on tamoxifen 1 month, going crazy help

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I've been on tamoxifen for exactly one month. I'm 50 years old and have never been depressed a day in my life (mad, sad, upset but not depressed).  4 days ago I started feeling very anxious, like I oculdn't sit still and very uneasy, like I was going through w/drawals or something and VERY depressed, I don't want to get out of bed. 

Called my dr. this am, he said to stop taking tamox, could take up to 6 weeks to get out of my system, PLEASE tell me it won't take that long I can't stand this feeling. 

Has anyone experienced anything like this before?  I know I will have a newfound respect for people with depression now, I really never understood it before I always felt, just fix what's wrong and get over it but this is debilitating. 

Any help and suggestions greatly appreciated. 

Robyn

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Comments

  • bluesky
    bluesky Member Posts: 389
    edited December 2010

    Hi Robyn,

    Yes I felt the exact same way along with many other SE, 25 pound weight gain, severe depression and anxiety, brain fog, memory loss, nausea, very stiff joints and pain.  I stopped taking after 3 1/2 years, I am worried, I have been off of it for 2 1/2 months, I've heard so many negative things about this drug, but still I am scared to be off it, I may go back on in a month or so, not sure yet.

    All the best to you. 

  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    Bluesky,

    Just hearing other women with similar problems makes me feel better.  I could not cope like this daily, I feel like I want to crawl out of my skin and I am so depressed. Have your symptoms stopped after the 2 1/2 months?  What does your oncologist say, does he want you to take something else instead?  I think my risk is so low I'm going to try and just stay off the meds all together, quality of life has to play a part in this!  Thank you for your reply and my prayers and best wishes to you!

  • bluesky
    bluesky Member Posts: 389
    edited December 2010

    Robyn,

    My oncologist is against me stopping it, so I just went ahead and stopped, I don't want to take other meds, I'm taking DIM a natural remedy which is supposed to block bad estrogen.

    I still don't feel 100% and I've been off the drug for 2 1/2 months, another SE I forgot to mention was light headness which I constantly had while being on tamoxifen, this has almost gone away I still have a little. 

  • janny99
    janny99 Member Posts: 119
    edited December 2010

    I am sorry everyone is feeling this way, but finding comfort in knowing that I'm not alone.  I'm not sure if it's the Tamoxifen, PTSD, being broke, the weight gain, or what that is making me so depressed???  I tried to hold my head up high through surgery, chemo, radiation and now I can hardly hold my head up at all....not sure what to do.  I also quit taking the Tamoxifen, but I might try again right after the Holidays.  I thought maybe it was just a combination of everything and Christmas just topped off the stress that has been building up this past year.  Hang in there gals, we've been through so much, & many people really don't have a clue.  If you're like me, you may have noticed that your support system is dwindling, and that's been tough for me.

  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    janny99,

    When I first looked up the SE of tamox it said hot flashes, mood swings, NO WHERE did it say anxiety, heart racing, severe depression but after reading these boards and talking to my oncologist I am 100% sure it is the tamox.  Yes this has been one hell of a year and Christmas/family problems didn't help but NO reason for the depression other than this med.  The more I read the more I am against this drug.  I just want to be my old self again, I don't know how you gals coped with it for years, one month and I was going nuts! 

    bluesky what is DIM?  I'm not up to date on all of the acronyms! 

    It really does help having you guys to talk to though!!

    Robyn

  • bluesky
    bluesky Member Posts: 389
    edited December 2010

    Hi Robyn,

    I take Estro Balance with DIM by Enzymatic Therapy, you can google it and get more info, I see a Naturopathic Dr. who has helped me detox and found the deficiencies in my body and put me on supplements.  If you believe in natural cures, you need to find a good Naturopathic Dr. who can help you. 

  • nowords
    nowords Member Posts: 423
    edited December 2010

    I had a rough time with Tamoxifen initially...many of the symptoms that you describe. I was not menopausal at diagnosis (age 50). The chemo threw me in to menopause after 4 rounds. It took about 18 months for me to feel like my old self...I think it was Tamoxifen adjustments...but also the after effects of chemo, radiation, surgery, organic depression over the situation and the sudden lack of estrogen...big time. I am now back to feeling like my old self. I strength train twice a week for an hour and stay active most of the other days as well...try and eat well and take some supplements...I think that with my high risk of recurrence...the potential benefits far outweigh the risks...all the things that "could happen" ... I can't worry about what I can not control...I will take the pill...and believe me, I feel your pain...I did not gain 25 pounds, but only because I ate rabbit food...I am now dropping weight again, with the work outs...and can eat more ...I do think Tamoxifen has a bunch of side effects...for some people, but I also think that Cancer is a rough ride on the psyche and the body and some things take time to get through. Make your own decisions and be comfortable with them...we can do everything right and cancer returns...others do nothing and it never returns...I think you need to see what is best for you...I did split the pill and take half in the early evening and half in the mid morning and I did notice that I did not feel as blue...

  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    bluesky is there a website where you buy your supplements?  I wish there was a naturopathic dr. in california someone could recommend to me, I don't want to just go to anyone.  Maybe on this board somewhere? 

  • bluesky
    bluesky Member Posts: 389
    edited December 2010

    Robynnk-Below is the link on DIM, I don't any naturopathic doctors in CA.  Hopefully someone from CA will post soon with a name. 

    http://www.healthsuperstore.com/p-enzymatic-therapy-estrobalance.htm

  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    onc gave me xanax yesterday, it has helped a little but not a lot, just want this tamox out of my body, it's bad 24/7. 

  • Janeluvsdogs
    Janeluvsdogs Member Posts: 242
    edited December 2010

    Robyn,

    Did he give you enough so you can take it every four hours for a few days? Or as long as you need it? Is the amount strong enough?

    I once took one single prescription pill for heaches that had me jumping out of my skin within 24 hours. Then one morning, a week later I woke up and the anxiety was totally gone. I didn't know enough to ask for Xanax. It would have made that week so much better.

    Sending you relaxing thoughts. If I were there I would hold your hand.

  • robynkk
    robynkk Member Posts: 138
    edited December 2010

    Janelovsdogs,

    He gave me 10 pills at .5mg strength.  I took 3 today.  I am married to a man that had back surgery with no pain meds, he is VERY against meds and basically so am I but I'm crawling out of my skin.  I'm going to call him tomorrow and tell him I need more.  The bottle said take ONE a day, well no WAY would that work.  I just wish they could put me to sleep for a week or so till this is all out of my body. My onc receptionist told me to go to the ER today, well there is NO WAY I could sit still there for hours waiting, I feel like they're just pushing me off to someone else. I'm so afraid of getting addicted to this xanax since I've heard horror stories but at this point that's secondary.  Thank you for your good thoughts and support!! 

  • janny99
    janny99 Member Posts: 119
    edited January 2011

    Now that the Holidays are over, I have started taking the Tamoxifen again.  I do agree that perhaps it is going to be an adjustment period for my body and the drug.  I will see my onc in a month, and if I'm not better by February, then I will visit with him about my other options.  Wow, what a ride this cancer journey has been.  I feel blessed in so many ways, and glad that my cancer was caught early...I'm just having a really hard time finding the pure 'joy' that life sometimes brings.

  • hymil
    hymil Member Posts: 826
    edited January 2011

    I was really struggling to cope mentally when i was on tamoxifen, and i was finally told to stop before surgery because of the risk of blood clots. I can honestly say i felt completely better within forty-eight hours of quitting.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    robyn--it does take your  body a few months to ajust to tamoxifen.  Have you asked your doctor if you could take Effexor?  It is an anti-depressant and supposed to be OK to take along with tamoxifen.

    anne

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited January 2011

    Don't know that I can help but it sure is good to read that others are emotional too! Dear god....I decided to start the Tamoxifen while doing radiation because the idea of starting or waiting for one more thing to happen just about did me in....and while I did not feel physically tired throughout the radiation, I was an emotional basket case....crying through the radiation every second day...started hot flashing a week into treatment...I have not felt this emotional since my PMS days! They do not really talk about the 'cry-factor' when they discuss side effects, do they!

    I have been going to the gym and signed on with a personal trainer 2x per week to ensure I do not gain weight and am using this event in my life as a kick start to remove the weight I gained in my 40's...now or never. I am NOT going to gain weight on top of everything else!

    I am also on a sleeping aid (prescribed 16 months ago when my partner of 15 years left..10 months before my diagnosis) but I sooo do not want to be taking anything. I know I need to sleep to heal and know that Tamoxifen can also cause insomnia as well as waking me up more with hot flashes... I know that what I have been prescribed is nonaddictive and is the one the pharmacist said 'yay..good choice;...but for a woman who went off birth control and cystitis meds 4 years ago in order to fix things the natural way....this medication stuff is messing with my head!

    Grieving and healing from a broken heart was interupted by a breast cancer diagnosis and now I have no idea what my emotions are linked to...medication? grief revisited because it is the holidays? the end of my break and knowing I have to return to work on Tuesday?...I was so relaxed until 3 hours ago....now I feel like I did during radiation treatment all over again....

     Any thoughts?

  • robynkk
    robynkk Member Posts: 138
    edited January 2011

    Sandee my heart goes out to you, at this point I'm getting by day by day.  I'm supposed to go back to teaching high school tomorow, NO WAY. I can't go 10 minutes without crying or thumping my legs back and forth like I'm so nervous.  yesteray in hte ER they gave me 4 shots of adovan?  I have some in the pill form, take one eery four hours and it gives me some sleep.  If I can just sleep ththough this and then wake up and the taxmoxifen is out of my body hahhiluuulaiha.  I WILL NEVER GO BACK ON TAMOXIFIEN, EVER.  Quality of life is more important than quantity.  What kid of meds are you on? 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited January 2011

    Add me to the list.  I was fantastic for three weeks.  Week four hit,and whammo.  The depression is crushing.  I am totally in the "what have I done with my life" mode, weepy, etc.  It is the drug, I am 100% clear on that.  It feels synthetic, it's very particular and I've never felt this way before.  I hope it doesn't worsen, I can't function like this every day.

    I totally understand what is said here about the "pure joy" factor, I'm a bit numb.

    I also refuse to add Effexor to the mix.  Call it a personal prejudice, but my SIL gained 60 lbs on that drug.  Forget it, no way.

  • robynkk
    robynkk Member Posts: 138
    edited January 2011

    I've been off the tamx for 11 days now and have no plans to go back on it.  Been on Paxil for 5 days, sent to the ER yersteray because I was craling out of my skin and my rading with cepression, they gave me a 4 dose shot of adavan? and some to take h ome, SO i'vee veen on he adavan adn paxil, hoping in a week or so it will allbe out and i can wene off this paxil and adovn.  I've had friiends bring me xaxax and valium which I haven't taken but no WAY IN HELL will I go baco on TAMOXOFEN, NO MATTER WHAT THEY TRY TO ADD TO IT, I''LL TAKE MY CHNCES, I CaN' L IVE ;LIKE THIS

    Q  BEST WISHES TO ALL OF YOU!

  • hymil
    hymil Member Posts: 826
    edited January 2011

    Hang in there, Robyn. It WILL improve.

  • bellapazza
    bellapazza Member Posts: 34
    edited January 2011

    I have had depression most of my life and am already on antidepressants.  I am also on Tamoxifen now.  I would say, I can't even tell anymore why I am so severely depressed, but I would like someone to prove to me that my depression isn't worse on Tamoxifen.

    Also, I have no libido.  None.  And that in and of itself is killing me emotionally.  I'm 52, and intimacy ... well I was looking forward to that in my 50s.  My husband and I have been separated for a long time.  I want a new relationship and at this point feel so depressed I can't see.

    There is a part of me that says quality of life.  Yes, depression is real, and I believe it can clearly be exacerbated by the Tamoxifen.

    I'd say for those who got it from the Tamoxifen (and I realize everyone is different ... everyone here) there are indeed options and I've heard many good things about Effexor.

    But I understand wanting to go off of this, and my oncologist would be furious with me.  I KNOW I need it and yet ... I am so, so sad right now, more depressed than I have been in my life.

    Hugs to all of you.  Never, ever, did I think this is what would happen ... all of this other misery.

    Everyone hang in there.  There is indeed a part of me that wants off of this drug.

    Love,

    Bella

  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited January 2011

    did you try taking it at different times of the day? split in half ..half in the am and half in th e pm? I have been doing that for three days and i seems to be making a difference...only woke up warm once last night

  • hymil
    hymil Member Posts: 826
    edited January 2011

    Anyone heard from Robyn since her last post a week ago? Robyn, do let us know how you're getting on?

  • robynkk
    robynkk Member Posts: 138
    edited January 2011

    I am so sorry to have disappeared on all of you.  I had a really hard time on that tamox, I will NEVER take it again and it took a while to get out of my system.  After going to the emergency room and having 2 shots of Adavan then taking it for about 3 weeks I am MUCH better.  Back to work teaching and feeling very good.  I see my oncologist soon but am going to tell him I'm not going back on it.  I am very skeptical to go on ANY drug after that reaction.  Thank you for all of your support and help it got me through a very difficult time!! 

  • robynkk
    robynkk Member Posts: 138
    edited January 2011

    I just reread my old post, BOY was I out of it, I couldn't even spell, I don't know how I could even type! 

  • robynkk
    robynkk Member Posts: 138
    edited January 2011

    Bella,

    What does your oncologist say about the depression?  I can honestly say I've never suffered from depression except on Tamoxifen but it is definately REAL.  It made me truly appreciate what people go through.  I didn't want to get out of bed, I didn't want to shower, I wanted to die actually and that is sooooo not me.  I too realize that everyone is effected by every drug differently but be deligent in making your doctors work with you to find the right meds to get your life back on track!  Please keep us posted!!  Robyn

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2011

    (((((robnynkk)))))) I wish I had seen this thread sooner. 

    Here is a golden example of exactly how closely Tamoxifen is tied to depression: they are actually studying it as an anti-manic agent in bipolar disorder.

    I felt some depression but not that much. Mostly, I felt very raw on it, as though I would jump at anything. Very hysterical. 

    I also found that Tamoxifen gave me PMS of the worst kind. I have a severe mood disorder (more mania than anything else) and see a doctor for that, who told me that, in his experience, his bipolar patients seem to have a particularly horrendous experience with hormone therapy, whether it be the pill, Lupron or Tamoxifen. I would assume the same would be true with depression. So bellapazza, that may be what happened to you.

    I spent most of 2010 fighting to stay on the Tamoxifen. I kept going on and off it to see if I would experience different or fewer SEs the next time around. Then, I realized that a person who does the same thing over and over again expecting different results isn't crazy but stupid. So I stopped. The stakes are enormous and it was a very hard decision. It may cost me my life, and I am prepared for that now and am at peace with it because the trade-off for me is the opportunity to treat my comorbidity without chemical sabotage and live a happy, productive --if much shorter-- life. For someone else, staying on it at all costs may be the right answer. 

    There is no single answer that fits everyone.

  • travelgal6979
    travelgal6979 Member Posts: 160
    edited February 2011

    Wow...I am SO glad I found this board.  I too was on Tamox and will never, ever take it again.  The SE's were just awful.  I can't even explain to people how terrible the SE's were.  They started about 1 month into taking it.  The only way I can describe it is like I had the flu.  I was SO wiped out, I could barely get out of bed and get dressed.  I felt like this every day.  My mood felt "dead".  I went to my onc., told her how I felt, and she said that bad SE's can happen but are rare.  That's why so many people and dr's think there aren't any SE's on it.  She said that this rare SE is severe depression.  I'm a pretty upbeat person so I was really surprised to hear my onc. tell me this.  She suggested I try taking Effexor, which I did and then had TERRIBLE constipation while taking that.  I mean, I wasn't going at all for over a month.  I tried eating tons of fruit, fiber, drinking tons water and nothing helped.  Personally, I don't think the Effexor was going to help anyway.   I finally decided that my quality of life is more important and I'm not taking the Tamox.  My best wishes to all you gals.

  • robynkk
    robynkk Member Posts: 138
    edited February 2011

    1Athena1

    Thank you for your post.  It is so refreshing to see others have gone thru similar symptoms.  I have an appt. w/my oncologist on Feb. 15th and I KNOW he is going to try to talk me into taking SOMETHING but after my experience on tamox I, like you, have decided to eliminate the meds altogether!  I am trying to eat right, get my hormones in balance, exercise and live well.  Quality of life for me is more important than quantity, especially given what I went through.  I wish you well and will add you to my prayers.  xxoo

  • robynkk
    robynkk Member Posts: 138
    edited February 2011

    travelgal,

    My SE hit me almost exactly after one month also.  Thank you for the tip on Efexor, I really think I am going to try to NOT take any more meds.  My cancer was Stage 2 and they said they got it ALL and I didn't even need chemo or radiation so why put myself through the SE's of these meds.  I am a teacher, have been for a long time and woke up one day on tamox and thought, did I even call a sub for my classes today?  I didn't even care and went back to sleep.  That is sooooo not me, the depression was debilitating.  My oncologist only warned me about "hot flashes and mood swings" well wanting to DIE is not a mood swing! :)  I wish you the best, keep us posted on your progress!  Robyn

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