Tamoxifen often causes insomnia/depression. Did they warn you?
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Sonyasen, I am so sad to hear the tamofifen wreaked your job. How sre you doing now? Are you still on it?
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I was never told and I am bipolar and have panic disorder anyway. It really angers me that we have to know everything because the doctors don't want to tell you. I had the worst manic episode ever two years ago and it took months to rein it in. I also had terrible depression after I had been stable for years. I ended up inpatient in a crisis unit because I was suicidal. It was terrible.
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Hi everyone...one of my pet peeves is when docs who prescribe these powerful drugs do not discuss potential serious side effects. Yes we need to be our own advocates too but the medical profession also has an obligation. Do not let them off the hook! Good luck to all navigating this complicated disease.
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OMG! Justamy. That is really egregiously wrong. They knew that with taking tamoxifen, there was a very strong risk for you with your history of Bipolar and Anxiety disorders of severe mental health side effects. Those careless and sloppy doctors should be sued. There is no excuse for that kind of irresponsible medical care. I bet that happens to women all the time. Dtad is right, don't let the SOBs off the hook. At the very least they should have discussed the possibility of severe mental health side effects with you and let you make an informed choice. And if they didn't understand the science enough to see the looming risks of those side effects, then they shouldn't have a license to prescribe
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I was told nothing...ziltch, zero, nada....about almost every aspect of this disease. I was handed a few simplified booklets that more than not, gave almost glowing information that left a vague feeling it would be a walk in the park. Full of pictures of smiling bald women having their hands patted by doctors (which I never experienced). Just like many before me on this thread I found out from online research and BCO.....that I wasn’t imagining the craziness tamoxifen caused in the beginning. When I brought up the SEs with my first MO she just nodded in agreement leaving me scratching my head as to why I wasn’t warned in the first place. She followed this convo with “wait until you go onto an AI, it’s much worse”. Of course I asked just how bad and she replied “you don’t want to know” and ended the appointment with that little ditty. Really?!?
The only member of my team that fully discussed all aspects of my situation was my RO. Between him & the BCO sisters I was finally able to advocate/question in an at least a semi-intelligent manner. Before I was simply a lemming. Read, read, read and question just as much, don’t leave without answers.
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I took Tamoxifen for a week. It was after surgery, chemo and rads. Kid you not, I was in my closet staring at the belt thinking I'm done. I was so suicidal that I figured I had enough "treatment" and was done for what I thought was beginner cancer. I took myself off ASAP and life began to look up. It's 8 years and I'm still here. Nobody told me that was going to happen.
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Egads007, I think they count on most of us having unquestioning obedience. Like their training prepared them for the Leave It To Beaver simplicity of doctor /patient relationships in the 50's or earlier. The idea that we question their dictates, that we should question everything, is foreign to the thinking of most of them. I am always suprised how irritated most doctors get when I would question them or disagree.
Rockym, you are an inspiration to me and many others, for trusting your own perceptions that tamoxifen was making you suicidal. I became suicidal, was that way for months, felt like I couldn't do it because of my children, so lived in 9 months of absolute misery, taking that evil tamoxifen on a daily basis. I finally stopped when I frightened my then 7 year old daughter in a fit of lunatic rage, I finally realized the tamoxifen was making my life a living hell.
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I think our primary care doctors need to be more on the ball about interactions with other drugs and contraindications with other medical conditions. I've been lucky in that the specialists I've had to see are REALLY on the ball with that, but it should be the PC who is aware of ALL prescriptions and treatments.
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I think Primary Care should definitely be in the loop to help manage the various specialty care, although I think that each prescribing provider should be held accountable for their own actions.
I went with a friend to see her ARNP provider for bronchitis. The ARNP knew about my friend's history of panic attacks, discussed the use of steroids sometimes causing increased anxiety with her. They brainstormed together, decided she should skip the steroids. The ARNP said that she is responsible to know possible interactions/side effects of any medication she prescribes.
So don't let the oncology docs off the hook. If they don't pay attention, if they provide sloppy care, they should be held accountable for harm.
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I have been off aromatese inhibitors for a while and I stopped the paxil. I can't seem to stay asleep for more than 4 hrs at a time. I not sure what is waking me up aches and pains or maybe anxiety. I think I still have hormone imbalance my skin is dry on my face. That is unusual for me. I am getting better at taking krill oil vitamin d and e everyday it helps. I am noticing better skin on my face.
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That's good you are getting better, but sorry to hear you are still having poor sleep. I assume you are on Melatonin and also are taking Magnesium Malate or Mg Taurate or Mg Threonate, or a combination of these. Mg Threonate has specifically been studied for help with anxiety.
https://www.lifeextension.com/Magazine/2018/6/Reverse-Clinical-Measures-of-Brain-Aging/Page-01
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I had weird dryness on my skin while on the tamoxifen, and for a year after I stopped as well
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wow!! 50,000?
I want to take more D3 because I’m on the low side.
Do You remember what your D3 number was?? Mine is 45
D3 is so important
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Did you try something else instead?? I’m taking ground flaxseeds everyday. I’ve read that it’s just as good as Tamoxifen without the side effects ... fingers crossed:)
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I eat these really scrumptious chocolate, ground flax muffins daily. I have Vitanin D3 around 40. Can't exactly remember. Was on 5,000IU daily. Increases absorption to have with a high fat meal.
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Hi everyone...its really sad that the MOs prescribing these drugs know so little about female hormones. As Ive said many times before if the MOs are uneducated about our hormone levels we should have an endocrinologist or at least a gynecologist on our breast cancer team. These are life threatening side effects we are talking about. They are really doing us a disservice by not addressing it. Good luck to all navigating this complicated disease!
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dtad, you are right that the md's are rather clueless of how hormone levels change, and the effects this can have on our health and quality of life. Yo would think they would make this information a priority, especially for hormone driven illnesses like bc.
I don't ever feel like our health is part of the equation for them.
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I was recently explaining to someone why I stopped the tamoxifen.
I told her about the severe mood swings that left me contemplating suicide, frequently.
I started to have severe vaginal dryness which led to repeated episodes of UTI, and embarrassing incontinence at times.
I had painful ovarian cysts staring about 3 months after starting tamoxifen which kept freaking me out, and that I had gotten multiple ovarian ultrasounds.
But really the final straw was yelling at my younger daughter like a complete psycho lunatic. She was only 8 and I could tell I had really scared her, with my out of control tamoxifen fueled outburst.......That was it. I gave them up that day.
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hello all I was on Tamoxifen for 5yrs only side effect I developed was gain a little weight but that came of after finished. As moderator mentioned everyone not same as for insomnia I had that before I started tamoxifen cause of diagnosis developed anxiety given Ambien for that. It is good to stop some reocuurence I am now a 25yr Survivor this yr and all I went thru was worth it for me for No recurrence. Was diagnosed at 42 with no family history and while making wedding plans for our second marriages. msphil idc stage2 o/3 nodes 3mo chemo before and after surgery Lmast then got married then 7wks rads and 5yrs Tamoxifen. Praise God I made it thru.
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I was having terrible fatigue on tamoxifen and kept trying different brands. None of them caused me mood/depression issues until the third one. So it's worth trying to switch up brands if you're having mood side effects.
On the other hand, I haven't yet found one that doesn't leave me fatigued. Maybe 4th time will be the charm!
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I have been on Tamoxifen for almost 11 months now. Up until this last refill, I was on Watson/Actavis manufactured pill. My last refill is Teva. And while the fatigue is still there, I could swear the depressive effect has lifted somewhat. I am also sleeping better. Hot flashes are more frequent however. I don't know if it is a placebo effect or not but then again I guess I don't care as long as the depressive "fog" lifts some. Between that and the weight loss issues ( I can't keep my weight up on this medication) I was hopeful to perhaps be able to reduce my daily dose. Based on genetic testing I am an intermediate metabolizer so that is off the table for now.
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It's nice some of you had minimal side effects while taking tamoxifen, but does that help me or others who weren't so lucky?
So many women experience these negative side effects, like severe mood swings and depression. This thread is for those of us who feel alone with this suffering caused by tamoxifen.
Our situation deserves acknowledgement, not to be swept under the rug.
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Macb04, I apologize if in any way you felt I was not acknowledging how difficult this med can be. It wasn't my intention. I was only sharing that I thought that possibly a manufacturer change in the medicine changed my body's response to the drug in regards to depression.
My best to you.
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macb04...I'm so sorry you are suffering these serious side effects of Tamoxifen. As I said before MOs are really doing us a disservice by not discussing these potentially life threatening side effects. I agree with you that those who have minimal side effects don't really get it. IMO if docs would listen and work with us the compliance rate might be higher than 50 percent. Please let me know if there is anything I can do or you just want to talk. Best of luck to you. Be well.
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I’ve been really lucky in that the SEs have been hot flashes and insomnia. The hot flashes have decreased significantly (ive been on tamox for 3.5 months) but the insomnia is still there. I gave in and filled my script for sleeping pills. Everyone says the insomnia will subside but so far, no dice. I do find some depressive symptoms some days , but I honestly don’t know if it’s the meds or circumstantial reasons.
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It's okay Rah2464. I appreciate you saying that. Thanks dtad for speaking up about this as well.
I just get so frustrated by some people, both women using tamoxifen, and doctors, who act as if the severe side effects didn't happen , or weren't really that bad. I feel that this thread is not really about how changing brands will fix the side effects. That might be true for a certain percentage of women. It is by no means the solution for ALL women who experience awful side effects on tamoxifen.
For some of us NO change in brand of tamoxifen will work out..... This is reality.
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The only side effects my MO told me about were hot flashes, vaginal discharge, and, oh yeah, uterine cancer. I did my own research for days on this drug and realized this is not something I want to be putting in my body. I'm only taking 10mg for now until I figure out what I can do alternatively. When I go back to my MO in a couple of weeks I'm going to ask him to spell out my exact risk with and without the drug. Unfortunately, we cannot count on anyone, even our docs, to do the right thing. We must always, always research and advocate for ourselves.
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kec1972...I so agree! I'm not trying to influence you either way. We all have to make our own informed decisions. I refused anti hormone therapy from the start but I'm post menopausal. I'm not sure what my decision would have been if I was younger. I have elected to lower my estrogen levels naturally. So far so good. Ive been NED for over 4 years. We have to be comfortable with our choices no matter what the outcome. Good luck and keep us posted.
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You are right kec1972, we are always our own best advocate, and must always do our homework.
I just know that when I started tamoxifen, because I was pushed into it after chemo poison, I had a great deal of aphasia and trouble with even simple things like reading. I would read paragraphs over and over, because I would loose my place. I had to rely on the doctors to tell me what to expect with tamoxifen.
They chose to keep the worst side effects to themselves
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glad I found this thread. I refused tamoxifen. I also experienced the abusive unprofessional responses. I refused for the reasons discussed here, This is a dangerous drug with far too many serious side-effects and has a very small percentage potential success rate. I also found just like everyone else, that potential side-effects or the potential for me to develop serious health consequences from taking Tamoxifen were denied or glossed over. My latest encounter after having a recurrence was the same treatment as I had encountered initially, arrogance, rudeness and anger. When I expressed interest in potentially having ovarian suppression I was told I could not have ovarian suppression unless I took Tamoxifen with it. Not quite true I don’t think ...
In terms of what I have experienced with these doctors and also what I have witnessed my father go through, I believe most people who work in the cancer industry are corrupt and value money over people's lives.I'm going to ensure that my story is put out there for the world to hear. Anyone who'd like to contact me with their story please feel free. It's going to be an interesting book
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