Psycho After Tamoxifen

SandyAust · April 2011

Has this happened to anyone else? I guess not many people would be reading here after finishing their tamoxifen but it can't hurt to ask.

Breast cancer at 36. Chemo, surgery etc and then five years of Tamoxifn. I have been off it now for more than a year, maybe 18 months. Periods have been strange at times. Bad PMS. I had a test for menopause about 6 months ago, not menopausal. Earlier this year have slumped into at times a really severe depression. My son has been having some trouble at school, but given some other things in life this has been way out of proportion.

I don't know, maybe it is just back to normal PMS and the depression is due to reaching my limit of crappy things to deal with.

My geneticist has suggested ditching the ovaries due to Ovarian Cancer risk and I am thinking maybe this will get the mood issues over and done with. I have just turned 43.

Any thoughts ladies?

Sandy

motherofpatient · April 2011

I am researching the tamox v AI issue since my 43 yr old daughter is facing this with ER,PR and HER2+++ as well as ER,PR+ and HER2- at the same time. As for the side effects of meno with each, I have read that anti depressants can help - but must not use Prozac and a few others. I googled depression, BC treatments, etc and found helpful info to discuss with the doctors.

tcam3472 · April 2011

Hi Sandy,

I am also 43 and am having horrible side effects from the tamoxifen. I cry on a dime..very emotional and quick to temper as well as other side effects such as thinning hair,stomach ache, upset stomach and very low energy. I am truly getting to the point where this medication is going to be trashed. I have been on the tamox since Sept 2010, but was taken off of it March 2, 2011..after about a week I felt like my happy self again but I started again March 21, 2011 and I feel horrible again. I'm not receiving very much help (damn Canadian system). The oncologist took me off work. I've been off for a week and 1/2 but this past week he was on vacation so his nurse advised that maybe my doctor can prescribe a medication to counter the effects of tamox. So off I go to my family doctor who tells me that its the "oncologist" who should presribe because its the effects of the tamoxifen. So I wait until the oncologist gets back from vacation. The end result? His nurse called and said she spoke to the oncologist who said to go see my family physician..?!! I really don't understand. Its not like I've seen the oncologist too much. I only saw him twice since my diagnosis in Feb 26, 2010 . For me I am getting closer every minute to getting rid of this medication. That way within a week I can feel "normal" and get back to work and resume life. I HATE doctors

I hope your gettng more support then I am. This is a known side effect of the tamoxifen. Its just not as common as stomach aches.

Ellie1959 · April 2011

I don't know if this is helpful or not, but I take Cymbalta 30 mg. as well as tamoxifen. I've taken holidays from it but my Dr.(onc) really wants me to finish out my 5 years. I am so achey but emotionally pretty good most of the time which I attribute to the Cymbalta. Maybe it would be helpful to look into this.....,

SandyAust · April 2011

Hi Tammy,

Sorry you are having such a hard time. My problem is actually the opposite. My hormones, moods etc were more stable on Tamoxifen. I actually had no side effects, except a bit of nausea in the first few weeks.

The problems have occurred after finishing five years of treatment. I know I had bad PMS when I was younger. Now it seems to be back with a vengeance. I also have regular bouts of really bad thrush. Is it an estrogen rush? Menopause? Life?

I hope you can get some suport too.

Sandy

Anonymous · April 2011

Sandy--so sorry to hear of your struggles. But I wanted to let you know "ditching the ovaries" does NOT get rid of the emotional issues. In fact, early on it gets a lot worse! (beleive me, I know from personal experience! I took tamox for 5 years with relatively minor SEs, but also have been thru a TAH/BSO and immediate surgical menopause) PM me if you'd like to talk!

Anne

SandyAust · April 2011

Just to clarify.

My symptoms have occurred after STOPPING tamoxifen. I had no real problems while on Tamoxifen.

Anyone else?

SandyAust · April 2011

Thanks Anne. That's what I was worried about. I did post about this a few months back. I know it might be pretty rough to start with, but did you find things settled down after a while?

LtotheK · April 2011

Between your age at diagnosis, the fact you did chemo, then 5 years of Tamoxifen, my doctor would describe that as "within range" of possibilities. Chemo limited your ovarian function, and Tamoxifen can halt periods, but I've also read that as a low-dose chemo, can change the hormonal wiring for good. Not everyone goes entirely back to normal in regard to SEs after Tamoxifen--you can read that at length on these boards.

Why not Lupron? I'm so uninclined for additional surgery. I don't know your stage or grade, but at your age (I was diagnosed at 39, so I hear you), the concern is also for heart and bone health, both of which will be affected by removal of the ovaries.

I think the next couple of years will show that while total suppression of the ovaries might be good for breast cancer, it has serious implications for other life-threatening health issues (and I consider osteoporosis a life-threatening illness, it killed my grandmother). New research on the AIs show they don't have an edge in all cases up against Tamox, and they behave a bit more like an oophrectomy in terms of what they do to your body (halt estrogen).

Sadly, the research really isn't there on the diagnosed under 40 set. Be vigilant in asking about your age bracket if any new info is out there--we get lumped into what is considered right for those post-meno upon diagnosis. And, as I'm learning, it's really a separate disease.

J9W · April 2011

Sandy, I ditched the Tamoxifen. I did so because of very bad bone and joint pain; I've been tamox free since October 2010. And, I didn't realize it while on it, but it caused me to be depressed too. I had never had that experience before but since quitting the drug, I don't have that issue to deal with any more. Now I do a six month split mammo/mri and just had a nuclear bone scan. I'd rather do these three tests every year than be on that drug (or any drug for that matter). J9

LtotheK · April 2011

"Now I do a six month split mammo/mri and just had a nuclear bone scan. I'd rather do these three tests every year than be on that drug (or any drug for that matter)."

J9, I just want readers to understand that you can't trade Tamox or an AI for "better" screening. Rigorous post-BC follow up for all high risk patients should include MRI, mammography and ultrasound. Bone scans are not done by all hospitals for early stage BC.

Additionally, Tamoxifen is intended to stop a cancer before it starts, as a preventative. A small met is still a met when detectable.

Totally understand why people would ditch the med, and I respect that. If I were experiencing what our original poster is, I might, too. But I just wanted people to understand testing is not an alternative.

Chickadee · April 2011

Sandyaust......you may be entering peri menopause......that slow changeover to menopause.

As they say, getting old ain't for sissies!

tcam3472 · April 2011

Hi Sandy,

I'm not a doctor but it sounds like your body adjusted to the tamoxifen and now your body is having a hard time adjusting once again now that your off of it? I hope you feel better soon. As for me the doctor took me off the tamoxifen...again..

tcam3472 · April 2011

Does anyone know how long it takes tamoxifen to get "out" of your body once you stop taking it?

robynkk · May 2011

Tammy it took me 2 weeks for it to get out of my system and I was only on it a month. I thought I was going crazy on it.

JenXX · June 2011

I don't know about the depression aspect (I've been dealing with depression separately long before my BC) but I had a VERY ODD reaction to cessation of Tamox - my libido went through the roof, which was very awkward for me since I wasn't dating anyone at the time Undecided

What has helped with my ongoing depression and joint pain is Pristiq and what helps with the low energy stuff is Nuvigil, but it's hard to get that covered by your health insurance.

nellingson · August 2017

I wish we could talk ~ I feel just like you!!! Makes me feel like I'm not crazy reading these pist

Lula73 · August 2017

hi Sandy- I took tamoxifen for 2.5 months and here I am 3 months after stopping itwith a laundry list of symptoms similar to what you describe. Went to MO, laid out all the symptoms and his response was sounds like too much estrogen. How to fix it? Wait it out if tamoxifen caused a build up of estrogen in the bloodstream. Eventually the liver will metabolize what the cells don't take up. And so we wait-with mood swings, periods that don't look at the calendar before arriving, acne from hell, bloating, fatigue, sleep issues, low sex drive, weight gain, hair loss (which has finally stopped) and memory issues (like can't remember what the next word was you we're going to say in a conversation). So how long to wait for full resolution? Perhaps the same amount of time you were on it. Maybe less but maybe more. No one knows. Although my MO did say that tamoxifen is gone from your bloodstream within about a day or so. Unfortunately the same can't be said for the changes blocking the estrogen uptake caused. My ovaries are coming out in the next few months and I'll try an AI at that point. Hopefully with less issues.

Good luck & know that there are many of us paddling this same boat right next to you!

pupmom · August 2017

Wow, I've been on Tamoxifen for 2 years. The only symptom I (had) was hot flashes. Those are pretty much gone now. We're all different.

Psycho After Tamoxifen

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