Tamoxifen, it's not all bad is it?

GG27

Tazzy, I didn't think I could cut out carbs either, I had just bought a $150 pasta maker, but I found it very easy to do once I did some research into what I could eat.  DH is down 2 pant sizes & I just had all my pants taken in 4"!    Anyway, hope the headaches ease... GG

Stormynyte

We need more non horror stories!

IndigoMont11

I have been taking Tamoxifen for about 3 weeks, so I think probably long enough for unpleasant SEs to start showing up. But except for more intensity in hot flashes, I'm not noticing anything. As for the hot flashes, they aren't unbearable. Mostly I have them at night, and I take ambien, which helps me sleep through them. No horror stories from me! You can do it.

Joanne58

Tamoxifen has become my security blanketthese last 1 1/2 years, post bmx/chemo/rads.  At first I was fearful about taking it, but that was short-lived.  Hot flashes are minimal and predictable.  They happen to me when I'm too hot already in high temps, get nervous about something or  when I first get snuggled  in bed with blankets up around my neck.  They don't last long and the sweat is usually just on my forehead. I think of the flashes as a sign for  me that the tamox. is working.....but now  my hormone levels are showing a big drop and my onc.  wants me to switch to Arimidex in May--dang it!  I was hoping to stay on T. for the remaining 3 years.  

Best to all and thanks for all the positive posts!

sandpiper1

Here ya go Stormy.....

I have been on Tammi since Oct 20.

Here is the positive .....er ........lack of negative .......

I have no idea what a hot flash feels like.

I think I had a couple of warm feelings but I can also say they were times when I was at the beginning of my work shift.

I had my Mirena removed in May. My periods were lacking/or almost non-existent while I had it in. Once out, they were arriving about every 3 weeks (21-25 days which is unusual for me). Once I started the Tammi (right before my next period was due) my periods have arrived on day 28 without fail.

No heavy bleeding, extra vag drainage or dryness to speak of.

Maybe this has nothing to do with the price of rice..........

But I have had no breast pain with periods since starting Tammi.

When on Mirena that was how I could tell I was PMS-ing.

I am as cold as ever and had joked that Tammi could regulate my core temp. (had the thyroid checked-all normal)

Incidently I am on baby aspirin. Found that it was giving me severe reflux on occasion-mind you I have had reflux since surgery but it worsened. I am now taking a 2 week course of Prevacid and take the baby ASA mid day to avoid the reflux. I may reduce how often I take it as I have noticed a little more bruising lately. But I am a clumsy sort. Seems to be working.

My MO originally told me to try Tammi and I could go off T if the SEs could not be managed. Said she had every reason to believe I would do very well on Tammi considering I am Youngish (LOL) and in good health despite the BC Dx.

So last time I am there I tell her About the few SEs I had and she says give it time....I haven't been on it long enough for it to cause the hot flashes, irregular periods or some of the other common SEs.

What????? HUH???!!!!

Anywho...............

Kind of threw my confidence in her out the window. I was very sad and depressed about a few things that had occured during my appointment that day and find myself in the position of MO shopping.

Good thing I have some time before I need to see an MO again.

I have the heater on high in my bedroom. I am only up late because I went out to dinner with a friend and her daughter and we had coffee at 10pm. What was I thinking?????

Just wanted to make some positive points. I know I am still early on the Tammi train-My mother said she doesn't remember having any SEs besides hot flashes and she had already had them before BC...so not much of a bother to her.

Hoping everyone sleeps well and has a wonderful weekend

piper

Tazzy

Been on tamox since December 6 - except for the headaches... we are easing and not every day now, I've had no real other SE - except hot flashes and like Joanne are normally when I am already in a warmer environment.   So far so good.

Marcia1111

I've been on Tamoxifen almost 2 months and am finding the se minimal also.  The hot flashes come on quickly, but then go away quickly.  Otherwise, nothing much.

Rdrunner

Thanks for this thread. Seeing my MO for the first time this week and given my cancer is 95-100% hormone positive I am presuming this is going to be suggested given Im pre meno. I have been stressing about it given what I have read here, so I am so happy to hear the other side also. 

txmomof2

I've been on Tamoxifen since May and I only have short hot flashes every once in a while.  And I get my periods every 6 weeks now - whoo hoo!!  I was having night sweats at first BUT I live in Texas and started taking the meds during summer.  That might have had something to do with it too! 

Hipline

I will hit my two year Tmx anniversary the end of this month.  I find it very manageable with the exception of sleep.  And that is due to the hot flashes which seem to rarely bother me during the day but do wake me at night.  Today I saw my breast surgeon and got the all clear from my recent MRI and she gave me a prescription to Ambien as well as a compound for the hot flashes.  Looking forward to experimenting with these two!  

Tazzy

hipline:  great news on the clear MRI.   Hope you can get a good nights sleep.

So far so good for me on tmx.   Had some very slight headaches but they are at the beginning. hot flashes, really are just flashes.  They are over so quick - but dont wake me at night yet.  So far I have found it to be pretty kind to me.

unowhoandwhy

I only started taking it December 27th, so it's probably too soon to claim myself nearly SE free, but the only issue I've had so far is a slight bout of dizziness that lasts about an hour or so, about 2 hours after I take it. As long as I take it at night & fall asleep within the 2 hours, I don't even notice the dizziness... to be honest, I may not even have it anymore, but I'm afraid to take it in the morning cuz if it ain't broke, don't fix it!

Tazzy

Here's a thread on tamox.   I wanted to find something positive about it rather than negative... this is it.

http://community.breastcancer.org/forum/78/topic/785445?page=4#idx_102

Loral

I started it on 12/13 and now I have really bad night sweats and no sleep, I know I'm sick right now too, but I hope this doesn't go on much longer.

Stormynyte

*bump*

iatigger

Hey Stormynyte, how has your experience with Tamox been going? I have been on it since October and the only SE has been a warm flash occasionally, nothing intollerable.

gratitudeforlife

Hi ladies, I am  new to this board, and I want to begin by thanking stormynyte for beginning this thread.

I have been taking Tamoxifen for almost two weeks now, not a long time, yet the three SEs, which are minimal and manageable, are as follows: slight headache after taking the pill (lasts 2-4 hours); stiffness/soreness of hip joints, esp., (3) warm flushes not hot flashes. I, too, was terrified to take this drug, given all the horror stories posted on some threads. It is very doable, and I am looking at it as being blessed to be able to take a drug that protects me from a recurrence or from metastases (I know, there are no 100% guarantees).  Given how terrified and freaked out I was, I hope this post makes other ladies feel much calmer/better. 

iatigger

gratitudeforlife, I have read of several others who had SE's that were caused by fillers, it might be worth looking into a different manufacturer with different fillers to see if that resolves any of the headache or stiffness you are having. I think the warm flashes are a given regardless. The mfg I have is by Teva and the only SE I have had since October is the warm flashes.

gratitudeforlife

Iatigger,

Thanks so much for the info., re: different fillers used in Tamoxifen pills.

I should add, re: SEs, that I notice I am more emotionally sensitive.  Has anyone else noticed this SE? Other than the SEs I outlined above, life is returning to normal. Hallelujah!!!

iatigger

I have that emotional sensitivity too. Kind of depends on the day though so I never know if it is normal hormonal sensitivities or tamoxifen causing it. Glad life is moving forward for you. Seems to be for me too.

Tazzy

Happy to hear life is moving forward... mine too - loving it !

My pharmacist at the Cancer Agency did tell me that Tamox can make you more emotional/moody.

smo23915

Does anyone have headaches taking Tamoxifen.  I am wondering if it could be the brand.  Could someone without SE share the manufacturer they are using.

Thanks,

smo

Tazzy

smo23915:   I had headaches in the beginning.... started tamox in December.   Now and again I still get one.   Nothing debilitating but definitely a SE. 

dnadebbs

hey all!

been on Tamox since 9/12.......and so far i just have the hot flashes at night and once in a while during the day.   they definitely wake me up at night tho!   phew!   chemo stopped my periods and they never started up again so i have that going for me.   not sure if the tamox extended it or the fact that i'm 48 and menopause just kicked in with chemo....never to return.   

i do however worry about the drug and all it's side effects.   i want it to just be easy.......and not have to worry about it......like everything else i have to worry about!   sheeeesh!   lol!

ally

GG27

smo, Sorry you're having headaches.  I take APO brand now, headaches weren't my issue but the SE's with some of the other brands were bad.  I've been taking APO for almost 2 years now with only slight hot flashes/chills.  Good luck, GG

Stormynyte

~Bump~

Stormynyte

Would love more stories!  The horror stories outweigh the positives so much, we need a little balance.

Heart2930

Stormynyte,

Thank you so much for starting this thread. I am scheduled to start Tamox that day after I finish Rads and quite frankly have started to dread that based on other threads. I feel much better now knowing there are people who have little to at least manageable side effects.

Thank you!!!!!

Rose_d

Hello all,

Just wanted to add my experience - I've been on tamoxifen since Setember 1, so almost 9 months.  I have had very few to no side effects.  I had hot flashes for a couple of months but they were very manageable - more strange than anything else.  But those have stopped completely.  I actually got my period back after 4 months which completely freaked me out.  My doctor assured me that it was just a sign that I was young and my body was recovering from chemo, rads, etc.  I only got it twice and it seems to have stopped again.  I am 41.

I am trying to lose weight which is proving tough.  I don't know if that's due to the tamoxifen or my age or just all the food I seem to put in my mouth on weekends! But could imagine it is at least in part due to the tamoxifen.  I'm not gaining weight just not losing it fast enough.

But overall I would say I am 'fine' on tamoxifen and really hope it's helping keep the damm cancer away!

Good luck to you all,

Rose

Annette47

Been on it since April 1st, so not quite 2 months and doing well.   The only side effects have been good ones and are related to my menstrual cycle - over the past couple years (I am 45) my cycles had been getting closer together, lasting longer and were quite heavy.   The two I've had since starting Tami were farther apart (closer to my lifetime "normal"), much lighter and over quicker.   Plus I no longer am getting the breast swelling/tenderness that I've had as part of PMS for my entire life and which had been starting earlier and earlier.

I'm sleeping sounder than ever at night, can't remember the last time I had a headache and have not had any hot flashes or joint pain, so at least at this point, I am in the positive view of Tamoxifen camp!