Start Tamoxifen-April/May 2011

TonLee

There are a few other Tamoxifen threads here with very good information. 

However, they are very long and laborious to read.

So, I thought some of the newest Tamoxifen partakers might like to post here about individual experiences, expectations, etc.

I started Tamoxifen on Monday 4-25-2011.  I take 20 mg in the morning with my coffee and synthroid/armour thyroid (hypothyroid).  I've read Tamox affects thyroid meds, so my Endo is watching that closely...right now I think I need to lower my thyroid dose..(usually do every spring).

TonLee

Bump

Sherbear

I started the same day, but taking mine at night, before bed (I take my DIM in the morning when I get up) with a bit of protein powder and almond or rice milk.  So far so good.  Doing the full 20mg. 

TonLee

Sher,

I'm thinking about taking mine at night ... but I've read it can cause nightmares??

I think it might be interacting with my thyroid meds....I'll give it a week just to make sure.

I have def. started noticing more intense hot flashes in the last 24 hours.  With chemo I sweat on my head and between my breasts....with Tamox, I sweat all over...even my arms...

Sherbear

I seem to have few more warm flashes and a few night sweats, but all is well as of right now.  4 nights and counting, lol.....

TonLee

Sher,

Are you hungrier?

cms77

I started Tamoxifen 4/16. My eyelashes have started falling out just recently.  Do you think it's due to the Tamoxifen?  I've been taking Biotin for my hair/nails, too.  It's very frustrating as it was great getting my lashes/eyebrows back a month or so after chemo ended.  My hair is still thick and curly, though, haven't noticed any hair loss.

Christine

TonLee

CMS,

One of the potential side effects is "thinning hair," but I doubt that means eyebrows. 

I've read if you lost all your eyelashes at once with chemo, you will likely lose them 2-3 more times because they are on the same grow/fall out cycle.  When was your last chemo? 

I haven't heard of anyone losing their eyebrows again.  Hmmm. 

cms77

TonLee,

Well, thank God I hopefully won't lose my eyebrows again!  Thanks for the info about potentiall losing my eyelashes again due to the chemo.  My last chemo treatment was December 6th, almost 5 months ago.  Had surgery in January (BMX) with immediate reconstruction (TE's), and then radiation (28 treatments) that ended April 12.  Scheduled my exchange for permanent implants for June 8th.

christine47

I finished my chemo yesterday, and will see my onc in about 1 month.  Feel sure that is when I will get my rx for tamox.  I have heard that many are poor metabolizers, did you all get any info on that.  When do they recommend taking the tamox, morning or night?  I will be joining you all soon.

Sherbear

Ton Lee, my hunger seems to have stayed the same.......so far.

I finished my chemo mid november and have found that my lashes and brows seem to be getting a little sparse again.  It's not the Tam, I only started it on monday night and noticed this before.  Just figured it's my body getting back on track after chemo.  Hair on head is fuller and thicker though.   

TonLee

CMS,

You had rads with expanders.....how did your skin do?  I am getting ready to start and will be expanded the first couple weeks of Rads...

TonLee

Christine,

My Onc told me I can take them anytime...with food or without.  I haven't really researched the Tamox because I didn't want to give myself SE mentally...

Sher,

I don't know if my hunger is Tamox or the fact I'm weaning off sugar after Easter.   Also, as I mentioned above, I've read some women lost their lashes a couple times (up to a year out) from chemo if they lost them all at once the first time.  The eyelash cycle becomes the same for every lash, so they fall out at the same time.

I asked my Onc about Latisse...he'd never heard of it! 

I'm 5 weeks out from chemo and the eyebrows are blond and sparse, and the eyelashes are skimpy but hanging on....don't know how much longer they'll last though.

christine47

Hey girls,

I still have my lashes and brows.  My eyes are itching and watering like crazy, but also have had taxotere and bad allergies.  Did your eyes itch before the lashes came out?  Hard to believe an onc has not heard about Latisse, does he never get this question, or turn on the TV? 

I have heard some women have decrease appetite and wt loss with the Tamox, I am wanting this SE!  

Have a great weekend!

TonLee

Christine,

Most of the women I've talked to on Taxoterrible lost eyelashes and brows 5-6 weeks after last TX.  Some of them lost the lashes again about 5 months out and even 12 months out...but I think that has to do with them all falling out at the same time originally....mine are thinning, so I assume they won't all come out at once....~crossing fingers~

My lash line is itching too.  Just like my head did before I lost my hair.

I've love the decreased appetite SE!!

I'm meeting with an Onc OB this week to discuss a hysterectomy.....so I may not be on Tamox for 5 years...depends....

Sherbear

I was told by someone who had already went through chemo (for another type of cancer though), to NOT touch my lashes or brows and they might 'hang in there'.  Well, they did, for a good long time.  I started losing my hair almost 2 weeks after my first treatment and shaved it down right away.  That was almost the end of september.  My lashes and brows stayed full until around Christmas time when they started to fall out.  The good thing, by the time my brows were fully gone, they were already growing back really fast so with a bit of brow wax and powder, they looked totally normal.  The lashes I find take longer, but are almost now back to normal.  It was great because since I didn't lose ALL of my hair together, I felt that I didn't look "sick with cancer" when I was bald.  I think bald is actually beautiful and love when I see the women with their hair starting to grow back, it looks very chic.  That's just me though, hope I haven't offended anyone here.

NHsmiles

Hi Gals!!

I tried starting Tamox a few days ago and was severly nauseous the second day...have any of you experience this?

My body really seems to have had enough of these chemicals.

Heather 

TonLee

Sher, that's good to know about the brows

Heather, another woman on this forum had the same issue...she recommends taking Tamox with food, something with some fat to it. 

TonLee

Here's an interesting tidbit.

Body builders who use steroids, often take nolvadex (tamoxifen). 

http://www.steroid.com/Nolvadex.php

Bodybuilders who take Nolvadex also use anabolic steroids at the same time. Since most steroids aromatize more or less strongly, i.e. part of the substance is converted into estrogens, male bodybuilders can experience a significant elevation in the normally very low estrogen level. This can lead to feminization symptoms such as gynecomastia (growth of breast glands), increased fat deposits and higher water retention.

Paula1231

Hi TonLee,

Good topic!  I have been on tamox since February and so far doing really good.  I had a bit of joint pain the first couple of weeks, but no pain, nausea, nightmares, hunger or anything negative.  Every now and again a hot flash.  I was one that lost all remaining lashes and brows two weeks post Taxol, but I am two months post chemo now and I have lush lashes and a lovely head of half inch hair. 

Can't wait to be able to color and style it tho.. 

TonLee

Paula,

Good to read!!  Thanks!

Isn't it ironic that so many women with BC have reservations about taking Tamoxifen, and it is one of the "most wanted" drugs in the body building community??

For some reason knowing that made me feel better about taking it.  (I know, weird.)

I'm not sleeping very well...but hope that will pass with some time....

jan508

I've been on Tamoxifen since October.  SE's come and go.  I do notice that I get nauseous for no reason but then it passes quickly or when I eat something.  So, I've been trying to eat small portions throughout the day even if it's some almonds or a piece of fruit. I gained 15 lbs on Tamoxifen but leveled off and going to personal trainer to lose it again. 

As far as eyelash loss, I had none but my PS does Latisse (someone asked about that). I didn't need chemo so I only had very very little hair thinning from Tamoxifen.  You need to realize that Tamoxifen IS a chemo drug.

Other than that going to the gym almost every day has helped alot with hot flashes.  I was post menopause at time of BMX so I was already past hot flashes etc...SE's on Tamoxifen have been pretty mild thank goodness.

Jan

cms77

TonLee,

My skin did great with the TE's following surgery.  Not normally an asset, but my breast were 'droopy' so I had enough skin to do a lift along with nipple sparring (my PS made two nipples made from my left nipple).  I healed pretty quickly, and I got used to the TE's within 6 weeks.  I hardly notice them now.  My right nipple is not perfect but my PS said we may graft some skin there to make it look more normal.

Christine (CMS77)

cms77

When I started Tamoxifen, I had a headache for about a week, but that went away.  Have some leg cramps/stiffness which could be related.  Not much other than that.

 Christine (CMS77)

TonLee

Christine,

Good to know ..thanks!  Did you have Rads?  (Sorry if you already answered this...lol...I'm in a rush this am..)

Rennasus

Been on Tamox since March 24...

Had increased thirst (and frequent urination) the first 2 weeks or so, then that went away. Hot flashes have increased (I had them mildly before starting Tamox, they are now mild-to-moderate). I have *not* had any leg cramping or stiffness (tho many women report that as a common SE).

My only complaint now is dry skin, especially on my face. Very dry! The facial products I used before Tamox all make me itchy. I am using food-grade organic coconut oil on my face and body as moisturizer. (Vasoline actually works the best but I worry about it being made from petroleum.)

Bottom line: Over time, it seems most of Tamox's SE's really do work themselves out.

TonLee

I hope they do fade Renn, because I'm having serious fatigue....WORSE than anything I experienced after surgery or during chemo....I'm going to switch to taking Tamox at night starting tomorrow...it has wiped me out the last two days....it takes everything I have just to get in my workout...and I didn't have half this problem during chemo....

cms77

TonLee,

 Yes, I had rads, 28 treatments.  Finsihed April 12th.  Getting my energy back gradually has been wonderful.

Christine 

wenweb

TonLee  Although I started taking Tamoxifen a month ago, I initially was on Arimidex, and it completely knocked me out.  I breezed through my surgery and 30 rads, and it was about one month after I began to take the A that the exhaustion took over.  I totally think that the T could be causing you to feel this way.  Some will say that it is a delayed reaction to the rads or "everything you have been through", but the timing is kind of sneaky.  Good-luck.

Rennasus

TonLee,

Oh no. I have been feeling sooo tired too! I think you are right about the fatigue being an SE!

I had 2 incision surgeries after I started Tamox, so was chalking up my extreme tiredness to the fact that I was still healing...but it is probably the Tamox. I need a nap every day.

I did not make the connection when I posted my other SE's earlier!

TonLee

CMS-Glad to hear you're getting your energy back!

Wen-That's just it...they can't say that to me because I haven't had Rads yet...I post-poned to heal and get a few fills....I've often read on the Rads threads that women hit 3-5 weeks into Rads and the exhaustion sets in...makes me wonder if I was taking Rads right now...how much WORSE it'd be...

Renn-I KNOW its the Tamox.  Today I didn't take it with my coffee, (am going to start taking it at night) and I WASN'T TIRED!!  I even had a Herceptin Tx, (which always makes me tired for a few hours after) and it was NOTHING like the Tamox.

I'm gonna start taking it tonight, see if that helps....I'll let you know.