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Tamoxifen

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

I've only been on this drug since July 1st, but I'm asking if anyone out there has ever felt like their mental faculties ever felt 'fogged'....I know this sounds a bit crazy - but it seems like for the first few hours of taking it - I'm not to alert.  I know I'm blonde, and that probably doesn't help my cause - ha, ha, ha...Anyway, I will probably have to start taking it at night versus the morning...I'm sure its just me...cancer just sucks !!!

Andi

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Hi Andi,

 

I've been on Tamoxifen for a year and a half.  I have always taken it at night just before bed, so have never noticed a 'fog'.

Chemo left me that way for about a year after I was done, so I know what you mean.  Good luck!

 

Chickadee

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

 

I've been on it since Sep '12 and take it at night.  I haven't noticed anything.  Yes, try switching to nights.  Linda

Lynn Smith
Posts: 1265
Joined: Mar 2011

Interestiing.I also take mine at night but sometimes my husband tells me I'm a bit foggy during the day.BUT he knows I try to go in so many different directions at once. 

Change to night and let us know if you see a difference.Would be interesting to know.

Lynn Smith

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Hey Andi. I agree to start taking it at night and see if that helps.

Hugs, Megan

Josie21
Posts: 347
Joined: Nov 2012

Hi Andi,

I was on tamoxifen for 2 and a half years until I switched to aromasin (after hysterectomy).  The biggest problem I had was hot flashes.  As far as feeling fogged, I feel like that most of the time.   I truly believe that it is from the medicine, but I also attribute it to the fact that I suffered from depression after being diagnosed.  I don't think I am depressed anymore, but my mind seems to wonder at times.  As I lose more and more hormones I feel like I am losing brain cells as well!  The worst is when I forget why I walked into a room.  I just laugh it off now because I am so thankful that I am going on almost 5 years of NED.  5 years ago I dreaded going on meds, and now I am dreading going off. Go figure!!

And I agree, cancer does suck!!  

Hugs,

Ginny

SIROD's picture
SIROD
Posts: 2163
Joined: Jun 2010

Please reconsider going OFF Tamoxifen.  Please talk with your oncologist as studies have shown staying on Tamoxifen or going to an aromatase inhibitor has shown to keep a recurrence away.

Doris

Josie21
Posts: 347
Joined: Nov 2012

I will definitely talk to my doctor.  Thanks for thinking about me.  I know I think of you often and hope you are feeling a little better.

Hugs,

Ginny

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Thank you ladies for your feedback - at least I don't feel it is just me...This past weekend, I've switched to taking it at night - so, we'll see if that makes a difference...if it doesn't, I'll than speak to my doctor...I'm just tired of talking to doctors - ugh !!!

Andi   :)~

survivorbc09
Posts: 4378
Joined: Jun 2009

I hope by switching to nights that you will feel batter Andi.

Jan

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Actually, switching to taking the med at night has helped...This is the first time I've ever had to take any sort of medication on a regular basis (besides taking antibiotics)...I hate taking pills and I'm bad at it...that's why I thought that if I took it in the morning when I'm getting ready I'd remember to take it...It's hard to alter routines - Anyway, thank you all for your comments and suggestions...

Andi :)

survivorbc09
Posts: 4378
Joined: Jun 2009

I am glad that by taking tamox at night time that it is helping you Andi.  I hate taking pills too Frown

 

Jan

disneyfan2008
Posts: 5382
Joined: Oct 2010

I am starting MY  LAST Month of tamoxifen (just finishing up 5 years) I personally have not had that issue with the script. As we all know we each react to meds and everyday life things in many ways.

 

HAVE YOU contacted you Dr?

Denise

TraciInLA's picture
TraciInLA
Posts: 1842
Joined: Jul 2009

Hi, Andi -

I've been on Tamoxifen for nearly 4 years (only 6 more years to go...sigh...).  The only major side effect for me is hot flashes, and those are definitely worse for me at night, so I've always taken it in the morning.  I haven't noticed any "blonde" side effects -- at least any more than usual! Smile

Traci

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Traci,

How long after taking Tam. did your hot flashes start?  I haven't experienced those yet - I don't think I would mind - I'm usually cold blooded anyway - I need a little heat...ha, ha, ha...

Andi :)

TraciInLA's picture
TraciInLA
Posts: 1842
Joined: Jul 2009

Andi,

I started out taking Tamoxifen before bedtime, because I've always had a "weenie tummy" (yes, that's the medical term for it! Smile), and my oncologist and I were concerned about nausea.

I'll never forget -- the 2nd night I took it -- I'm lying in bed, and WHOOSH!!!  I was only 40 years old, I'd NEVER had a hot flash in my life, and had no idea what was happening to me!  I discovered very quickly that my hot flashes were worse at night, so switched to taking it in the morning, which helps -- I ALWAYS make sure to take it with food, and thankfully have never had any problems with it making me nauseous.

I started on Tamoxifen only about 5 weeks after my last chemo, so was still getting over "chemo brain," and was afraid I wouldn't remember to take it.  I got one of those daily pill boxes, and I still use it.  I feel like a senior citizen, filling up my pill box for the week every Sunday night, but it really does help me to remember to take it!

Traci

 

LKats
Posts: 1
Joined: Sep 2013

I have been taking Tamoxifen for almsot 5 years and was really looking forward to going off of it and THEN I read an article that said the new recommendation is to take it for 10 years. I see that you comment only 6 more years after taking it for 4, means that you are on a 10 year plan. Is this pretty common?

desertgirl947's picture
desertgirl947
Posts: 433
Joined: Oct 2012

At my last oncologist appointment (June), I was told that research is showing the benefit of extending hormonal therapy to 7-10 years instead of 5.  My oncologist is probably going to go that way for me, from what he said.  I started tamoxifen in August 2012.  Up to now, the plan had been to switch to a different drug midway through the five-year plan.  So, I am not sure -- probably will find out at my next appointment -- if he still plans to make a switch in February 2015.  If so, do I stay with that switch the remainder of time or does he make another switch.

I would say that with all the research that goes on in relation to breat cancer, it ought not surprise us that changes constantly are happening as medical people learn more and more. 

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Like the other pink sisters, taking Tamoxifen at night will probably do the trick.  I was taking Arimidex and the side effects were just too much for me to take.   I started Tamoxifen in March and the onle SE I have are the hot flashes.  My hair seems to be thinning too.  Not sure if there is a connection though.

 

Stick with it.  You deserve the best protection against a recurrence that medicine has to offer.

 

xoxo

Mary

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

I took Arimidex for 2 years and switched on Tamoxifen 6 months ago.  Since I tend to fall asleep at night on the sofa and if I do, it's in both my and my husband's best interest if I stay there, I know I would not be compliant if I took them at bedtime.  I have absolutely no side effects on Tamoxifen, fog included.   Even tho I'm 66, I still have an occasional hot flash prior to awakening in the morning.  I did have some joint pain on Arimidex which was mild and I contributed it to age, but I don't have it anymore on Tamoxifen.  And, I do use a pill box because even with a morning routine, I'd be uncertain whether I took meds or not.  And that fog has nothing to do with Tamoxifen - it's just me!

Hope you can figure out what's causing your fog and can continue taking this medicine because it is important for ER+ folks.

Suzanne

jlharris's picture
jlharris
Posts: 48
Joined: Apr 2013

Suzanne;

Why did you switch from arimidex to tamoxifen? Did you have worse side effects from arimidex? Just curious because I am currently on arimidex (two week now) and have had no side effects.

Thanks,

Jenifer

Double Whammy's picture
Double Whammy
Posts: 2295
Joined: Jun 2010

I'm sorry I didn't answer this previously.  I lost my hair 3 years ago to chemotherapy and haven't seen it since (well, I have SOME hair, but I look like the crypt keeper).  The medical profession has a hard time accepting that it is from the Taxotere because it is a really really rare side effect and my oncologist has been determined it had to be attributable to something else (that can be fixed).  So the switch was to see whether it was  due to the was the Arimidex.  She was not comfortable without me taking something for ER+ and thought that since AIs work differently than Tamoxifen, it was worth trying.  It didn't make any difference.  I saw her yesterday and we decided to stay with Tamoxifen simply because while I didn't think Arimidex was causing any joint pain, I have absolutely none on Tamoxifen so I guess those aches I thought were age ralated might have been related to Arimidex.  I assured her that I planned on complaining about my hair for the rest of my life and since she extended my life, she needed to be prepared to hear about it for a long time.  

And, all the talk about taking Tamoxifen for 10 years instead of 5 - well, I don't think I'm going to do that, but will do it for 5 and revisit how I feel about it then.  "They'll" probably change their minds again by then anyway . .  .

Suzanne 

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

I am not taking tamoxifen Andi, but, if you do have side effects, be sure and ask your oncologist if there is anything he or she can give you to help with them.  You shouldn't have to suffer through taking tamox.

Good luck!

JJDS
Posts: 259
Joined: Apr 2013

I have read that if you have no side effects with tamox, that you might not be metabolizing it.  Anyone else hear or read this? 

TraciInLA's picture
TraciInLA
Posts: 1842
Joined: Jul 2009

According to my oncologist, there is NO correlation between side effects/no side effects and whether or not Tamoxifen is doing its job.

There are a small percentage of women who can't metabolize Tamoxifen, or don't metabolize it well, but there's also a simple blood test for that.  My oncologist always runs that test before putting someone on Tamoxifen.  I'm an "intermediate metabolizer," which is the most common result.  

Traci

 

TraciInLA's picture
TraciInLA
Posts: 1842
Joined: Jul 2009

I also think it's worth noting that there are some common over-the-counter and prescription drugs that have been shown to make Tamoxifen less effective, including Benadryl (diphenhydramine), Tagamet (cimetidine) and some (not all) antidepressants.  From the ACS:

http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/tamoxifen

Before cancer, I used to take Benadryl occasionally if I had trouble sleeping -- now that I'm on Tamoxifen, I've stopped doing that.  And I used to take Tagamet sometimes for heartburn -- I switched to Zantac.

Traci

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Thank you Traci for providing the link...it had some good information...and, I never thought that certain vitamins could affect the effectiveness of tamoxifen...

Andi :)

Daniela Federica's picture
Daniela Federica
Posts: 3
Joined: Aug 2013

I have just finished chemo and have been told that I will have to take tamoxifen, in addition to mastectomy to improve survival. Cancer sucks, I agree. Thanks for raising this subject as it was very useful for me to know what is coming next. It seems to never end... Frown

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

There is an end in sight...and, it sounds like you're on the upswing regarding your health...I was fortunate I didn't have to have chemo - just the mastectomy & rads...each of us is different - and I think its funny that Tamoxifen affects each of us different...

p.s., love the beach pix - I used to live in Fl - and miss it so much....

Andi :)

June Bugs
Posts: 169
Joined: May 2013

There are several antidepressants that you should not take while on tamoxifen.  And, everyone should have the test to see if they metabolize tamox as many don't.  That's why "some" have no side effects, it isnt' working.

Lynn Smith
Posts: 1265
Joined: Mar 2011

Andi.I also hate taking pills. I don't take but 3 meds so not that many but I at times I forgot my tamox.I take it at night like I mentioned.Recently I see my hair getting thinner.Noticed this last several months.I thought it could be my bout with bronchitis but might be tamox.I forgot loosing hair was another side effect.I had fine thin hair anyway all my life. Hope when I go off tamox it gets thicker.

I didn't need chemo or radation with DCIS so that can't be why my hair is thinning.  

I'm counting the months to be finished with tamox.Dec 2014 will be 5 years.Like Sirod said don't go off of it.I took a few months contemplating before taking it and my doctor told me I would be a greater risk of getting another type of cancer. 

Lynn Smith

Lynn Smith
Posts: 1265
Joined: Mar 2011

Yes some antidepreesents can't be taken while on tamox.My family doctor gave me a prescript but when I went to the oncologist she said I can't take it.In the beginning of my dx they were encourgaging me to take something.The stress of it all but With a heart condition since 30 I prefer not to.It's the going off  the antidpressent that worries me.It has to be gradual but I stil fear my heart going out of control.

I went cold turkey drinking caffeine coke.(I didn't know better) My heart meds weren't working. I had to go my heart specialist.Nothing was found.I realized on my own  it was going off the caffeine  coke.Withdrawal.So I prefer not to take anything. The withdrawal was horrific with my heart beating 160 beats a minute till I took a  pill to get the fast beats to subside.The heart meds were only lasting 12 hours and not 24 hours during that time.

There was one nerve pill I know I can take but the doctor said it can't be taken with tamox.

Lynn Smith

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

I too have/had DCIS - but had to have radiation...My hair is already thin and breaks easily...And, I saw that too was one of the side effects :(   Everyday, I choke as I take this tiny white pill - my new name for it is 'cyanide'...I know its supposed to help in reducing the chance of a return cancer - I too have a greater chance of getting cancer in my other breast, as the mri shows calcifications - I wanted both taken off - but insurance wouldn't pay...So, I'll continue to 'choke' down this cyanide pill as instructed - ugh !!! But, in my case,  I'm not convinced cancer won't return...

Andi  :)~

Cheryl 1
Posts: 42
Joined: Jun 2013

Are you feeling any better by being on tamoxifen now Andi? 

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Since I've switched to taking that pill at night, I do think it has helped for most of the dizziness that I was experiencing...I still feel a bit of 'fogginess' but that passes after being up for a while...haven't experienced any hot flashes or other 'female' side effects - 

Cheryl, are you or are you going to be taking this drug? It seems that everyone has different experiences with the side effects...I'm still 'choking' down this bitter pill everynight...I'm just not happy about taking it...

Thank you,

Andi :)  

JJDS
Posts: 259
Joined: Apr 2013

I am glad that by switching to taking it at night, that you're doing better Andi.

Hugs, JJ

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Happy that you're feeling somewhat better Andi.  Do you think you need to talk to your onco about switching to another hormone blocker? 

Leeza

deeb111
Posts: 139
Joined: May 2011

I take it at around 4pm this way if I get fogged im done with all chores and home from work and I will veg in bed if I need hope this helps you best of luck

grannabeth
Posts: 91
Joined: Apr 2013

Just finished my first whole bottle of Tamoxifen--only 59 more bottles to go! Andi, I, too, am not real happy with taking this drug. It's just so aggravating that I escaped hot flashes during my natural menopause--only now I get the priviledge to experience these lovely hot flashes courtesy of tamoxifen!!  I'm hoping that this side effect might get milder or go away completely after awhile.  I have read about armidex and it has its own SE that don't sound like too much fun either. I think I can deal with the hot flashes better than joint pain, though. 

Sounds like we both started tamoxifen about the same time--so at least we can encourage each other on this journey.

Beth

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

I haven't experienced any hot flashes - just the dizziness & a bit of bone/joint pain...I'm counting down the bottles too...instead of the '99 bottles of beer on the wall' - song - I'm singing 58 more bottles of pills to take, 58 more bottles of pills, take one down and throw it around, 57 more bottles of pills to take... I hate taking pills - yuck !!!

Anyway, Please keep me updated as to how you are doing...

Andi :)

CypressCynthia's picture
CypressCynthia
Posts: 3973
Joined: Oct 2009

Take it at night.  And don't give up.  I was diagnosed with Stage 3 in 1987.  I took tamoxifen for 7 years because no one knew how long to take it back then (they still don't--ha, ha).  Anyway, I believe tamoxifen was responsible for my 18 year remission.  I wish I had taken it 10 years! 

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

I did switch to taking it at night - hasn't helped much with the 'fogginess' in the morning.  I'm going to try to take it in the evening - when I get home from work...I actually quit taking it for a week and a half - I felt like the old me :)   No dizziness/fogginess or bone/joint pain...I know I need to take it - so, I started back a few nights ago...

Andi :)

Lynn Smith
Posts: 1265
Joined: Mar 2011

Andi44- I wonder why the difference with us on the radiation.Maybe tumor size.My tumor was 1/2 centimeter.I always thought it would be at least radiation but was told in the beginning no chemo.

There are 4 in my family with breast cancer.Mom was dx at 21 and lived to be 81.Then my niece, me and last year my sister.So a family history.A aunt and cousin had benign breast tumors. 

It's been 4 years for me.I don't know if I'll ever feel comfortable.I'm afraid if I do feel that way then the beast would come back when I least expect it.Cancer is life changing and I think we feel that way from now on. I try not to talk about it as much now around people.Sometimes I wish I'd never told anyone but family.  

Lynn Smith

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Have you been tested for the brac gene?  It sounds like you have a lot of female members that have had bc...yes, it is life changing - but its good to have a support system...even outside of the family unit...did you have a masectomy or lumpectomy?  And, how long are you to tamoxifen?

Andi  :)

 

Debra Russo's picture
Debra Russo
Posts: 1
Joined: Aug 2013

2013-08-30

Hi Andi,  

i just joined the network and saw your post. I have been on tamoxifen for 4 months now. 

I take it at dinner, although I am not sure of the difference in when you take it. 

i have had some side effects such as extreme hot flashes the first 2 months . 

They seem to have disappeared. Now I feel the foggieness and depression setting in.

its sometimes effects my memory and train of thought. 

I feel as though I leave lost such a great part of my personality . This should be called hormonal torture not therapy.

Anyway, 

just thought I would make my introduction to all who are taking this medication

 

Debra

andi44's picture
andi44
Posts: 154
Joined: Jun 2013

Welcome to the discussion boards...sorry that you're here...I've switched to taking my pills at dinner time - I think that has helped a bit more with my 'fogginess' in the morning...I have been fortunate that I haven't experienced hot flashes...though some days I could use a bit of heat !!!  :) Anyway, keep us updated on you... 

Andi

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