Tamoxifen, it's not all bad is it?

iatigger

Hi gals, glad I found this topic because the other one is nothing but major negatives about Tamox. I go today to find out if this will be my next course of treatment and now feel better about it. Thanks for sharing.

iatigger

I have now taken the Tamox plunge this morning. Lets see if I can be one of the lucky ones with minimal SE's.

Staciee70

I've been taking tamoxifen since 10/15 and so far so good



I'd been reading all the posts too and as a result, I swallowed that first pill like it was cyanide. It's good to know what can happen but it's not inevitable by any means.



I haven't noticed any side effects at all so far. Yay!



I'll keep my fingers crossed for everyone

iatigger

Staciee70, lets hope we continue to be the percentage that has no annoying SE's!  I am only 3 days in so I am probably being overly optomistic but I would rather do that than dwell on what could happen. Happy weekend everyone!

Mardibra

I started tamoxifen in July. The only SE I have s hot flashes. They were not fun so I finally decided to take my onc's advice and take Effexor. Magic pill! No more hot flashes.

iatigger

Good to know should they decide to show up.

How quickly did the flashes show up after you started the Tamoxifen?

GG27

I was one of the ones that had a terrible time on Tamoxifen, I had terrible SE's, but my MO & I perservered & discovered that myself & a lot of other women who get bad SE's are actually allergic to some of the fillers used.  The drug is the same but every company can use whatever fillers they please. 

I have now been on APO brand & I don't have any SE's, have been on it for over a year now, feel great, no joint pain, few flashes, losing weight. 

Stormynyte

Oh good to know GG27! Thank you for that info.

mamabee

I've been on tamoxifen since August and the only side effect is a bit of vaginal discharge - but considering chemo had put me in menopause and I was like a desert down there, I don't consider that side effect a bad thing. I've also lost about 7 pounds (of the 15 lbs I put on during chemo/surgery/rads) so that's good too. Still have hot flashes, but they're no worse than my chemopause-induced ones. For me, it's been no big deal and I'm very thankful for it as I'm 100% ER+.

GG27

Stormy, I post this info in case it can help someone else, I was in agony & tried everything, I've been on every different brand & finally after so much research figured out the culprit for me.  Just hoping that my work helps even one woman avoid horrid SE's & is able to stay on hormone therapy - GG

Stormynyte

So I stopped the Tamoxifen about a week ago so I can start chemo. I was hoping the pissy mood would go with it, but nope. Guess I can't claim it as a SE anymore. Lol

Anonymous

Stormynyte~ my MO told me that Tamoxifen has a long 1/2 life and takes about a month to get out of your system.  So you can blame your mood on that for a little while longer.

And thanks for starting this thread.  I heard my share of horror stories before starting it as well.

I'm about 1 1/2 years into Tamoxifen and have no noticeable SE's (I do take Effexor though).  I had a little joint/hip pain...but honestly noticed that before the Tamox so who knows.  I do take glucosamine and it seems to help.  Interesting about the fillers being possible allergens.  Good to know!

liefie

Hi everybody,

I have been on Tamoxifen since Aug. 1. The only SE is a few hot flushes daily. I don't feel I need anything for it, because it is not severe. It does not bother me at night, and I sleep well. Only thing that I struggle with is that I cannot lose the 10 pounds that I want to lose despite working out in the gym, doing yoga, and walking the dog. At the moment I am basically eating a vegetarian diet in an effort to lose the weight. After lots of research it seems that it is chemo and radiation that change our metabolisms and slow them down, and that Tamoxifen is not the culprit.

Best wishes from Vancouver Island. 

Tazzy

Hi liefie... thanks for popping over.   I start Tamox in a few weeks.   Pharmacist told me the exact same thing about chemo/rads changing our metabolisms - he also said you can lose weight as well on tamox.   Hope I am that person

fredntan

I haveben on tamox since may. No SE.

Hot flashes started before tamox, and i hardly have them now.

Have trouble sleeping, but that started when i found out I hadBC.

No joint issues

jjnscat52

I have DCIS, grade 3, have just finished radiation and they want me to see an oncologist who wants to push Tamoxifen on me for risk reduction as I am hormone negative. I feel backed against a wall

liefie

Hi Tazzy,

Hopefully Tamoxifen will be SE free for you too. And yes, I hope you lose weight on it. Then you can tell me the secret - lol!

Jjnscat52, I thought Tamoxifen was only prescribed for hormone positive people? This is a bit confusing.

Stormynyte

bumping..

terrikoala

I am 66 and VERY post menopausal and still have terrible night sweats and hot flashes. I am almost done with RADS so have to make the Taomox decision soon. I cannot bear any further sweats/flashes,etc. I also have a terrible time getting back to sleep if I wake up in the middle of the night.  Anyone on here in my situation as far as age and post menopause SEs?

Tx

Terri

Linda603

I've been on tamox for 2 years.  Started taking effexor about a year and a half ago.  I still have hot flashes, more so at night.  I'm pre-meno, so certain times of the month are really bad.  I've also gained weight.  This is not a fun drug for me, but I believe necessary. 

Tazzy

Took my first tamox this morning.   Hoping for no SE's... except of course possibly the losing of weight and not gaining

iatigger

Good luck Tazzy. I am a little over a month out on when I started and haven't had more than a slight flushing once in a while and I am not sure that is even from the Tamox. Waiting to see if I miss my period two months in a row now. Can't say I would be upset if that just stayed away.

heartnsoul76

Just saw this thread!  I have been on Tamoxifen for almost 2 years and have NOT had any problems on it.  I am kind of achy, but I don't know if that's the Tamoxifen, left over from chemo, my fibromyalgia or just old age.  And you'll never pin a doctor down on "achy".  One said to try a gluten-free diet - ugh!  I'll just deal with achy.

I just had a transvaginal ultrasound because I was worried about the possiblity of my uterine lining thickening - a possible SE of Tamoxifen.  It was already somewhat thick (8 mm) before I started the little white pill, so I wanted to make sure it wasn't getting worse.  It had, in fact, improved to the levels they prefer - less than 5 mm.

Nothing else to report.  Oh, I do have hot flashes but they are tolerable.  My MO offered Effexor to me (which usually stops them) but they don't bother me that much.

Good luck to the newbies, I hope it doesn't cause you any problems.  I know my MO has a lot of faith in this little pill.

Tazzy

heartnsoul.  Thanks for your post.  Someone with experience in this I find an inspiration to us newbies just starting out.

heartnsoul76

Tazzy - so happy to help!  Yes, fear not the little white pill!  Hopefully, it will be as easy on you as it has for me.  Not that there won't be any problems, but for me they have been small and never lasted very long.  If you ever have any questions, feel free to PM me in case I miss this thread.  

Tazzy

Well, so far so good.  Except I am experiencing headaches on a daily basis.   Not really bad ones, but ones that need tylenol to relieve... and I dont want to be popping anymore pills than I have to.  I will see my MO on Dec 27 and get her to confirm that its only an SE of Tamox and nothing more sinister.  

Anyone else had/have headaches after starting tamox?

besa

Took tamoxifen for 5 years and during that time almost no side effects - a very ocassional leg cramp, one endometrial polyp that had to be dealt with so that was a negative, absolutely no hot flashes or joint pain and I lost weight which I think may have been due to the drug....

Tazzy

Not going to consider weight loss a SE - if it happens.

GG27

I had some headaches at first, can't remember for how long, but not more than a couple of weeks I think.  I tried a few different things, over the counter like Tylenol, Naproxen etc, then acupuncture & then they just went away.  Hopefully you will find the same, be sure the mention it at your MO's appt, (they will probably ask anyway, mine always does)

Crossing my fingers that you will have the weight loss SE!!    I only got that one when I cut out carbs!

Tazzy

thanks GG27 - figuring it is the tamox, but will of course get my MO to confirm.   cutting out carbs ?  Not sure I could, I really like carbs