Tamoxifen and EXTREME mood disturbances -- HELP!

Adelaide77

Hi. I am 32, had a BMX in November 2012, no chemo. Just started tamoxifen about 3 weeks ago. It is making me CRAZY--extreme irritability, anger, suicidal thoughts and urges, huge mood swings, panic attacks. I've struggled with anxiety and depression for 15 years, so some of this is familiar terrain to me, but the tamoxifen has taken it to a whole new level. I've never had full-blown panic attacks until I started the tamoxifen, and while I've struggled with suicidal thoughts before, I've never had urges to hurt myself like I have during the past week and a half or so.

I called my oncologist, and also my PCP (who has traditionally overseen my antidepressants). Oncologist said to stop tamox for 2 weeks, so we can be certain that it is in fact the tamox causing the mood issues. I was on a low-dose of prozac before (which I stopped because of the tamox), so perhaps it is a compounding effect of coming off the prozac (although I did taper off) and adding the tamox. But I really do think the tamox is to blame since this is unlike ANYTHING I have ever felt.

After the 2 weeks, my guess is they will try to put me back on but also with a compatible antidepressant. I know a lot of women have had good results with Effexor, and that is the one my oncologist seemed to think would be best. My PCP, however, is really pushing for Celexa. I'd love to hear the good & the bad from those of you who have tried either Effexor or Celexa. One concern I have is that, whichever antidepressant I end up on, i will probably need to wean off of it in a few months for my exchange surgery since neither seems to be a good mix with NSAIDs or narcotic pain meds (both of which I am anticipating needing).

Are there any other solutions I should be considering? Can I just say "screw it" and not take the tamox? I've made so many changes to my lifestyle (diet, exercise, lower chemical exposure with beauty products & cleaning products etc.) since my diagnosis that I almost just want to not take the tamox and do what I can to put my body in the best place possible to fight this on its own. My onco score (if it's relevant) was 12, with 8% average rate of distant recurence. How do I figure out what my risk of recurrence is WITHOUT the tamox? If an antidepressant doesn't help, I seriously doubt I will survive 5 years on this medication; I am terrified for my safety on tamoxifen.

edwards750

Wow Adelaide you are getting the brunt of the SEs from Tamoxifen. I am on the same drug but have was just recently changed from Arimidex a few months ago. I have osteoporsis and my ONC didnt want to risk further problems with that given Arimidex attacks the bones and Tamoxifen actually builds up the bones. These meds are given based on your stage of cancer primarily. I have not had any SEs save for hot flashes every now and then. Weight gain is another complaint but my few pounds is due to overeating from anxiety. Your BS and ONC can and should tell you the risk if you stop taking it. I had the Oncotype test done too(my score was 11). BTW on the Oncotype report it also tells you what the percentages are with or without the meds. You have a very low score which is encouraging; 8% is very low as well. We all know there are no guarantees though so you are taking a chance stopping the drug however, given the horrific SEs you are experiencing I cant imagine your ONC not switching you to another drug. There are others. I have been blessed not to have issues with Arimidex or Tamoxifen so far but I can tell you if I was going through what you are at such a young age I would be in my ONC office talking about alternatives. Good luck. You dont have to endure this. Not every woman reacts the same to the drug. It isnt a one size, fits all med. Good luck. Talk to your ONC about something else.

Adelaide77

I have osteoporosis too. (Shocking for age 32, right?) Just found out last week. So I know there is some benefit on the bone health front from the tamoxifen, which makes it attractive in that light if I can find a way to take it without all the other side effects.

Ugh. BC sucks.

Thanks for the response, edwards750. It gives me confidence to be more vocal with my oncologist. I ended up just talking to her nurse on the phone yesterday, but I think I'm going to push for a face-to-face before making the next treatment decision in 2 weeks.

1Athena1

Hello, Adelaide,

I am really sorry to hear about your horrible SEs. They are very common, and can be especially debilitating in people with pre-existing mood and anxiety disorders.

Medications work in individual ways for different people so no one can give you an opinion on wiether Celexa or Effexor is better for you based on how they reacted. Your brain chemistry and metabolism are unique to you. However, here are a few observations that you could ask your doctors about:

--Since Celexa is, like Prozac, an SSRI, it could have a similar effect for you. If you did well on one SSRI, then there is a good chance that you might to well on another. Effexor is a different kind of anti-depressant. Oncologists like to use it with Tamoxifen because it may help with hot flashes. However, that is different from whether it will help you with moods.

--If you are having mood swings with panic, it is worth asking whether a mood stabilizer is warranted.

--You mention that you are having panic. There are some SSRIs which are commonly and effectively used to control anxiety in addition to depression. One is Lexapro (Celexa's "twin"). The other is Paxil, also an SSRI. (There are other anti-anxiety meds, of course.)

--I know of no contraindication regarding anti-depressants and surgery, so do not worry about that. The most that would happen is that you might have to stop taking a med for one night. As long as the docs know what you are on they can easily control things.

Again, I am really sorry for what you are experiencing. Tamox. almost did me in, although my SEs were a bit different. I am really glad that your doctors are listening to you, though.

my3sunz42

Adelaide - Wow ... I had the exact same experience w/Tamox & history of depression. You name it, suicidal thoughts, mood swings, panic attacks ... it was TERRIFYING especially since I knew what depression was all about. After a visit with my onco & a phsycological nurse practioner, I gradually stopped my Paxil (was interferring w/Tamox anyway) and added a new anti-depressant called Effexor. I started out at 25 mg of Effexor and have been at 75mg daily since September ... I'm a new woman :-) Unfortunately you're not alone - but fortunately, there is help. 

JenniferLeigh

Dear Adelaide,

I can really relate to your post. My heart goes out to you. I have been taking the Tamoxifen for 11months, and I experienced extreme anxiety and depression too. I tried Effexor and it helped with the hot flashes for a few months, then it started causing frequent shaking, cold chills, a lot of weight gain, anxiety, and increased suicidal thoughts.  Also, the withdrawals while trying to stop the Effexor, were frightening.  Be sure to read some of the posts about getting off Effexor, its a horrible experience!  Plus, there are even some studies reporting Effexor could mildly interfere with the enzyme needed to break down the Tamoxifen. I am still searching for medicines to better control my Depression and Anxiety which easily flies off the charts.  Everything I have read says that SSRI's can interfere, and I really do not want to take anything that makes the Tamoxifen less effective. Right now, I am taking a low dose of a very old class of antidepressant called Elavil. It helps a lot, especially with sleep, and, so far, I have not found any reports of interactions with the Tamoxifen.  Hope this helps. Hang in there and don't give up on the Tamoxifen, it is really supposed to help. 

PinchGrowInch

I am a bit of a cautionary tale. I needed to stop Tegretol (carbamazepine) to prepare for Tamoxifen since they are not complementary. However, I didn't know that I had to stop it gradually, and I didn't get any guidance from my medical team. I quit cold on March 16, and things started getting peculiar bit by bit, with dry mouth, vision change, trouble typing on my iPhone screen, and severe intestinal distress. I started to get tired and had insomnia, but I attributed it to radiation. Finally I started hyperventilating every night, and I was dizzy and stumbling when I walked.

I have been in the emergency room four of the last six nights with seizures and spasms. I've never had seizures before. Now I have a slight speech impediment, a a little vertigo, and a little limp. I am hopeful that these side effects diminish.

2 things:

1. Make sure you get very specific advice about med changes. Make your doctors agree on a very specific titration or half life plan.

2. If you have to go to the hospital, make sure you make it VERY CLEAR that you are a cancer patient so you will be treated in a cancer unit or general hospital population -- if not, the admit staff may look at your record and never get past any behavioral disorders they see. I got locked in a 'safe room' with none of my personal effects, like my phone and my cancer care meds, with no toilet or water. BE CAREFUL AND MAKE THE ADMIT REASON VERY CLEAR: YOU ARE A CANCER PATIENT GOING THROUGH A MEDICATION ADJUSTMENT.

I'll let you know how my civil rights lawsuit ends...

shelleym1

Tamoxifen cuts your recurrence risk in half. So if your recur score is 8%, then it's 16% without Tamoxifen.

lyzzysmom

Oh PinchGrowinch. What a HORRIBLE experience. I hope you win your lawsuit!!

I stopped taking tamoxifen due to terrible insomnia in spite of sleeping pills. I also found it difficult to concentrate enough to do my job.

JenniferLeigh, I was actually thinking about posting a thread asking about problems with effexor when I saw this thread.

Five weeks ago my primary care put me on an Effexor generic to get me ready to try the tamoxifen again. Since then I have barely felt like getting out of bed other than to drag myself to the office 2 days a week and work a third day at home (sometimes in bed!). I feel worse than with the tamoxifen although I am now getting some sleep. Prior to this I was going to the gym regularly but now I feel so physically tired, and dizzy when I stand up. I notice myself moving my legs and feet a lot when sitting. Normally I do not fidget a lot. I am concerned as years ago the doc tried me on 3 different SSRIs due to stress from being on call at night. I could not take any of them, all sorts of weird effects and one made me feel angry for no reason, and of course the brain zaps when I stopped them. I am trying to give the effexor a chance but worried that I may have to stop this too. I will keep at it for a couple more weeks then see my doc. She is a great doc but never mentioned that it can be one of the worst to withdraw from. The only thing I have ever found that I can take is a low dose lorazepam that helps with sleep and relaxation (unless I am on tamoxifen). Prior to starting the effexor I had made my peace with stopping the tamoxifen and was feeling better. I know the docs have my best interest at heart, but honestly I feel like I am taking these pills for them not me as I can live with the risk and just want some QOL.

Thank god my employer allows me to work part time since BC and keep my insurance. Otherwise I would be a complete mess.

The one good thing is that since I started the effexor I have lost 5 pounds as I lost my appetite...