Who has experienced little to no side effects from Tamoxifen!

9lives70

This question inspired by Lisey's comment that many of you are not experiencing bad SE's from Tamox. I'd love to hear from you

pupmom

Initially, I had a lot of hot flashes, but after a year those have pretty much gone away. I haven't had any other side effects.

Lucy55

I have been on tamoxifen for 2 and a half years now with no side effects at all ...I was scared to start taking it as I have bad reaction to most medications I've ever taken ...But I'm very grateful that taking tamoxifen has really been a non event for me .I hope it is for you too .

9lives70

That is great to hear! Thanks for letting me know:) ox

ErenTo

I've been on tamoxifen for a total of 14 months, and have had virtually no side effects so far, except for some hot flashes which are manageable. I've been on hormone therapy for a total of 18 months which included a 4-month switch to Aromasin which didn't agree with me at the end, so switched back to Tam for now.

ShareTheLight

How encouraging to hear that there are some out there finding success with Tamoxifen! Can you ladies tell me if any of you are PRE-menopause? I just turned 40 and recovering from surgery (but margins weren't clear so going in again next week) and Tamoxifen is most likely in my near future but a couple of my friends have had really bad experiences on it. I'm wondering if age plays a big factor. Thx and best wishes to all!

Freya244117

I'm another one who had no problems with it. I did have hot flushes, but that could have been from being put into chemopause.

ErenTo

Share, I was 39 at diagnosis and went into chemopause with chemo, but that didn't last and got my period few months later. So yes, I was and am technically premenopausal. But being high risk I opted for ovarian suppression which effectively puts me in chemical menopause. I haven't noticed much difference being premeno or otherwise in regards to tamoxifen side effects.

pupmom

ShareTheLight, MOST people do not have significant side effects from Tamoxifen or Als. I was 61 at diagnosis.

ShareTheLight

Thx Eren! You've been through a lot so I commend you for your courageous fight! A good friend was only on it a few mths before she could hardly walk anymore because her legs hurt so bad so she opted to go off and turned to natural alternatives which seem to be working well for her. Another very close friend is currently about to have a full hysterectomy because of tumors that have now developed in her uterus which her onc is saying is from the Tamoxifen. So, naturally, I'm terrified of this "solution" causing many more problems. Will have lots to conisder!

mellang

New here to this site and I must say that the last 3 months have been the most terrifying of my life! I have a very supportive family but there is nothing like hearing from others that are going through the same thing as you.

I have been debating the risk of Tamoxifen and if I wanted to start it; so glad to hear that the risk are small! I have 4 more weeks of radiation and then I am to start the Tamoxifen,

Nanka

I was also diagnosed at 40 and have been on Tamoxifen since. I am now 45 (going on 46)....The only side effect I have (and who knows if it's tamox or pre-meno) but my period is all over the place. Sometimes heavy, sometime light, sometimes late (like 3 months)...really, it's a crap shoot. Been checked out by OBGYN and all good. Weird. Chemo didn't fry my ovaries like some others.

Moderators

Hugs to all of you, and welcome mellang to our forum. Please do share how you feel once you start the Tamoxifen! Hang in there Everyone!

9lives70

so glad to hear many of you are doing so well with the Tamoxifen...

Tmh0921

I'm on my second round of Tamoxifen; I took it at age 27 after being Dx with IDC, and began taking it again in August of 2016 after a Dx of ADH.

The first time I took it I had almost no side effects. I did have ovarian cysts caused by the Tamoxifen, which caused no symptoms. I stopped taking it after 2 years to have a baby.

When I started taking Tamoxifen again in August, I had a lot of side effects. I had weakness, fatigue, night sweats, hot flashes, gas, and intestinal upset. I had been taking the generic brand Teva, but the pharmacy couldn't get that brand when it was time for a refill after 90 days. I switched to the generic brand Watson and ALL of my side effects, with the exception of night sweats, have gone away. While all brands of Tamoxifen have the same active ingredient, they don't all have the same inactive ingredients/fillers. The Watson brand has fewer fillers/inactive ingredients - I think that it was one or more of these that caused my side effects on the Teva brand.

Interestingly, I went back to my old prescription bottle from my first round of Tamoxifen years ago (part of what I saved from my journey) and found that I took the Barr Pharmaceuticals brand of Tamoxifen. Barr is now a subsidiary of Teva, but their line of Tamoxifen was divested to Watson. Watson is the brand that I'm now on that has resolved most of my side effects.

Anyway, I got off topic a little, but I'm currently taking Tamoxifen 20mg at night, with only night sweats as a side effect. I am pre-menopausal, and currently 44 years old. My periods are also still on the same 28-35 day cycle I've always had

Tracy

molliefish

12 months and 11 days. I have not had any side effects that I haven't been able to attribute to something else. Hot flashes are considerably less then before I was diagnosed, my feet don't seem to hurt in the am any more. Give it a try. You have nothing to lose and everything to gain.

ShareTheLight

Mellang, looks like our dx have similarities but you're a little further along the process than I am. I'm also apprehensive about Tamoxifen but as Molliefish said, we have a lot to gain by at least giving it a try! Look fwd to hearing about your progress and so happy you have a good support system as I know I'm thankful for mine! 😘

Sjacobs146

I was on Tamoxifen for about a year and a half, and the only SE was hot flashes, which could also be attributed to the onset of menopause. I switched to Arimidex in December, and I feel the same. No SEs other than the occasional hot flash. My MO told me that most women do not have serious side effects from Tamoxifen. But that is small comfort If you are one of the unfortunate few who do experience SEs. I would say to not be afraid to try it, if SEs are bad, you can always stop

Krista21

I have been on tamoxifen for almost 2 years and I have not experienced any side effects I am 33 not sure if I should be worried it's not working???

Sjacobs146

I experienced little to no side effects on Tamoxifen. I did experience hot flashes, but that may also be due to chemopause, now menopause. I took Tamoxifen for about 18 months before switching to Arimidex. According to my MO, only a handful of women in her practice experience severe SEs from Tamox

EastcoastTS

I've only been on it for two months -- but no SEs that I can tell yet. Headache a few days when I first started but they went away. And I get migraines sometimes, and they were nothing like that. Minor.

GOOD luck!!!

gb2115

I'm not having many SE. The timing between my periods is lengthening, so I can't tell when it's about to start. I only get hot flashes mid cycle when I'm ovulating (which I can unfortunately feel). Otherwise, nothing. The hot flashes didn't start until about 2 months in. I am a little over 4 months in now.

Nancy2581

I've been on tamoxifen for almost 2 1/2 years. I do get some hot flashes, but nothing terrible. For the first time I had an abnormal pap smear in May. Who knows if the tamoxifen caused it. I had to have a cervical and endrometrial biopsy. They came back fine. The good thing when I had that endrometrial biopsy was that my ob/gyn couldn't get hardly any tissue. She estimated my lining to be 1 - 2 mm. Tamoxifen can cause uterine thickening.

Nancy

mellee

I've been on tamoxifen for almost 6 months now. I was very nervous to start, as I was already suffering from insomnia at the time and worried the tamoxifen would make it worse. I was also put off by the many tamoxifen horror stories. But the experience has been way better than I expected and feared.

I experienced pretty bad night sweats and muscle aches and pains in my hips and knees for several months (magnesium helped with the latter). However, those side effects gradually disappeared, much to my pleasant surprise!

Other than that, tamoxifen has made my periods shorter—which is no hardship.

The only negative side effect I'm still experiencing is mild acne (which I haven't struggled with in nearly 20 years). Talked to my dermatologist and I guess this can happen because of the hormonal changes. I'm experimenting with different skincare products to see if I can clear things up. Hoping this will be another side effect that disappears on its own (although it didn't crop up until about 2-3 months into my tamoxifen treatment).

Almost forgot: I also seem to be losing more hair than normal. But the thinning isn't noticeable (I have a lot of hair). Hopefully, it will stay that way!

Artista928

Thankfully, me! I should be on an AI with my profile and age but way too debilitating se's. Back on T with overall little issue. Hopefully it holds since I'm on the 10 year plan..

Annette47

Over 4 years on it, with minimal side effects and nothing I can’t be sure wouldn’t already be happening just due to my age (irregular periods, hot flashes, etc).

ShareTheLight

So I commented a couple mths back before starting Tamox and now I'm a little over 3 weeks into it. I finished radiation on Jun 12th and started feeling some pretty severe fatigue in the last couple weeks. Also, I'm getting bouts of depression. It's hard to tell if the depressed moods are from feeling fatigued and missing out on things in life or from the Tamoxifen. Haven't heard anyone in this thread mention anything about moods. My MO says that all of it can be from the meds as hormones cause all types of stuff to happen. She said most women adjust in 2-4 mths after starting. I'm truly hoping both the fatigue and depression start to subside because it really, really sucks! I'm 2 days late on my period and this is my first cycle after starting meds but I guess irregularity is normal. Anyhow, if anyone has had similar feelings, I'd love to hear from you. Thx!

edwards750

I am 6 years out from BC DX next month. I took Arimidex at first but I was DX with borderline osteoporosis so my ONC switched me to Tamoxifen.

It's no walk n the park but my side effects were mild in comparison to some other women. I had difficulty concentrating and constant joint pain. I gained a few pounds but nothing major. Idk if I was really depressed so much as anxious and given I'm already a poster child for worrying it just exacerbated my nervousness. Didn't help my DH and I were dealing with antics of our youngest son. Some were serious. Fortunately he has grown up so not so much a concern anymore.

Everyone reacts to it differently. My Oncologist prescribed anti-anxiety meds but I never took them. I was determined to weather the storm on my own and I did just that.

There are other meds out there so don't suffer through it if it becomes too hard to cope. You have to be able to function.

Good luck.

Diane