Topic: Tamoxifen, fatigue and emotional side effects

Jan 8, 2009 08:01 PM pabbie wrote:

Hi-I have been on tamoxifen since Aug. 2008. I started at 10mg and titrated up to 20 mg. over a months time. I have had long-term fatigue since my first cancer in 1999-chemo & radiation. My doc put me on celexa; I think she thought it was depression. My dr got sick of me complaining to her (I think) & she referred me to a psychiatrist in which I started taking clonazapem for anxiety and insomnia. Fast forward Feb. 2008, breast cancer dx-Surgery, radiation & tamoxifen. My psychiatrist has added a mood stabilizer to the mix. My onc said clonozapem works well for the anxiety of tamoxifen. I tried Femara and Arimidex (alot of gastrintestinal upset, joint pain, and too much anxiety). Tamoxifen s/e's:hot flashes, GI upset (a little better), anxiety, and hair loss. I have to make the tamoxifen work because I didn't do the chemo. I would suggest seeing a psychiatrist; perhaps that deals with cancer patients. Good luck and take care of yourself.

Jan 8, 2009 10:24 PM phoenixrising wrote:

I forgot to give you this link.  As you will see depression is listed at the bottom of the list, but it's still listed.  You could print it off for your onc.

www.bccancer.bc.ca/HPI/DrugDat...

Jan 14, 2009 07:01 PM, edited Jan 14, 2009 07:02 PM by karol61

Christyz,

Sorry that you have sadness,depression and irritability. 

Jan 15, 2009 08:53 AM christyz wrote:

Hi,  Karol,

Thanks for input.  Yes, I am definitely in peri-menopause.  However, I think the Tamoxifen might be making it worse.  I am only 42 years old, so I don't think I'm in full-blown menopause yet.  The problem is that it's hard to know how much of it is the drug, and how much of it is other stuff.  But, thanks for your reply, I appreciate the ideas.

Jan 21, 2009 09:54 PM Hogtied wrote:

I have definitely noticed that the hot flashes are less severe when I take Tamox in the evenings. I mentioned this to my oncologist and she said she's heard others say that playing with time of day you take your dose can change your hot flashes. Also, been on Tamox for about 1-1/2 years and the hot flashes have definitely lessened since the beginning. I get an anxious feeling right before I get a hot flash. Anyone else have these "auras"?

 Chemo caused my periods to stop, and they haven't started back up since. Vaginal dryness and reduced libido has been a problem since chemo. I refuse to use any hormones, so Estrace is out, but Astroglide works very nicely. As for the question of reduced libido, there seems to be a use it or lose it effect. Just go for it (I've kind of put it on my to do list) and maybe you'll find that the emotional intimacy is enough on those days when your libido is low. 

I hit on this forum because I've been having quite a lot of anxiety. The feeling is almost like a little mini panic attack, with a nervous feeling in my stomach (like you feel when you're about to perform or give a speech). It's been getting worse over time. It's not enough for me to take additional medication (I'd have to be almost non functional before I'd consider it, I think) but it's interesting to see that it could be the tamox. Any ideas on reducing the anxiety? 

Jan 21, 2009 10:57 PM karol61 wrote:

Hi Hogtied,

Yes, my hot flashes have lessened and I do get an "aura" or warning before I have them.

I never thought I'd ever use any hormones but i used astroglide,+ replens and the dryness was still there and even caused pain.  Now I use Estrace cream,  a tiny bit of it. it has helped a lot.

For anxiety, which probably is a Tamox side effect,I do relaxation breathing, yoga,walk, draw and paint.

Hope this helps you. 

Feb 17, 2009 10:02 PM Valeriex wrote:

I have finished my 5 years of tamoxifen.  What really upsets me is that the side effects of tamoxifen have been attributed to menopause.  Well.......the menopause was caused by chemo.  So whether it is chemo, tamoxifen, whatever, it certainly was caused by my breast cancer treatments!  So help me doctor!  I have friends that are my age and going through menopause naturally.  Some take hormones, some don't.  But the complaints from them aren't what I had gone through.  I am tired of complaining.  I know that I will never have my old life back.  I know this.  But I would sure like to feel my concentration is somewhat improved.  Or the sex drive.  Or the joint achiness.  I am hoping and waiting to see the improvement.  Already a bit of improvement in the concentration.  My last day of tamoxifen was mid-Jan.  We will see......

Feb 26, 2009 10:32 AM, edited Feb 26, 2009 10:32 AM by Donna136

My doctor gave me a 6 months holiday on a half dose of Tamoxifen (1 took 20mg every other day) to give me a rest from side-effects, it took a couple of months to feel the effects but my periods came back and I started to feel better.  Have been back on the full dose since November and the side-effects are intensifying - night sweats, foggy brain, anxiety, tiredness.  I'm meditating and trying hard to be positive but it's not always easy.  Sometimes I feel like just stopping!  But before I do, I'm thinking of trying natural progesterone cream in conjunction with the tamox - has anyone else tried this?

Apr 8, 2009 06:33 PM Nancyab wrote:

I certainly am glad to see that I am not the only one struggling with this stuff! I've been on it since Aug 07 with Effexor and I can tell you like clockwork 10 minutes after I take it I have a hot flash. I estimate I have 10 to 15 day, and my nights are miserable. I am so fatigued and depressed. I cry alot and I can't be intimate with my husband because it is so painful. I have tried everything from ky to Replens nothing helps. My onc. says going off Tamoxifen is not an option. I see her again in May and like tnokes I feel like chucking it.

Feb 2, 2010 05:51 PM operagirl wrote:

I'm not sure if anyone is on this thread any longer.  But just in case...I just started Tam 6 weeks ago & the side effects have come in with a bang.  Dryness, hot flashes, anxiety, & bladder issues.  I was told all of these are part of the deal.  Anyone have experience seeing a naturalpathic (sp?) doc?  I'd really like to stay off all extra meds if at all possible.  Doc said to try Primrose oil.  I started it yesterday, hopefully, it will give me relief. I liked the suggestion to split the pill up.  I will definitely give that a try. 

Feb 7, 2010 10:52 AM rebeccacollins1 wrote:

HI

I have been on tamoxifen for 18 months now and I think I have had side effects.  My periods had stopped during chemo but returned a year into the tamoxifin and the vaginal dryness improved.  I also experienced alot of fatigue and breathlessness which turned out to be an underactive thyroid maybe brought on by the tamoxifin or maybe not, no-one seems to know, but I am now on thyroxine which took a while to get the right level for me but now I feel great most of the time and the thyroxine is only replacing the thyroid I am missing, so its quite a natural drug to take.  Good luck and stay well.

Feb 7, 2010 04:38 PM Psalm121 wrote:

Hi PinkRibbonGirl!

Well, so far, I'm doing okay with the Tamoxifen...and I'm so surprised! After initially being so apprehensive and hesitant, I started taking it and this is my 5th day.  Not a great reference range, I know.  But...I, like you, was expecting hot flashes to be sooo much worse with the Tamoxifen.  I started the Vitamin E on 2-2-10 and then the Tamoxifen on 2-3-10 (I had to wait for it to be delivered to my pharmacy). 

I, too have always been one to be freezing when everyone else is comfortable.  My husband used to say I wasn't comfortable unless it was at least 80 degrees outside!  You are so right, I really dreaded adding more drugs to my system having just finished Cytoxan/Taxotere chemo on Jan. 7th.  But, I also knew that the Tamoxifen will be my little mini-shield against a recurrence and/or a cancer in opposite breast.  With that in mind, I decided to call Tamoxifen "Vitamin T" and think really positive thoughts every time I take it!  My Onc prescribed 10 mg tabs for me to take twice daily...he said it didn't matter when I took them, just as long as I take 20 mg. daily.  So I take one 10 mg tab in the a.m. and another in the p.m.  He said I could adjust the when I take it part to suit my needs/responses to the medicine.  I drink a big glass of ice-water everytime I take it, too.  My hot flashes are NOT worse, if anything, during the day they are milder.  I still have them through the night, but not as frequent or severe. 

I see you were diagnosed in July 2009, same as me....did you have a mastectomy?  So nice to hear from you....I've been craving a talk with someone who totally gets all this bc stuff.  Looking forward to hearing from you.

Feb 8, 2010 01:17 PM pinkribbongirl wrote:

Hi Psalm121,

I was diagnosed in July of 09, My husband actually found the lump months before, but I just sort of put it off about 8 months until my yearly check up with the gyno.  Pretty dumb move on my part considering my mom had breast cancer 15 years ago!!  I just didn't think it really could be, after all I'm just 39 years old:)  My gyno said that it usually hits 10 years sooner in the next generation.  My mom found out when she was 49, and myself at 39, so that was pretty weird.  I actually opted to do a double mastectomy with immediate reconstruction.  It went pretty good...more soreness than I expected to have to a longer period of time.  My surgeon told me that some women just take Tylenol after surgery and are fine, so I felt like a total wimp when that didn't cut it for me!!  I had some other stuff that went along with it, when we went to see my Onco. for the first time, he said that we could start chemo once we found out what the spot on my lung was.  This threw us for a loop, cause this is the first we had heard anything of this.  Anyway we did a pet scan, and it showed the spot in my lung, and also my ovaries were hot.  This really freaked us out.  They did an ultrasound of the ovaries, and it came out ok, then a biopsy of the lung and it showed to be some sort on infection.  Needless to say, we were very relieved to hear this, but they still had to find out what kind of infection it was before they could start chemo.  They wanted to go in and do another lung biopsy, but my family dr said no way to soon and to hard on my body.  So he thought we should go to Mayo.  So we went to Mayo, and they did surgery and removed the spot, and found out that it was Valley Fever from being in Arizona!!  So, after all of that I was finally able to start chemo.  I did 4 A/C, then 4 Taxol.  For me the Taxol was alot harder on me than the A/C.  After my first Taxol Neulasta, I saw my family dr, and he thought I looked terrible, so he wanted me to have my blood drawn, and my white count was 33,000.  So he had me go up to Mayo, and they brought in a Hematologist, and he said I had CML, a form of Leukemia!!  Anyway, to make a very long story short, we found out the next day that it was just a combo of the two drugs together.  My counts hadn't dropped as much with the Taxol, as with the A/C, so I didn't have to have the Neulasta shot anymore.

I am scheduled to have my exchange surgery on the 8th of March.  I'm a little nervous about this as I hate to subject my body to more, but on the other hand, I'm excited to get these hard rocks out of here!!!  Am hoping for great results with the implants.  Hopefully not too high of expectations though!  I have the same PS as my mom did, and she looks great!

I will ask my Onco if there's anything to take for the body aches when I see her on Thursday!!

Stay in touch, pinkribbongirl

Feb 8, 2010 03:55 PM pinkribbongirl wrote:

Psalm121...I sent you a private message!

Mar 1, 2010 02:19 PM seagan wrote:

I highly recommend acupuncture for Tamoxifen SEs, esp. hot flashes but also that odd irritability and fatigue I hear so many women talk about (and that I struggle with, too).  If you have access to an affordable, reputable acupuncturist, it's definitely worth a try, though keep in mind that it may take a few treatments to notice a difference.

My hot flashes, while never bad, noticeably diminish when I'm doing acupuncture once/week. And, equally valuable, it relaxes me more deeply than anything else I've tried.