Tamoxifen trouble.....
This is my first ever post on this site, though I have been reading here for months. I had my diagnosis in March, stage 1 grade 3 tumour,no lymph node involvement . Lumpectomy, radiotherapy and tamoxifen were the treatment plan. I have followed that plan until three weeks ago, when after 6 weeks on tamoxifen I could no longer cope with the side effects. I have never felt so ill, (I was pre-menopausal before at 47 years old) and had some side effects from tamoxifen not even listed on the drug information. The only thing I didn't have was hot flushes (Im on venlafaxine), but after 6 weeks I have extreme exhaustion, anxiety where I couldnt function with raised BP and heart rate constantly, mood swings became crying all day, then depression and suicidal thoughts were constant at the end of six weeks. I had muscles twitching all over my body, muscle spasms, vibrations of muscles and feeling phsyically fatigued,hair loss, urinary incontinence starting, debilitating IBS with terrible bloating, weight loss, not sleeping, a period that was flooding for days, no desire to see anyone or leave the house, and just feeling like I had lost my whole 'self'. It was a desperate situation and so, I stopped taking it. I could no longer live like that. I had a postnatal hormonal psychosis after giving birth 18 years ago, so probably not suprising this happened. I took it for as long as I could, but no longer felt 'safe' with myself. I am clearly not one of those lucky ones who have little or no side effects.
Anyway, that was three weeks ago. After 5 days of not taking it my mood lifted from the 'out of control' suicidal thoughts and I started to feel so much better although still having mood swings. However, after three weeks I thought that all the symptoms might have gone, many have but not all. I still have IBS and still have twitching muscles and vibrating muscles (that can be seen on the skin surface, but some are deeper and not seen and only felt). I am meant to be restarting the darned stuff on a 10 mg dose every other day for a while, and being monitored, to see if a slower 'lead in' works better. I just cant bring myself to take it until I am more stable and can be sure that the side effects will go. Is there anybody else out there who has had similar side effects to me? I am presuming I am now in a state of some sort of hormonal imbalance and it won't sort out that quickly, but I am really scared that the mental state could return to being bad and just generally terrified to be honest. I wasnt like this through the surgery and radiotherapy, I smiled my way through it...but this is/was hell on earth.
Is there anybody who can relate to me and offer their thoughts? how long should I expect for all side effects to resolve? Or has the shifting in hormones pushed me into menopause now? I would be really grateful for some input here as my onc. is less than sympathetic, but my GP certainly does understand the issues.
Charys
Comments
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Hi there. So sorry you are suffering. No you are not alone. The fact is that only 50 percent of women complete the 5 years on anti hormone therapy due to SE. The fact that your oncologist is not sympathetic is maddening. IMO you should find a new one who will work with you to find a solution. You should not have to live like that. Good luck and keep us posted....
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Thank you for your kind reply. I did let my onc. know that I was getting muscle twitching, spasms and vibrations that were all over my body and out of control....and her reply was 'she'd never heard of it and was sure it was nothing serious and I should carry on taking it'. That was in the first few weeks, by week 6 of feeling psychologically so bad, I didn't bother to go back to her and went to my GP instead as I just don't feel able to even bring things up now. I believe (I am in the UK) that shortly I will be transfered back to the care of my surgeon, rather than the oncologist, and I have a hugely better relationship with her.
) There is another departmental oncologist, but I am hoping if I end up back with after care with the surgeon then I might not need to see either ;o) -
Hang in there! Always trust yourself when it comes to knowing how you feel and don't let anyone tell you it's all in your head. If your oncologist never heard of your symptoms, well, she has now and should thank you for educating her. If she is just going to leave it at that without consulting another doc (or do an online search of the medical literature) you are right to get out of there. I love this site because I am always up on what others are experiencing. I am sometimes overwhelmed by the loving attitude and the willingness to share. Of course we should not be giving medical advice but we can become aware of things we might want bring up with our doctors. I just stopped taking Anastrozole because of the side effects. Right now I don't think I will be willing to try a different AI any more than I would be willing to swallow hemlock or shoot myself in the leg. I think I have chosen this doc well enough to expect we will have a polite andmeaningful discussion and I may even end up changing my mind, but just in case I have arranged for a second opinion. This may make me a "difficult" patient, but Hey! this is my body and my life.
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I’ve had those muscle twitches for years....now that I think of it, coinciding with mid-perimenopause. They are annoying, some in the foot & leg even painful, but not a symptom of anything harmful. If you suddenly lose the ability to use a limb, or complete loss of feeling (paresthesia), then ask for a neuro referral. But it’s not the tamoxifen, which has plenty of other SE’s--rather, it may be the alteration of how your body uses estrogen.
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Would't the twitching qualify as an SE because it would not be happening if you had not taken the Tamoxifen?
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Hi there,
Thanks Sara for your encouraging comments, you are really strong 'kick ass' ladies on here lol yes, it is most definitely a side effect of tamoxifen. ChiSandy, all tamoxifen side effects are also possible menopause/ peri menopause side effects, find a long list of menopausal problems on forums and they are the same as tamoxifen lists on forums. Maybe I made it just sound like a minor annoyance, it wasn't, it was all over my body all day and visible to other people. Full muscle groups were having spasms, my muscles were weak and fatigued and now and again a whole limb would make an involuntary jerk outwards. The point is about a natural menopause is that the side effects slowly come upon you and your body can adapt gradually, when you are pre menopausal, the sudden onset of the hormonal change with tamoxifen can be devastating for some people who are sensitive. I appreciate though that you were trying to reassure me Chisandy that it was nothing Sinister going on, so thank you for that and appreciate your reply. :0) Oestrogen is a neurotransmitting element for muscles, so it stands to reason that when it drops it will have this effect, but it is the dramatic effect I struggled with. I will come back later and address some of the other points on the posts, but morning here in the UK and domestic issue calls.
Thanks to all
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Hi Charys - Sorry you're having trouble with Tamoxifen. The first time I tried it I felt I had all sorts of side effects and I only lasted ten days. The panic attacks and the suicidal thoughts were terrible. I muddled through the next few months with help from my PCP and a counselor. Turns out there was much more going on emotionally than I realized. PTSD-like symptoms are very, very common for us BC folks. There in a whole section dedicated to it on the main pages of BCO.org. It took me many months to turn the corner emotionally and during that time not taking tamoxifen and not doing everything I could, weighed heavily on me. Eventually I decided to just try again, and that time I had the garden variety SE like hot flashes and such. My onc was fine with me starting again, even a year late.
I'm coming up on five years since my dx soon, I'll continue to take HT another year to make up for the time I lost. I did the best I could at the beginning. That is all you and anyone can do as well. It takes time to sort things out. You'll get there.
Gentle hug from across the sea!
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Hi Farmerlucy 😃
Just wanted to chime in and say I too struggled greatly with Tamoxifen and while taking it I felt severely depressed, crying and not wanting to leave the bed. It was terrible, I couldn't take it. I stopped taking it and then tried again, within 3 days I was back to the same place. At that point I decided to stop all together.
My MO at the time had no answers, so I switched to a new one. I ended up.having a hysterectomy and am now taking Femara. I have SE's on this one too, but not the horrible emotional stuff. I knew I couldn't live like that.
((Hugs))
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I also decided not to take it after only two weeks, couldn't imagine taking in for five years! I had two cites of IDC on left breast and had mastectomy .Dr. said I had a 90% chance of it not recurring and that the Tomixifen only raised that by a few percentage points.I'm a month out of surgery now and going back to work Friday. If and when it comes back I will deal with it then.
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I so can equate to what you've written here farmer Lucy.....it is the 'weighing heavily thing'. Knowing you arent taking it, wanting to take it, yet knowing how ill you were on it. Its like a terrible catch22 that you can't ignore. I will look up the page you mentioned, about trauma, I recently purchased a book about surviving and developing after the trauma of a cancer diagnosis.....but I've found it too traumatic to read LOL No, I havent got round to it actually, but must do!
Thanks for your reply, it is so good to hear from other women who have these struggles, I SO wanted to be somebody who could cope on it.....but I will try again and see if I fare better this time. I don't understand how there are so many oncologists who literally give you the script with no follow-up and no concern about how you get on. They knew I had had a hormonal psychosis, I had expressed my concern, yet I've had anyone call/check/follow up.
It doesn't help when people around you, who have no concept of how awful you felt, and mentally dangerously so, can keep telling you you are doing the wrong thing and are scared it will come back, and I must start again and I'm doing the wrong thing by not doing so. I've tried to explain, but unless you've felt it, it is impossible to understand (this is a man I am referring to) Are all of us/were we at the time premenopausal I wonder? The saying is that the side effects hit those women more severely.
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If only there was some more intensive follow up on these therapies. The medics know there is an issue with so few women managing long on these medications, and with so few completing the 5 years , let alone the new goal post of 10 years. It makes me sad, as many of them will be struggling with having to make a decision about life quality over cancer recurrence.
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I had similar SE I first started hormone therapy a few months ago. Anastrozole and venlafaxine were prescribed, but I complained of horrible hot flashes, inability to sleep, and panic attacks so I was switched to tamoxifen. It was supposed to be "gentler". Well, now add to those symptoms suicidal thoughts. I had been taking sertraline before all this happened, and for a reason, so when I was instructed to go off it and replace with venlafaxine, it didn't help with hot flashes like it was suppose to and it certainly did nothing for my depression. I'd begged my onc to help me out, but was told it was because I was given Lupron shots to put my ovaries in a coma during chemo, that it was the effects of Lupron causing my misery. The day I thought about eating my gun I stopped taking venlafaxine and went back on sertraline. Still taking tamoxifen BUT I no longer have the tense muscles, panic attacks, and I sleep oh so much better. Plus, I don't want to die as much. I think venlafaxine is the devil.
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Liloefer - Hugs.
I was 55 when I had an ooph and I was so surprised at the intense impact it had on me. I can only imagine dealing with it at a younger age. I'm sorry the Effexor didn't work out for you. I felt the same way about my trial with Celexa. I'm glad you have something that works. This BC stuff is so hard. So many people were "put" in my path that first difficult year. I'll spend a lifetime paying it forward. If you ever need a "listening" ear please private message me. My counselor was an amazing lady around 70. She set me straight about my suicidal thoughts!!! After that "talk" I just prayed every night that God would take me.
Hmmm. In retrospect I can see some humor in it, but back then I was so far in the dark well I could see no light at all.
Please - anyone reading this - you are not alone. We "not so newbies" hang out here to help. Again- anyone - please private message me if you need to "talk" to another soul.
Hugs all around my sisters!
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When I first started on Tamoxifen, I felt my MO was insensitive to what I was going through. He didn't dismiss my SEs but there just wasn't anything he could do about them. I truly believed that the only reason I had an MO was to write my Tamoxifen Rx.
Another month & I will complete 5years, not doing 10.
The muscle spasms, cramps, twitching have been problematic throughout the 5years. Initially leaping out of bed several times a night with leg or feet cramps. My hands would spasm & make typing or handling objects difficult. Abdominal muscle cramps happened also as well as jaw muscle cramps. I still get these cramps but at lesser frequency.
As for my mood, my patience isn't was it was previously. I cry more easily. Also. I feel "nervous" & on edge.
My eyes/vision took a hit & my uterus is another story.
Hoping to return to my old self soon but I know I'm 5years older & that might not be possible.* sigh*
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I find it interesting that you talk of the same muscle problems, on another site I am on, it seems that nobody has been experiencing it. I think you have done amazingly well to get to 5 years, quite an achievement considering how you've been feeling! (I have to say my eyes also felt dry and misty.) How did you come to an acceptance of such life changing side effects?
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Charys- I do think you have it worse than I did. One of the things I do is keep to myself. Usually walking, hiking or biking. I also workout just about everyday with earbuds in. I'm thankful my son was 13 when I was diagnosed. I wouldn't have had the patience for a toddler. Although my son became challenging in high school(MIP & weed).
As for the muscle cramps, they lessened after 6months or so. There was a thread here at BCO about them with some suggestions, none of which worked for me. One was to put a bar a soap under your sheets at the foot of your bed. Some swore by this. There once was a drug, Quinine, that some doctors prescribed for leg cramps. It is intended for treatment/prevention of malaria. My friend took it for leg cramps & found it helped then her doctor wouldn't prescibe it anymore. The FDA forbids it's use for leg cramps. Tonic water has quinine in it. But you have to drink a 2liter bottle to get the same amount as in 1 pill. I couldn't drink that much of the stuff.
I've let a lot of stuff slide in the way of housework. Hope no one comes to visit. One of our bathrooms is out of commission. I just don't want to deal with contractors.
I also use to calculate how many days or weeks or what percentage I completed or had left to do.
There are women who truly can't tolerate the Tamoxifen. My mood worried me. I was ready to stop if it got any worse.
Hoping things get better for you, on or off the drug.
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Hello Charys
I am now 55 years old and have just started my fourth (and last) year of Tamoxifen. I tried Femara for one year, but could not continue due to SEs. I do know the feelings you are experiencing. I felt like life was being sucked out of me and replaced with depression, sadness, emptiness etc.
The first 7 months on Tamoxifen were the worst for me. I took 0.25mg Xanax morning and night to counteract that horrible feeling of life force leaving my body. The xanax helped, and I also took Ibuprofen as needed for my headaches and foggy head feeling. Now, after 4 years, I am doing okay. Hot flashes are much better, foggy head is somewhat better, still get very achy but things are much better than those first few months . If you can get medication to help with the side effects, it makes the time to get used to the Tamoxifen easier to handle. I still struggle, but it is doable for me.
All the best to you and keep us posted, we are all here to help!!
Hugs,
Iniah
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Thank you Iniah and Coraleliz,
It always helps to hear the stories of others, it helps that lonely feeling, where you are struggling and nobody else around you can understand due to lack of experience. It must have been a horrendous struggle pre-Internet days for women. Yes, Coraleliz, it's the mood that s the real problem, physical symptoms are one thing but suicidal thoughts ar quite another......am now on Venlafaxine.....maybe that might help when I restart. That's not quite accurate, I've been on an extraordinarily low dose of Venlafaxine for years, but ai have increased it substantially in the hope it will help during reintroduction. After reading all your posts, which I have done with interest, I no longer feel guilt at taking this 4 week break. I can only do the best I can, and it struck a chord with me that I shouldn't feel pressured and rushed but try and get myself back to a good place again before restarting at a reduced tamoxifen dose, otherwise it will fail again I'm sure. I have taken on boa all the has been said, and I thank you all again for your replies.
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I think tapering on to tamoxifen is a great idea which I did as well. It helps your body get used to the medication. I started on 5 mg and slowly went up to 20 mg over a months time. I did it at my own pace as we are the only reference to what works for us. Give yourself all the time you need. I was so scared to take tamoxifen I almost went crazy . Nobody understood why. It was tough but I tried to take it one day at a time.
Hugs!!
Iniah
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Sara...yes!!
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I started Tamoxifen 3 days ago and today have very bad shooting headache ...Is it Tamoxifen? Anyone else?Also do all gain weight on it. I am so terrified..........
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Hi, Charys. I just wanted to suggest that you and your onc might get some input from a psychiatrist, as that is the expert in depression etc. and drugs for it. Someone needs to see the big picture here and think about your own particular history and how the drugs interact. Maybe your GP could help you do that. Yes, breast cancer is dangerous, but so is severe depression.
Victoryak, many of us do fine on tamoxifen; try not to expect the worst. Personally, I got a spare tire, but did not gain weight.
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Hi All, just updating this post as it's been ages since I stopped tamoxifen (maybe about 12 weeks). I saw my oncologist this week and (after she had a conversation with the head oncologist, based on the list of physical and psychological symptoms I took along) it was firmly decided that my side effects were rare and severe. Based on this it has been advised strongly that I don't take it again. It has taken most of these weeks to get back to 'mostly normal' and it is believed that the same thing would happen again if I was to retry taking it. 'Quality of life' was discussed, and the fact that the risk of taking tamoxifen for me was much higher than the risk of recurrence. I am both pleased, and sad, a really difficult position. Alhough the oncologist certainly saw the 'bigger picture', there are no alternatives as the zoladex injections would do the same but possibly give me worse (and non reversable in a 6 week period) problems. There has been no support from a psychiatrist (I dont have one, or certainly havent in 18 years) but the oncologist I saw this time seemed astute with psychiatric links to sudden hormonal changes. I am not prepared and neither are they to start on the road to a severe mental health problem, with the need for monitoring and medical interventions. If I wish to restart, I need to ring my BC nurse, and she will be alerting GP and local mental health services....sounds like a military plan lol I wanted to say that for many people, as has been said before, there are no issues....but a few of us, and often those who gather on these forums....have a severe response. So, dont be scared of trying it, if I would take it I certainly would be x
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hi Charys, good to know you've reached a decision. The uncertainty is also very hard on you emotionally. I think you are not alone in having severe mood problems with Tamoxifen. It is such a difficult issue when you fear recurrence but the side effects of the treatment to prevent it are so severe. So I hope you've found peace with this.
I have a similar problem in a way, the multi disciplinary team decided on balance I should stop Tamoxifen but my own oncologist wants me to carry on. He wasn't the oncologist at the MDT when the decision was made. So whatever I do, I'm not following someone's advice.
Clearly there are times when it is hard even for the specialists to weigh up the risk of recurrence against the risk of side effects. I just wish there were better options out there.
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