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Tamoxifen often causes insomnia/depression. Did they warn you?

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I just was talking recently with someone I know on Tamoxifen. She was having worsening trouble falling asleep as the months went by on Tamoxifen. She also noticed increased mood swings, and her usually optimistic disposition just disappeared the longer she was on tamoxifen. I asked her if her doctor had warned her about how very common those symptoms are. She said they never told her a thing. I have read about the fact that Tamoxifen causes rapid depletion of the neurotransmitter Tryptophan. I also read that Tamoxifen has been used to treat Bipolar Mania in Psychiatric Drug Trials. That was never told to me or my friend. I had many of those bad side effects, also got painful ovarian cysts (another side effect the doctors never mentioned) so after 9 really bad months I gave up on the tamoxifen. My friend is seriously thinking of giving up tamoxifen too.

Did your doctors tell you the truth about all the likely side effects, let you make an informed choice? Isn't that our rights, as patients?

Here is the research I found about the psych testing of tamoxifen for Mania.

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Comments

  • meow13
    meow13 Member Posts: 1,363
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    I was never told there were any permanent side effects with tamoxifen or AI drugs. You may not have any side effects on anastrozole my mo told me. I tried to ignore the pain until it hurt so bad I couldn't get out of bed to go to work.


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    The article that you cited was from 2007, and it was a "Pilot Study." What became of it? I am on Tamoxifen and feel amazing. I have so much energy and take 50,000 units of Vitamin D weekly through a prescription and work hard to stay fit. I eat a very healthy diet, mostly raw fruits and veggies, nut milk and nut cheese. I knew the side effects before I starting taking the medication. I plan to stay on it indefinitely. As an educated pharmacy major, I am compelled to do everything I can to stay well. If you do feel pain, exercise is a great combatant.

  • dtad
    dtad Member Posts: 771
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    Hi all. Wether or not the study is valid or not we should all be aware of the potential SE of any powerful drug. The fact that most MOs do not discuss this is not acceptable. Even worse is when they do not validate SEs that are actually experienced! I'm happy for the who tolerate well but that is just not the case for all. Good luck to everyone navigating this complicated disease.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    dtad, I would not generalize that MOST MOs do not discuss side effects. I would say the opposite. However, the patient can consult with multiple pharmacists, both hospital and in store, to garner information. Of course, there is plenty of information online. Not sure what type of MO you had, but mine is amazing, supportive and highly knowledgeable. In the end, it is really up to the patient to do their "due diligence" and make an informed decision. I would also state that many women experience very insignificant side effects from Tamoxifen. You never know, until you try, right?

  • dtad
    dtad Member Posts: 771
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    Hi Michelle...my MO is from a major NYC university based teaching hospital. There are countless women on this forum who have said their MO did not make them aware of SEs and/or validate them. IMO most MOs really know very little about female hormones. It's just not part of their oncology training. I would love to see an endocrinologist on the BC team. I agree that ultimately we have to be our own advocates but our docs also have a responsibility to us. Happy you are doing well on Tamoxifen. Good luck to all.

  • pupmom
    pupmom Member Posts: 1,032
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    The only SE I've had on tamoxifen is hot flashes. Those were pretty bad the first six months, and now close to 2 years later have pretty much gone. On Als I did have joint pain. The reduced risk of recurrence is well worth some annoying SEs. I feel for those who suffer more.

  • Bosombuddy101
    Bosombuddy101 Member Posts: 54
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    Thank-you for bringing this to our attention. How would one get an endocrinologist on the team? Is it as simple as getting a referral from a G.P. and then monitoring one's levels of estrogen and progesterone and how often should we be monitored?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Endocrine specialists generally do not weigh in on anti-cancer drugs, even if they are hormonal. Tamoxifen has been around, since the 1970s, discovered in the 1960's. It is one of the drugs that doctors study in medical oncology school, residency, fellowship and practice. Because of the prevalence of breast cancer, MOs can even be more highly specialized. I am very fortunate in my area, to have top doctors from major medical universities, such as USC, Wash U, Vanderbilt, Harvard, etc. We have a major medical school in my locale as well. I stand by earlier statement, that women have to do their own due diligence. It is not up to the MO to hold our hand, we must hold our own hands.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I found my gynecologist could offer a helpful perspective on the side effects hormonal therapies.

  • macb04
    macb04 Member Posts: 756
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    I do disagree, michelle in cornland, those who prescribe the medications are responsible for explaining the most likely, and most dangerous side effects. If a provider/doctor were to be sued, it would not look well at all if they did not follow standard of care and explain about possible negative side effects. Most people have to depend on their provider to explain, they do not have your medical background. When you are faced with a number of complicated choices, yet are feeling sick, recovering from chemo or rads, you are not at your best self for medical detective work. It's nice your doctors were helpful, mine were part of seattle cancer care alliance, had an excellent reputation, yet didn't talk with me or my friend about the horrible mood swings, insomnia, body aches and ovarian cysts. The same hospital put my 76 year old neighbor on tamoxifen, and completely downplayed the risks of blood clots. She has been hospitalized three times for blood clots to her lungs, and this last time she was off the tamoxifen for several months. Now she is burdened with almost $400 per month out of pocket for an anticlotting medication that she now needs to take for life. She can go on a cheaper version, but then needs blood tests to monitor her levels every month or two FOR LIFE. She is pissed! And who can blame her,!

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Mac, the doctors and their staff do a very good job of explaining side effects, losses and issues with medications. But for those suffering, it is never enough information. We, bc survivors, are ultimately responsible for ourselves and need to compare notes, go sleuthing, dig deep for information. Additionally, with all medications, patients are given pamphlets to read from the pharmacy filling the prescription. Someone, either patient or caretaker, has to read the information and actively participate in the decision to take the medication. As a patient, I expect the best of care, not just standard of care, from my doctors. I am careful to choose whom I work with and who sees me as a patient. I have been a patient advocate, speaker, and community organizer for a hospital. Demand the best of care, and have the knowledge to back up your decisions.

  • macb04
    macb04 Member Posts: 756
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    With all respect, HA! If all doctors did things thst way, there wouldn't be scores of women here saying exactly whst I am saying. You may not mean to be disrespectful, but saying the "doctors and their staff do a very good job of explaining side effects, losses and issues with medications. " discounts my experience and the experience of my friends and all the other women on these boards who were not informed, as they should have been.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Mac, I am sorry that you had a bad experience with whatever drug you were given, not seeing your stats or meds, it is hard to deduce what you went through. If you have a grievance, take it up with your MO. There are many, many, millions of women that have taken Tamoxifen over the years. And, many, many, of those women are on these boards as well. I am here to support those that want to try to take Tamoxifen, that are taking Tamoxifen, or are considering taking Tamoxifen. I am here to share my personal experience taking Tamoxifen and remedies to any small complaint that Tamoxifen might cause. Some people just cannot take Tamoxifen, period. But, do not try to influence innocent persons trying to prevent recurrence. That is why, at the top of every page on the Hormonal Forum, this statement is presented:

    Forum: Hormonal Therapy - Before, During and After —Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

  • jackster51
    jackster51 Member Posts: 139
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    macb04, i'm with you 100%!

  • gardengypsy
    gardengypsy Member Posts: 499
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    As my side effects intensified, I finally asked my MO, "Why don't oncologists warn us about side effects?"

    Her answer: "There are too many side effects to review, and you might not have them."

    The doctor who said this is at one of the top (four) cancer hospitals in the US!

    "TOO MANY TO REVIEW."

    I think that an oncology team should have a pharmacist who specializes in cancer drugs on board. Mine did a "medicine reconciliation" to be sure that I wasn't taking drugs and supplements (for Tamoxifen's side effects) that would interfere with T's effectiveness. Because of this, I stopped taking several herbs, including Tumeric, Ginseng,Elderberry and Echinacea. It was very recently that the AMA medical profession acknowledged the power of herbs and supplements.

    This professional review of our medicines should occur regularly and be standard of care.






  • macb04
    macb04 Member Posts: 756
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    Thank you Jackster51 and GardenGypsy for being willing to admit that what should be done, and what is actually done by the medical profession are quite often far, far apart from the reality that we women live.

  • marijen
    marijen Member Posts: 2,181
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    My MO writes that I am in agreement yet I don't see the notes until they're filed as digital data forever. When I bring in studies she refers to them as pieces of papers from the Internet. She gaveme no information, not even brochures. I wasn't aware that I would have to dig deep for information because RO won't offer anything except a crummy piece of paper to sign with all risks jumbled together in tiny print on one line in a rush and tell me I don't need to take notes on her answers to my questions. When I ask questions I'm told oh this only happens in less than1% of the time. When I had reactions to treatments they acted like they never had a patient with nausea, or swelling. My BS makes jokes of my concerns and says I don't need to know.. Cornland must be in a parallel universe where patients are required to have medical degrees. Michelle with all respect, I find your comments condescending and cold hearted.


  • meow13
    meow13 Member Posts: 1,363
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    My mo never mentioned any side effects, I tried to work through the pain. Well it didn't work out finally mo said let's try no more drugs. So far ok with pain and tumor markers.

    I am afriad of tamoxifen because of my SIL second primary cancer. My mo said you know she was one of the unfortunate few, it is very rare but he understood my fear and didn't press it.

  • traveltext
    traveltext Member Posts: 1,053
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    Before going on tamoxifen I read all about the side effects on the Internet. When I talked this through with my MO, she said: "it's best not to have preconceived notions about this drug, just try it." Well, that was three years ago and I've had none of those listed side effects. I count myself lucky that this is the case with me, since I have a serious version of this disease and I need the drug as an important part of my treatment. I do, however, feel sorry for those who can't tolerate it.


  • chef127
    chef127 Member Posts: 226
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    I don't think a dr ever explained a medications se's with me. ever. I have several conditions that require strong meds to treat and the se's are endless and potentially hazardous and cause other conditions that call for more meds. My neuro is always trying to get me on something, anything in his arsenal to treat me and the last thing he suggested listed BREAST CANCER as a se. He has no clue WHO I am. Read the f'ing chart. I did my due diligence and went home and researched the med. Maybe the drs need to do the same. "Hold my hand" through this mind consuming illness.

    My MO never mentioned any se's when she rx'ed an AI but she did say "It's the most important tx." I never admitted to her that I would not take it and when my endo sent me for a dexa scan it revealed my osteoperosis and she quickly decided to change the rx to tamox. Now I could have treated myself without a degree in oncology. This tells me we are not treated as individuals and the bottom line is take the meds, bear w/the se's, and felling like shit is just something you have to deal with. NAH.

    I just want one of my 4 drs to treat ME, but they all say that's not what they do, so I really have to keep searching for a dr who can understand my whole body, hold my hand, and curb the pharma market I'm expected to keep in the medicine cabinet.

  • nancyhb
    nancyhb Member Posts: 235
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    I tried Tamoxifen - twice - and finally quit because of the SEs. My MO explained there could be some SEs but said straight-up "everyone's different and you won't know how it works for YOU unless and until you try it." He told me about those SEs he hears about the most - joint pain and fatigue and weight gain- but also explained the power of Tamoxifen in reducing recurrence and left the choice to take the meds up to me. My experience was rough and when I recounted it in detail to my MO and NP they were both surprised but said it helped them better understand why some of their patients choose to forgo Tamoxifen. They tell me very few of their patients experience SEs like mine and I have no reason to doubt them.

    Some of the SEs we experience are not from the drug itself but rather the loss of estrogen in our bodies. The worst for me were the mood swings and anger/depression - which dissipated when I quit the meds, but returned in full force when I hit menopause for real earlier this year. And this time I couldn't stop popping a pill.

    We do have a responsibility to understand the meds we're taking, and make the choice to take them or not. I can't rely solely on my MO to know what a medication is going to do to ME personally; he tells me what's likely and most possible, but doesn't run through the miles' long list of potentiality. Some of us have had really bad experiences on these meds, and it sucks that we don't have SE-free options to battle this disease. We won't know, though, until we at least try. I can't blame my doctor for my experience - he couldn't have known how it was going to be for me.
  • dtad
    dtad Member Posts: 771
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    Michelle....endocrinologists know much more about female hormones than most MOs. The reason this is important is because the SEs of these drugs are from hormonal changes. Most MOs do not do any hormone testing which IMO is a huge gap in our care. I do agree that most pharmacists know more about these drugs than MOs. No matter how much research we do, I still feel that the prescribing doc also has a responsibility to us. I also think its insulting to tell us we are better off not knowing about SEs as if its mind over matter! I'm also in the medical field and I agree with KB878 that some of us just rely and trust our docs. Good luck to all navigating this complicated disease.

  • pupmom
    pupmom Member Posts: 1,032
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    Do any of you take baby aspirin under doctor's orders? (I do.) The list of serious, life threatening, SEs is much longer than those for Tamoxifen. How many of you have had your doctors sit down with you and read each and every one? If we demand this for our bc meds, we need to demand it for every single medicine we take. I'm not saying it's a bad idea, but would certainly change the amount of time we spend with our doctors. One thing I am sure about is that all we have to do is ASK our doctors to explain every SE for every medicine they prescribe or recommend. They would definitely go through the entire list. And if not, switch doctors.

  • ksusan
    ksusan Member Posts: 461
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    My MO (and SO and RO), at 3 different institutions, reviewed the major side effects of every medication and procedure, answered my questions, gave me stats, and provided handouts on minor side effects. None ever disparaged or dismissed any concern I raised. I'm aware that others don't have such a professional team, and if possible, I encourage people to find better docs if they're not getting what they need. My first MO said that he didn't have time to answer my questions, but that I should trust him. I had an appointment with a new MO by later that day.

  • dtad
    dtad Member Posts: 771
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    ksusan...good for you! We should all have docs like that!

  • pupmom
    pupmom Member Posts: 1,032
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    dtad, many of us have doctors like that. I did have to change my entire team to find them, though. I encourage any who have doubts/concerns about their current docs to at least seek a second opinion. My second opinion lead to my switch of teams.

  • Herculesmulligan
    Herculesmulligan Member Posts: 61
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    Nancy HB....what you said was very well stated. I also believe we can expect our doctors to list the most common side effects of new drugs but that it's not realistic to expect a run down of every possible side effect. Some people are on 15 or 20 meds; the sheer volume of information would make it useless. The printout from the pharmacy is a good resource for more in depth info.


  • macb04
    macb04 Member Posts: 756
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    I think that the sloppy, doctors, of which there are a number, (as evidenced by these boards), should not be let off so easily. They can do a fair bit of damage before it is realized they are subpar. I had incompetence from an onco at scca. I made an offical complaint about her and they sent me a form letter saying " they were sorry that I didn't like her care" They didn't care, AT All. They made it enormously difficult to switch doctors. Those of you who had such an easy time switching, good for you. The rest of us can be trapped with an inferior provider for a variety of reasons outside of our control, like insurance plan, small town, ect. I still think the prescriber is responsible for listing, oh say the top 5 to 10 really harmful side effects, and then making sure patients know there are more side effects they might encounter that they can find in the literature from the pharmacy/the internet. For me insomnia was huge, and they never mentioned it, not the doctors, or the nurses, none of them. One study said 17% of women on tamoxifen have insomnia. I bet it is higher than that. Sleep deprivation has a HUGE impact on quality of life, they should at least have given me a heads up. It's isn't even listed as a side effect on Novalodex's website. I was entitled to have this explained to me from the start. And no I don't want a sleeping pill. I sleep just fine again now that I am off that awful tamoxifen.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I would like to point out that some of the "effects" of Tamoxifen, or what we perceive the "effects" to be, can be due to other factors such as radiation, chemo, etc. I started writing about insomnia during radiation. I did not take Tamoxifen for several months after radiation, due to another surgery. I started complaining about insomnia on lumpectomy lounge during my radiation treatment. Most women get tired for up to a year after radiation, not me. I was wired and felt like I was charging my batteries during radiation treatment. The insomnia drove me absolutely bonkers. One good side effect of Tamoxifen, at least for me, was that it made me a bit tired after taking it in the evening. But, I am wired all day long.

    A recommendation that I make to others going through chemo and radiation is to not start the anti hormonal during that time, unless the doctor says you absolutely have to do two treatments at the same time. You will not really know what causes the side effect and may give up on something prematurely.

    I don't know about the rest of you, but I was soliciting opinions months before I even started taking Tamoxifen. I would ask other women in the women's lounge during radiation treatments, and called friends and relatives who had taken an anti hormonal. I have had alot of support from my MO's office, Chi-Sandy, Claire_from_Seattle, Logang and a friend on here from Israel. We are not afraid to ask about other things in our lives, why can we not ask about something so pertinent to our well-being? My father always taught me to be brave, ask the hard questions and be ready for the answers. At least with answers you can make an educated decision. I stand by my statement that most doctors do a very good job of informing their patients about the risks and benefits of anti hormonals. Why do you think they do so much blood work, and a dexa scan before prescribing?

    Doctors are not GOD as someone pointed out earlier and they are not mind readers, either. They cannot entirely shoulder the responsibility for their patient's decisions. We, breast cancer patients, must do our job to inform ourselves of whatever treatment - chemo, radiation, anti hormonals, additional surgeries, etc., holds for us, and arm ourselves with information. If we don't understand the information, ask the doctor to explain it.

  • macb04
    macb04 Member Posts: 756
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    So you ladies, did your doctors tell you the truth about possible side effects of tamoxifen , or any of the other treatments as well, or were you blindsided? Do you feel that full disclosure should be made to each patient, to allow them to make an informed choice?