers have not come out of the wardrobe this winter. So am looking forward to spending some of the money we've saved on new thin natural fibre clothes.

[Bsal]

It's so nice to realise I'm not alone - I started tamoxifen at the end of August and the flushes have got worse as time goes on. I live in Scotland, have switched off my central heating in the bedroom and have just put a 4.5 tog summer quilt on the bed, even though it's been snowing! The bedrooms is so cold and still the flushes come, my husband says it's like sleeping in a furness. I'm awake 3 or 4 times a night trying to cool down, my entire body feels like its on fire, but I'm not sweating, so not having to change clothes or bed sheets. Stoping caffeine and alcohol has helped. I've gone back to work just before Christmas but now starting to struggle with feeling so tired, so if anyone has any tips or ideas, please let me know - I will be very, very grateful for anything that works

[katzygirl]

Hi Madkiki, I was already taking Propranalol (beta blocker) before I was diagnosed my doc had prescribed them to stop migraines. They are also prescribed for blood pressure, I have been on tamoxifen for over a year now and I don't get hot flushes which I think may be because of the tablets I already take. Ask your doc if this is something they can prescribe to help you xx

[ladygrey]

I think we'll all be trying that. xx

[Rara]

Very interesting tips which I will try! Thank you xx

[danielafederic]

Very useful, thanks!

[SB]

Dear ladies,

I posted this twice earlier once as a new topic and once as a reply. Here it is again and I hope you find it helpful.


Dear all,

I am 47 and I've been having hot flushes for as long as I can remember - ever since I was in my early thrities, if my memory serves me right. I would wake up in the middle of the night drenched in sweat when my husband would actually be complaining the room was too cold!

I've tried everything from putting the A/C on the lowest temprature possible to sleeping in my undies. Nothing worked. The only thing that has really worked is excercise. I discovered that if I break out a good sweat early in the day, the dreaded hot flushes do not make their midnight visit and I have a peaceful night. Also not eating anything at all at least two hours before going to bed at night keeps hot flushes at bay. Keeping a well hyderated system helps a lot too.

I don't have a clue why these tricks work and no one seems to know either. I would guess they regulate one's core body temprature.

When I was prescribed Tamoxifen for my BC I thought that would be the end of me! If I already have hot flushes, what would life be like with Tam! My hot flushes have not worsened since I started taking it provided of course that I exercise in the morning, do not eat at least two hours before turning in and drink plenty of water - up to three litres a day.

I hope you find this helpful.

Regards.

[ladygrey]

So nice to find this thread.  I had to go cold turkey off HRT after my lumpectomy.  I'm HER2 and hormone receptor positive with clear margins and no node involvement. I am on the SOLD trial and got randomized onto the short arm which means i get docetaxel and herceptin for the first 3 treatment and FEC only for the last 3.  Had the first one last week and the side effects are pretty awful.

The hot flashes are unreal and keep me awake at night.  Covers on, covers off etc etc.  Life truly is never going to be the same!!

I also heard that anti-depressants can help with the flashing so I'm going to keep this in mind.  

Onwards we go with all the support around us.

Ade xx

[danielafederic]

Actually, the opposite happened to me, they had gone but I have been having hot flushes this week, not sure why... Tamoxifen with a vengeance?

[Seashell60]

Hi ladies, i dont know whether it's me, the weather or just luck - but my hot flushes that were dominating my life recently have tapered off quite a lot in the past week or so.

I was wondering if it had anything to do with the lower temperatures we have been having this past week or so, or is the Anastrozole just giving me a false sense of security before it comes back with a vengeance?!

So nice not to sit here with my whole body, especially my head, just glistening with sweat! I have had the odd one here and there and they didnt overwhelm me too much either!

But I have been having a recurrence of the back, hip and shoulder pain that went away, so it looks as if one is compensating for the other!! I took some Ibuprofen yesterday for the first time in ages, so it must be bothering me as I dont usually bother.

So if we have another round of heatwave anytime soon, then I can expect to be back to showers, fans and Chillow Pillow again!!

Cheers, Michele x

[madkiki]

Thank you for your reply, I might just do that 🙂

[Jo_BCC]

Hi Madkiki

Do give our helpline team a ring, they may be able to suggest something that you haven't yet tried.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2

Take care,

Jo, Moderator

[madkiki]

Hello, me again, not posted for ages but the hot flushes are as bad as ever (don't think they could possibly get any worse), I could power hell single handedly (hope I get good terms). They,re relentless, all day, all night. I have approx another 16 months on Arimidex which my onc thinks is responsible and says I 'could' give it up now but I just feel I'm so near the 5 yr finishing post I should stick it out. It's just sometimes, like tonight they tip me over the edge. No one could understand just how awful they can be without experiencing them, 'hot flush' sounds like nothing but.... I've tried EVERYTHING but fans all around the house, special sheets etc are the only things that help. Anyone know what I'm talking about? Moan over, I think I'll top my wine glass up ( yes I know that possibly makes them worse but quality of life counts) Madkiki 🙂

[Seashell60]

Hi, I am also carrying extra weight, at least 2 stone prob more! But when i was diagnosed a few years ago with an underactive thyroid that was one of the symptoms of it and i was doing well to keep my weight constant. That is until i was diagnosed with b/c in Oct 2012 and the combination of stress and worry, medications including steroids, etc then chemo and now hormone tablets have put my weight at an all time high!

I did lose weight approx 1.5 stones but that was due to my Chemo no. 4 and 5 whichboth put me in the hospital, once with a throat infection and the second time with MRSA! I lost my appetite and couldn't drink as much so they weighed me at the hospital before i was discharged the 2nd time to make sure i had gained a little back!!!

If only they could see me now!! LOL

Cheers, Michele x

[lisac]

I have just finished chemo and am away to start radiotherapy and tamoxofen, I have gone into menopause and have around 30 hot flashes a day/night. I have put on 2 stone, have no libido suffer from fibromyalgia and now have neuropathy. I already take citalapran and ayitryptaline and none of these help with the added side effects. I am worried about taking tamoxofen and quite frankly have no humour left to carry me through. I am awaiting an appointment with a dietician as I read so many conflicting reports about what foods/alternative medicines to take. What other practical thinks have others tried found helps? PS I stopped smoking as soon as I had surgery over 5 months ago. My husband is also giving me a bit of a hard time due to weight gain and comments on how I need to build up stamina...I wish!

[Seashell60]

I have recently noticed (within maybe the past 2-3 weeks) that i seem to have put on weight especially round the middle. I feel like i have swallowed a big balloon! Perhaps if i was still jabbing myself with the GSF injections from Chemo it would pop and go down!!

And i notice more frequently waking up at all hours sweating as though i have just ran a marathon, but i ts only in the head and neck area and i have to do my hair (i have finally grown an acceptable short haircut i like!) every morning usually rinsed in conditioner as it is dry.

I started Anastrozole back in Sept 2013 and thought i was lucky up until now not having either of these 2 side effects!

Cheers,Michele x

[Tracy1967]

Started tamoxifen at the beginning of April 2014 and so far so good. I don't have hot flushes, mood swings and haven't put on any weight (so far). I think it's a case of having an open mind and seeing how the side effects go XXX

[danielafederic]

I have no side effect whatsoever except for the thickening of the lining of my womb, which is a serious side effect but can be reversed (I am told, by removing my ovaries...). I too started August/September last year, got a couple of months of moods and flushes, then the side effects faded away. Good luck, and remember that tamoxifen is a chemotherapy and prevents hormone positive cancer from developing and therefore prevents recurrence. xxx

[Zuleika]

g star, please don't think that you will automatically get side effects from tamoxifen I've been on it since last September, two months after mx. I have barely any side effects, my periods stopped for a bit, then restarted, but shorter and lighter. So that's no problem. I had some very minor hot flushes, but they never bothered me, were infrequent and have now stopped. I think you only hear the negative stories, people who are ok may not report positive stories, so you may be getting a skewed view.
I keep telling myself thAt it's reducing the risk of recurrence. Good luck
Z

[Fluffyww]

hi gstar- there are some horrid side effects, but that doesn't mean you'll get the side effects. i've been on tamoxifen for 6 months. have night swaets and tiredness, but doable xxx

[danielafederic]

Hi all, still on tamoxifen, no hot flushes, no moods, got my period back... Still checking the lining of my womb but I can say as the breast care nurse said to me, tamoxifen CAN cause all those side effects, but it is not necessarily all of them all the time. Besides, it keeps the risk of recurrence at bay, so... Good luck everyone xxx

[Lucy_BCC]

Hi Gstar and welcome to the BCC forums where you will find support and shared experiences from your fellow users

In addition, our helpliners are on hand with practical and emotional support on 0808 800 6000 and lines are open weekdays 9-5 and Saturdays 10-2 so please feel free to call

Here's a link to the BCC tamoxifen information along with a publication which you can download, I hope you find this helpful:

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/hormone-therapy/...

Best wishes
Lucy BCC

[Gstar]

Hi its my first time posting on here,so a big hello to every body. I had a mastectomy 2 weeks ago, and I am due to start on tamoxifen, I have read some horror stories about side effects and would appreciate advice.

Thanks

gstar

[Bas_B]

HI Everyone,

I started getting hot flushes during chemotherapy and they have continued since.  I've not started the tamoxifen yet but will update after I've taken it for a while.

Interestingly I recently started taking my vitamins again and have taken magnesium at night time.  I've been sleeping better and the hot flush I was getting as soon as I woke up in the morning has stopped. Quite possibly coincidence but something I'll monitor once taking the tamoxifen. 

Jxx

[impatiens]

Hi everyone,

I too have put up with hot flushes since starting on tamoxifen 2 years ago, then I was put on citlopram to try and alleviate them. It's meant for depression and anxiety but they discovered that it also helped with hot flushes. I don't suffer from depression thankfully although couple of friends of mine have had that since taking tamoxifen,and I don't know if it's a coincidence but my hot flushes really did ease up after a couple of weeks of taking it. I wondered if it was because it was winter so i wasn't getting so hot anyway, but this summer we'll see!

[danielafederic]

Hot flushes stopped completely for me, I do not even notice the brand anymore. And I got a period ... So I have just been told my womb's lining is thicker than it should be and will need more investigations... Just wanted to say "stay vigilant".

[Rara]

Hi ladies, I have been on tamoxifen since September last year. Whilst I was on wockhardt the flushes were bearable but since about ten days after starting TEVO the flushes have built to a peak! I am lucky that they aren't too bad at night but that might be because I take my Tamo in the morning. I am a terrible sleeper at the best of times, so am keen to limiti nighttime flushes. Meanwhile, I try to not have caffeine more then once a day in a drink and am trying to limit my chocolate intake. I have also started jogging three times a week,,,, slowly.....!
When I have a hot flush, I sip water and breathe deeply and pray it passes quickly. . . But sometimes it's so bad I could scream!!
I think it's important we stick with it though. I read an article about Kylie minogue saying she hated the flushes so much that she wanted to stop taking Tam but her doc persuaded her to keep going and she says she is glad she did.
But some days, after my 17th hot flush of the day, I just want to give up!! I won't though.
Take care

[madkiki]

Hi the Gen, I've come on here tonight for the first time IN AGES because I'm struggling so much with the hot flushes, like you I only have to blink and I have one, then I'm freezing cold. I have fans all over the house so I can collapse in front of them, some are so bad I have to sit down. Tried everything, been on Tamoxifen/Arimidex for 4 years, changed brands, no difference. Then of course there's the night sweats too, all very miserable 😞 x

[madkiki]

You have my sympathies, I'm at my wits end with hot flushes, it's been 4 years and they're as bad as ever. I'm on arimidex/exemastane now having changed from Tamoxifen when I had my ovaries removed. I've tried just about everything apart from acupuncture which isn't available locally. Unless you've experienced hot flushes it's impossible to understand how dreadful they are.

[Twizzle3]

I'm having an awful time with 'drenching' ! Have been taking Tamoxifen for 11 months, have tried Venlafaxine and Coloinidine but nothing worked. Going to try star flower oil again but not sure how long I can put up with living like this. Trying to do my best but it's beginning to get to me now 😞

[lizzy22]

I have been given wockhardt and have been taking them for 3weeks and so far have been okay .I dont know if it will change when I have taken them a bit longer ( hopefully not ) 

Hope everybody is doing

well

Kath xx

[danielafederic]

I have been given Wockhardt, they said it was bad, however it doesn't make difference for me... I was told by BCN that they tell us to expect the worst but it doesn't always have terrible side effects, depends on age as well. Good luck anyway 🙂

[The]

What make of tamoxifen is best? I heard the one beginning with N is supposed to be good but can't remember what it's called. Does anyone know thanks xxx tracy

[danielafederic]

I went on a diet, lost 7.7 Kg, cut carbohidrates, completely gave up take aways (I didn't eat many anyway, but I noticed that even the "lightest" takeaway curry prompted hot flushes) and started Hathat yoga. No more hot flushes for me (Tamoxifen since September 2013). 🙂

[PenguinBiscuits]

Hi. Thanks for all your comments. I'm now back on Accord but hot flushes are still bad and my pains have got worst. Hoping things will eventually settle down, some days are better than others. I'm trying diet and exercise to improve things. Hope it works. Take care.

[Guest user]

making sport help me very much both flushes and joint pain..... i walk every day for an hour ( with my sweet dog)and I swin for an hour every sunday morning....these help me so much!

[Abbey57]

Hi Penguin Biscuits, I have also noticed a difference between brands. I had accord for two months and I've now been on Femara for one month. I am having more hot flushes now, but don't feel as stiff in my ankles.i would have stayed on accord if it was available, but my gp practice has changed supplier.

[songbird68]

I get them and night sweats(are they different things, or one and the same?), but I am not too uncomfortable when they happen. So far..!

Take care xx