Tamoxifen often causes insomnia/depression. Did they warn you?
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Pupmom, you are correct. There is alot of anger surrounding a breast cancer diagnosis. As we know, it is one of the stages of grief and helps us to live with what we have lost. There are so many emotions that surface, and sometimes a counselor or psychiatrist can help direct those affected. I am grateful for every day that I can live my life, enjoy my family, and give back to my community. Everyone deals with their emotions differently, I tend to channel mine into physical activity and creative projects.
Side note: I do think that having a dog is great therapy and comfort. My dog is a schnauzer, 13 years old and fabulous. He loves carrots, sugar snap peas, and apples as treats. His usual hangout space is where I am at.
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Michelle, that's where my doggie hangs too! She is 3 years old. The pic is from her puppy stage. We lost our beloved yorkie about 2 years before we were able to adopt another. She will be our last. If she lives a normal life span I will be about 80 when she passes, my DH 87. I won't take on another dog, not knowing if it will be left alone after we pass. But I will continue to support animal rescue and causes as long as I can.
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KB870, doing a happy dance for you!
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bump
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Combination Treatment of Tamoxifen with Risperidone in Breast Cancer
- Wei-Lan Yeh , * E-mail: darren_chen@cch.org.tw (DRC); blue_lan0816@yahoo.com.tw (WLY)Affiliation Department of Cell and Tissue Engineering, Changhua Christian Hospital, Changhua, Taiwan ⨯
- Hui-Yi Lin, Affiliation School of Pharmacy, China Medical University, Taichung, Taiwan ⨯
- Hung-Ming Wu, Affiliation Department of Neurology, Changhua Christian Hospital, Changhua, Taiwan ⨯
- Dar-Ren Chen * E-mail: darren_chen@cch.org.tw (DRC); blue_lan0816@yahoo.com.tw (WLY)Affiliation Comprehensive Breast Cancer Center, Changhua Christian Hospital, Changhua, Taiwan ⨯
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- Published: June 2, 2014
- https://doi.org/10.1371/journal.pone.0098805
- Abstract
- Introduction
- Materials and Methods
- Results
- Discussion
- Acknowledgments
- Author Contributions
- References
Abstract
Tamoxifen has long been used and still is the most commonly used endocrine therapy for treatment of both early and advanced estrogen receptor-positive breast cancer in pre- and post-menopause women. Tamoxifen exerts its cytotoxic effect primarily through cytostasis which is associated with the accumulation of cells in the G0/G1 phase of the cell cycle. Apoptotic activity can also be exerted by tamoxifen which involves cleavage of caspase 9, caspase 7, caspase 3, and poly-ADP-ribose polymerase (PARP). Down-regulation of anti-apoptotic proteins Bcl-2 and Bcl-xL and up-regulation of pro-apoptotic proteins Bax and Bak have also been observed. In addition, stress response protein of GRP 94 and GRP 78 have also been induced by tamoxifen in our study. However, side effects occur during tamoxifen treatment in breast cancer patients. Researching into combination regimen of tamoxifen and drug(s) that relieves tamoxifen-induced hot flushes is important, because drug interactions may decrease tamoxifen efficacy. Risperidone has been shown to be effective in reducing or eliminating hot flushes on women with hormonal variations. In this present study, we demonstrated that combination of tamoxifen with risperidone did not interfered tamoxifen-induced cytotoxic effects in both in vitro and in vivo models, while fluoxetine abrogated the effects of tamoxifen. This is the first paper suggesting the possibility of combination treatment of tamoxifen with risperidone in breast cancer patients, providing a conceivable resolution of tamoxifen-induced side effects without interfering the efficacy of tamoxifen against breast cancer.
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To this day I still suffer insomnia even though I quit the AI and tamoxifen that had caused it. The last straw was the horrible GERD I had from tamoxifen. I took Prilosec two times per day and it barely helped. When I told my oncologist that I thought the tamoxifen was causing reflux, she said no way, it didn't cause reflux. I told her I was stopping tamoxifen. After about one week the reflux disappeared. I will not go back to the hormonals due to the SEs.
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I find oncologist don't care or know what side effects the drugs have. They are soley focused on the cancer not on QOL. My SIL developed a deadly GYN cancer from the tamoxifen. The oncologist was not on top of it by the time they discovered the new cancer it was too late. She lasted a little over a year aftering taking chemo drugs that had no effect on her aggressive tumors.
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I agree with Meow. They don’t care about the side effects and if you complain about them they look at you like you are crazy, whiny or even ungrateful because they have prescribed a drug that will keep BC recurrences at bay. Right not always
QOL is important. Good grief you are supposed to suck it up and deal with depression, insomnia, joint pain, inability to concentrate and even worse life threatening conditions all for the sake of the miracle drug? Seriously?
To add insult to injury they even have the gall to refute you even having such side effects. That’s really outrageous.
Be your own advocate. It’s your life not theirs.
Diane
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Corky, GERD makes sense when you realize that estrogen and progesterone have effects on gastric smooth muscle, and tamoxifen interferes with that normal response. I also had long term insomnia start when I was on tamoxifen that lingered for several months after I stopped taking it.
Meow13, that is such a terrible story about your SIL being killed off by a tamoxifen caused gyn cancer. The bc industry docs should not dismiss women's complaints, nor should they belittle how important a decent quality of life is. Your SIL's story is especially sad because they probably wrecked her life with miserable side effects, and then she died prematurely anyway.
Diane, I couldn't agree more, they pay so little attention to how miserable side effects can ruin any decent quality of life. I just couldn't take the insomnia, the extreme mood swings, the vaginal dryness and frequent UTI's. I stopped the damn tamoxifen after 9 awful months a few years ago, and I still get UTI's all the time. Ruined my sex life too, always dry and irritated even with lube, and has never gone back to normal. They don't tell you that their drug side effects can be permanent. I would never have taken it, if I new then what I know now.
In vitro studies have shown that estrogen and progesterone can affect the contractile response and myoelectric activity of the gastrointestinal smooth muscle. ... Estradiol inhibited gastric emptying but did not affect gastrointestinal transit. Progesterone increased gastric emptying.
Effects of sex steroid hormones on gastric emptying and ...
https://www.ncbi.nlm.nih.gov › pubmed
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Hi everyone...this seems like a common problem. Many MOs just won't discuss side effects from these powerful drugs. When I was first diagnosed I asked my MO about the side effects of aromatase inhibitors. She actually told me that there are none. She said I would feel exactly the same while on them. This completely shut down the conversation and I ultimately decided not to take them. IMO if we could have an honest discussion with our docs maybe we could work together and more of us would be compliant. Good luck to all.
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OMG, literally every time I complained about an SE, my doctors went out of their way to try to help. I have a real problem with our cancer doctors being painted with this negative broad brush. Of course some, not the majority by a long shot imho, are jerks, but why focus on the minority and denigrate all those who are working diligently for our health, and, yes, QOL.
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Bosombuddy101 -- There is that same risk with excisional biopsy. Mine left some of my fragile tumor behind, where it could (presumably) be eroded by blood sloshing against it in that blood-filled cavity for the next two weeks. And then, excisional biopsy also comes with the risk that the suspect tissue could turn out to be a particularly aggressive cancer for which Neoadjuvant Chemo would have been advisable.
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"The frequency of positive margins after lumpectomy for breast cancer ranges from 18 to 50 %."
Source: https://link.springer.com/chapter/10.1007/978-1-62703-634-4_6
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My MO went over the most common SE's and the most serious ones. He had a chart that compared the risk for each of the serious ones (with and without Tamoxifen) and acted as though the ones that weren't serious were possible minor inconveniences.
I seem to have a history of having problems with many drugs - often unusual SE's. I feel like many times the MO says he's never heard of it when I relate a problem. I had intended to try Tamoxifen after the Herceptin was done, but he pushed to start after I was healed from surgery.
I took 20 mg daily for 3 months. I actually never had bad hot flashes (must have used them up when plunged into chemopause). I immediately started having horrible muscle spasms in my legs at night. No help with supplements like Calcium, Magnesium, Potassium. No help with level of hydration, exercise, stretches. No help with Tonic water or the "soap under the sheet" trick. Up multiple times a night and sore muscles all day.
Then it was progressively increasing vaginal discharge - initially great after the extreme dryness I'd had. But wet, watery, uncomfortable in new ways.
But worst of all was my mood. I thought it was lack of good sleep or stress. Maybe the weather or family relational problems. Maybe it was the one year mark. And then my concentration started to really slip. I couldn't hold a thought! It's scary.
I quit Tamoxifen a few days ago. I need to see how I feel without any drugs. I understand that it can take up to 6 weeks to fully leave your body. The muscle cramps are WAY better, mostly gone already. No change noticed in the other areas yet. I'm going to see a counselor next week.
I think the biggest problem with everything BC is that we are all so different. It's impossible to know how any of us might react to any of these treatments. In general - these endocrine treatments reduce one's residual risk by about half. Depending on what that risk is - is it worth it? I think it's worth at least a try.
If and when I recover from this latest insult, I'll probably try Tamoxifen again at a lower dose. I've read some research that looks like there's comparable benefits with lower dosages. I really don't want to ever have a recurrence.
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Here's an interesting article today about a doctor's misdiagnosis and patient negligence lawsuit. Read it to find out who won.
http://www.empr.com/features/misdiagnosis-death-su...
I especially like this paragraph on page 3:
Protecting Yourself
Patients do have a responsibility when it comes to their own healthcare, but their responsibilities are broad and based on common sense: report symptoms accurately, ask questions, understand the doctors' instructions, follow those instructions. Patients are not responsible for second-guessing their healthcare providers, or detecting inaccurate diagnoses or poor medical advice.
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Thanks Marijen for this article. I agree it is up to patients to speak up about what is happening. But what happens when their symptoms are dismissed, or as frequently occurs, the doctors said there are no side effects, like dtad's doctor. I try to advocate for myself, but I think providers should have an honest dialog with patients. As I have seen from my own experiences and those of others here, that clear and openminded discussion doesn't happen as often as it should. I wish it did.
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I can only think of two reasons they won’t discuss with us, they either aren’t informed or they are scared of lawsuits. MyMO always puts in the notes “arrived alone” ie, no witnesses. Or does it mean I’m capable of getting myself to my appointment?
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Marijen, you can look at his notes?
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Yes Pupmom, I get a detailed summary online after every appt in which she always notes at the bottom that I am in agreement with everything she has written even though I haven’t agreed! But I try not to split hairs..
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Marijen, that's really cool! I can look at the results of tests and appts online, but don't have access to notes, unless I'm missing something, which is totally possible.
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The notes that are released to me are in reference to what was discussed during my appointment. There may be hidden notes she made that I don’t see.... but I think if you request all records from the Medical Records department it would include everything. You can also get CDS of your imaging I think. You have to indicate which doctor and time frame etc. There is a form you fill out. It is your right to see your records, you paid for them one way or another. Recently I asked the bone density department for my scan results, I had no idea how detailed they were.
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pupmom...I think it's great that you have docs that are open to discussing side effects of these drugs. We all deserve that. Unfortunately it seems to be a common theme on this forum that many do not! As I said above I think it contributes to the too high non compliance rate. My MO was from a major NYC university hospital. The problem was not that she was misinformed. The title of the thread deals with whether or not we were informed of side effects. I just wish more of us were. Good luck to all.0
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No they didn't tell me. Learned the hard way. I also got severe leg cramps from the tamoxifen. That was 8 years ago. So I switched to letrozole and other assorted things because the cancer came back. I have had lifelong problems with insomnia. And I am no longer taking tamoxifen. But I am here to just tell you what I have done after having insomnia for 50 years. Yes 50 years. I was getting quite desperate as you can imagine because with treatment I'm taking now the insomnia has gotten worse. So I tried everything. I had 6 sessions of acupuncture. I increased melatonin to 10 mg at night. And I've taken up meditation. I absolutely love the free app at calm.com. it's for meditation and sleep and stress. It even lowered my blood pressure.
One other thing I did that I think really made a difference was that I added magnesium supplements. I am now thrilled to report that I am sleeping through the night. Yes I have the bathroom breaks and yes I can go right back to sleep. Now I have your normal amount of insomnia, the occasional once every couple weeks. I hope this helps, good luck.
Oh and the Magnesium helps with leg cramps too! Big time!
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All I got was a nurse handing me a single sheet of paper with a list of possible side effects and saying "you need to sign this" which I did because I couldn't get treated otherwise. I didn't know what to ask and they didn't volunteer anything.
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Hi dtad, you are right that there is rarely the full disclosure. It doesn't foster a culture of trust in our providers. Initially I started off with good expectations of the docs. Sadly they were not honest, or just merely evasive when I asked questions, although a couple were actually refreshingly honest. They were the exception, but not the rule, unfortunately. All the docs had good reputations that they did not deserve.
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Yes I found oncologist and breast surgeon to be surprisingly quiet on side effects. Also I feel that they being unfamiliar with me and my health would quote standard of care and seem a bit suprised to my AI drug effects. I know my body much more than they did and really had to take control of my treatment.
I know their focus is to prevent recurrence but they seem to put far too much of the statistical studies. I am very dissatisfied with treatment options and feel we know so little about cancer. Literally grasping at straws.
Too much money is being spent on studies, such as alcohol use, exercise ..etc and not enough on real science behind finding a cure.
If you ask your oncologist why did I get these cancer tumors the answer is they don't know. Until they know they won't have a cure. Risk factors are really meaningless to me. I didn't have any they could point to.
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bump
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No. Totally blindsided; after reporting the symptoms they first tried to gaslight me and say it must be the chemo. It destroyed my career
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Requested one prior to treatment and told it was unnecessary. Demanded one after
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Agreed
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Someone pointed me to the Mayo Clinic list ofTamoxifen side effects and it was a huge eye opener. It is extensive and made me see I'm not crazy
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