TAMOXIFEN - NEUROLOGICAL SIDE EFFECTS?

BlueCowgirl

This is my 5th day on Tamoxifen. Beginning last night, I got a buzzing sensation in my head, beginning in the front behind my forehead, then all over. Intermittent.

Today I happened to have an appointment with my MO and mentioned this. He did a battery of neuro tests, of which I miserably failed the balance related ones. He ordered emergency CAT scan to rule out brain mets...Thank god it was normal.

Anyone else experienced anything like this from Tamox? There are SO MANY other things that could be causing it, including recent bad reaction to effexor that landed me in the hospital, but I am no longer taking effexor and hoping to continue the Tamox...

FWIW, MO's advice is to call him immediately if neuro effects worsen, or to follow up in a week with a neurologist if they have not resolved completely. 

Moderators

Edited

BlueCowgirl

Thank you!

BlueCowgirl

Bumping...

Bren-2007

Cowgirl .. I had the same problems on Tamoxifen and Arimidex.  I had extreme vertigo, dizziness and nausea.  It was so bad that I couldn't drive.

I tried the Tamoxifen for 6 weeks and the Arimidex for one week ... I quit both drugs four years ago.

I was taking Celexa while taking those medications.  I had read that Celexa didn't interfere with the metabolism of them.

I had to make a decision to either try to stay on the meds or quit taking them.  Because I was Stage I with no positive nodes, and I had a prior total hysterectomy, I decided against taking them. 

I'm glad your scan came back normal.  Hope all is well with you.

Bren

BlueCowgirl

Thanks for the info and well-wishes, Bren. I am struggling with balancing meds too...I think I may just go back on Celexa anyhow because I have been a total mess without it...But then again it hasn't exactly been an easy week, so I should probably give it some more time.

I know how much my MO wants me on Tamox, and he said no way it is causing this. I am wondering how many others have had the same SEs and I know I will get some answers here. I am really hoping it is not the Tamox, but will have to wait and see...It's amazing how much more reliable the info here is on SE than it is at the doctor's office. FWIW, Dana-Farber, supposedly one of the best...  

Oh yeah, and I have no reflexes from the knee down, also discovered at yesterday's exam. Doctor says this is from Taxol, but why would it just be showing up now, 6 months after last Taxol? He called it "Taxol Neuropathy" but maybe it is "Tamoxifen Neuropathy"?

eulabt

I have had major neur issues from the taxoifen. I was on it for 7 months. I have been off of it for 1 month and I still am getting back to normal. Good luck.

chabba

I have balance issues but they didn't show up until about six or seven months of tamoxifen.  My PCO diagnosed it as periffial neuropathy probable due to tamoxifen.  I too have no reflexes from the knees down.  The Dr said no cure but showed me how to minimise the balance problems by trying to keep a third reference point since the feet are a bit numb, by running a hand along the wall, chair backs etc.  He also suggested a cane for those times I know I'll be out in the open, like crossing a parking lot.  It keeps me from losing my balance and it has been four months since I saw him.

BlueCowgirl

Damn it. F*cking cancer, f*cking drugs, f*cking SEs. Goodbye athletic career, obvs., if this continues or worse yet progresses. I did not think I would have to make these quality of life vs quantity decisions at Stage III. I am trying to be positive and think maybe there is some other explaination, but it's not working. Did anyone else start feeling like this within a few days? Did it will get worse?

I do appreciate your posts, please keep them coming. Knowing the truth is more important to me than false hope. I am so sorry other women are dealing with this too.

Merilee

I was on tamoxifen for a very short time. I was dizzy and eventually lost the hearing in my left ear.

I have talked with others who experienced the same thing. Proceed with caution! The FDA is currently gathering info on this as well. Not to scare you, but at the same time, I hope the same does not happen to you. If you google tamoxifen and hearing loss you will find some things.

Best wishes, sincerely.

BlueCowgirl

Thank you for the info Merilee, and so sorry you had to go through this. Has your hearing returned?

The doctors make it seem so benign. Not to offend anyone because I know it is a major topic of discussion, but I can handle vaginal dryness, the "big" side effect my doctor warned me about. I cannot deal with deafness, blindness, permanent loss of coordination, or any of the other neuro effects I am finding as I google. My doctor says stop looking at the internet. I say start telling us the truth!

coraleliz

Since I didn't have chemo, it has to be the Tamox with me. Dizziness-when i lay on my back my head spins but I found turning on my side alleviates it some. Definitely clumsy/balance stuff going on. I went hiking about a week ago & my legs were so wobbly. At one point I did fall, got quite a few bruises. Sometimes I have trouble with balance on the eliptical trainer at the gym. I keep seeing a "breaking news" link show up here at BC.org about women being treated for BC breaking bones. I keep telling myself "duh" but I haven't read it. I've been on Tamox for just over 2 months. I'm still hopeful these & other SEs will subside.

BlueCowgirl

Oh Coraleliz, I am so sorry. I hope it gets better for you too.

Chabba - I cried when I read your reply. I don't want to walk with a cane. I am not even 40 yet. Not so long ago I was a professional athlete. I am not ready for this.

So Chabba, and any others who have no reflexes knees and below, did you have Taxol?

Eulabt - Sorry you went thriugh what you did but so glad to hear you are improving. Are you taking a different hormonal drug, or have any other options been presented to you?

And who wants to discuss any or all of these issues they've had that have resolved or at least improved? While taking Tamox? After quitting Tamox? Let's do our own informal non-scientifically significant study here. Who's up for it?

cycle-path

Bluecowgirl, how long have you been off Effexor? I experienced buzzing when I stopped taking Effexor. It didn't particularly bother me, but it went on for several weeks.

chabba

I've been on Tamox just over 13 months.  Lumpectomy, radiation and Tamoxifen.  For the last 40 years (I'm 69) I've rarely had any trouble sleeping.  Shortly after starting Tamox I started having sleep issues but I've been fortunate that melatonin is enough to help with that.  I really haven't had any significant SEs other than balance, sleep and neuropathy in the hands, legs and feet.  I don't know if the increased pain in my neck and shoulders is related since I've had arthritis for years. 

BlueCowgirl

Cycle-path, you have made my day. I was only on effexor for about a week, last dose was taken Friday am, hospitalized Friday pm with irregular atrial rhythms and buzzing started after I was released from hospital...lemme think...Sunday night. So 2.5 days after my last effexor. The buzzing isn't painful at all and only so disconcerting because of all the other stuff going on neurologically. As I described to my doc it feels kind of like the strange nerve sensations I get when touched around my mastectomy area. Not pleasant or unpleasant, just new and strange.

Chabba - Any idea if your loss of reflexes started before or after starting Tamoxifen? No Taxol?Thanks for all the info. I have severe arthritis from C3-T1 too, which has caused neuropathy even before BC, perhaps some of these drugs make that flare up?

Thanks EVERYONE. I feel like the more stories I hear, the more sense I can make of my own, and the better educated decisions I can make about my treatment plan, and the I really hope this thread may help others in the same way. Your sharing means more than I can express, blessings and best wishes to you all.

chabba

BlueCowgirl - The loss of reflexes and numbness definately started after Tamox, a couple of months I think.

BlueCowgirl

Bumping...And adding that although the buzzing in my head has decreased, my balance has not improved. 

judyfams

Have any of you had the test to see if you have the gene  CYP 2D6 that does not allow you to properly metabolize Tamoxifen? 

Could that be the cause of your problems?  One of you had the same problem with Arimidex, but the rest of you only mentioned having these neurological problems when taking the Tamoxifen.

Maybe you can question your MO about being tested to see if you have that gene.  If that might be the problem, then Fareston (another SERM) was developed to help those women who cannot metabolize Tamoxifen.

Judy

BlueCowgirl

Judyfams, thank you, I will ask my doctor about that! Curious of course too to know the answer to your first question...

cycle-path

Buzzing about 2.5 days after stopping Effexor sounds right to me. I didn't get it right away either. 

I actually thought the buzzing was extremely interesting and sort of funny. I'd be minding my own business and all of a sudden "BZZZTTT!" For some reason it reminded me of those gag handshake buzzers that you can supposedly use to give someone a surprise when they shake your hand.

I also had visual disturbances with the buzzing. I MIGHT describe it as balance issues, though I'm not sure. It was strange. It was sort of like being in a movie in which the action stopped for a moment, or slowed down a lot for a moment. Not exactly vertigo, but pretty similar. As I recall, these little episodes were always preceeded by the loud buzz, but I may be misremembering. 

Former Effexor users refer to this stuff as "brain shivers," and I just checked a web site that definitely says that vertigo is part of Effexor withdrawal. You should check it out.

Were you on XR or regular Effexor? Apparently the withdrawal from XR is considerably more intense.

Brain Shivers -- read this. Very interesting.

Augustmoon

Hello to all.
I am currently on my Rads -- # 5 of 25 to date. As early as now..i am NOT inclined to take any more Hormone therapy -- My Onco said i should be on Tamoxifen because of my condition and that I am genetically predisposed. Frankly, I am scared of the SE's and if it will only give me 5% better chances of NOT recurring, i would rather use the 5 years exploring other treatments that can also give me the numbers.
Please help me by suggesting an alternative mode -- to replace Tamoxifen I can consider. I want to take back the control of my body.
Thanks.

Heathersmom

I'd like to add;

I had been on tamoxifen for 11 months then switched to femara for 15 months, back to tamoxifen for 5 months . I am currently on a vacation from it due to painful tendons, muscles; dizziness, stuffed head, ringing in my ears, pressure in ears, face,sinuses and feelings of depression. At one ONC appt I complained of the dizziness and a brief moment of disorientation (I didn't recognize where I was for a few seconds) he did a few neurological tests, said I passed those but told me to let him know if similar symptoms continue or get worse. All has been well since then.

 I have been on the vacation for 4 weeks now and the dizziness is not as severe, I think much clearer, the painful tendons are persisting and the depression has lifted most days. I feel like somedays are better than others but overall I see a definite improvement. Most of the side effects began about 4 months into femara. When I switched to tamoxifen the severity of all effects lessened but were still enough for me to cry "uncle" and ask for a vacation. BTW, I was tested for how well I metabolize tamox and found that I am an extensive metabolizer.

I am currently deciding whether or not I want to take the tamoxifen back into my life. I have seen 3 co-workers in the last 5 years go through a recurrence of breast cancer and all of them had taken the tamoxifen for the 5 years then femara for 2 years, after their initial diagnosis.

 If a recurrenence is in the cards and it is just a matter of time before it happens, I am trying to decide if I want that time to be SE free or not.

To sum it up, I have had similar SE, am an extensive metabolizers and am also wondering if the SE (which can last a loooong time) out weigh the benefits.

Chevyboy

Morning cow-girl....I have also talked to Merilee....  I have Deafness from Tamoxifen, after taking it for 14 months....  It isn't listed as one of the side effects, and I probably would have just brushed that thought aside, if I had read it....because I thought keeping cancer away is MOST important....

But I quit taking it in February.... Got hearing aids, because of 100% loss of "word recognition" in my left ear, and only 50% loss in my right.  "Permanent nerve damage'...... I've reported this to all that I can, sent letters, even some of the pills to the drug manufacturer.  Just be aware that "things happen" and no-one can explain it!

Tamoxifen is like a chemo drug...and VERY hard on any hair follicles, which is what your nerves are in your inner ear....

sbaaronson

I just restarted Tamoxifen after a brutal headache and vertigo induced vacation. Frankly, I don't know if I will make it to the 5 year mark, though I did see an Integrated Oncologist at UCLA and she gave me many herbs and supplements to deal with some of the SE's. ANd, to her credit, the herbs and supplements have diminished many of the SE's but left me with others. With my diagnosis, I know the right thing to do is take the Tamoxifen but it is absolutely a decision to risk A to diminish to the risk of B. I hate it but feel if I don't take it and I have a recurrence, it will be a tough conversation with my family and friends.

calamtykel

I'm so sorry you are dealing with.  I totally understand the agony of balancing life quality with survival stats.  I would suggest you look at LifeMath and plug in all your info and see what it is with and without tamoxifen (I think you want the "treatment calculator" section of the website.)  For me it was a 3-5% overall survival over 15 years.  However, when I developed severe dizziness and one sided numbness out of the blue one morning, I ran to the emergency room - I had been on it for three weeks.  Like you they did an emergency CT scan to look for a stroke/brain mets.  It came up clean but I was told I still may have had a small stroke since a teeny clot can't be seen. 

 I continued to have bad effects on the tamoxifen- I had severe vision changes and this feeling in my head like there were "bubbles" - I don't know how else to explain it - it was like a bubbly, fuzzy and very scary feeling.  

I reported all this to my oncologist who PUSHED for me to continue the tamox.     My neuro symptoms became so bad I developed severe anxiety.  Like all day panic attacks from nowhere - my heart racing - it was like someone had shot a Red Bull directly into my blood stream - all day long!  I was on three different meds for it and nothing helped.  When I went off the tamox, my symptoms gradually went away and within three weeks of being off it, I had gotten rid of all the anti-depressents and anti-anxiety medication.

Yet still too, I too, was told "it's not the tamoxifen".   My doctor had a fit about my decision to stop it.

My oncologlist did some hem bloodwork and I came up with a genetic clotting disorder.  Had I stayed on the tamoxifen, I may have been dead of a stroke. Nice that they thought to test this AFTER my stroke scare!  

 I will say that I am very angered and frustrated with the way the push this drug full steam ahead and absolutely DENY these symtoms.  How can they deny them when a quick Google search will show that we are NOT alone?  Nobody told me about deafness - I didn't know about that, but I had such severe visual disturbances that I was unable to even sit in front of a monitor or book,  so it absolutely doesn't surprise me.  I was also too dizzy to exercise and that scared me - because exercise is a major risk reducer!

This is not an innocent, benign drug.  I thought it was - I didn't bother looking at the SE's  - I was just told "Hot flashes, vaginal dryness, blah blah".  I figured yeah, whatever - I'm tough and I can handle stuff like that.  It is frightening how they acknowlege chemo side effects but they plow the side effects of tamoxifen under the rug.  

I understand how scary the decision is to take it or not to take it.  It was NOT easy - it took a lot of soul searching.  Having been through BC, it is not something you wish to revisit - especially with mets and that is why I guess they push the drug regardless.    I  wish you the very best, whatever you decide!

Chevyboy

Morning gals... Kel,  you really DID have a life threatening reaction to the Tamoxifen it sounds like!  These Docs we trust just don't realize what is going on when we try & explain what is happening to us!  They only believe the books, and their drug reps about what the SE's are.

They can't understand that something like what you experienced, nor my deafness could have ANYthing to do with Tamoxifen!   And my Onco ALSO wanted me to stay on the drug, even after I showed her everything about Deafness from Tamoxifen I had printed off the Internet.... So that's when we take charge of our own life.

I also had those SE's like "warm waves," leg cramps, but I thought it was a small price to pay, for believing Tamoxifen would stop any more cancer.   I've TRIED to get my hearing back, by using those candles to remove wax.... and by holding my nose & blowing hard...and just waiting.... thinking that it CAN'T be permanent... But I've been deaf since January, and it hasn't gotten worse, but no better.  I believe "permanent" means just that...

Calamity, I know Tamoxifen also causes cataracts in some women...so make sure you do get your eyes checked. 

I believe ANYthing can happen with any drug... For that to happen in your head, and with your vision?  They were all nuts for not thinking it was the drug.... That  LifeMath says a lot!  At my age, there wasn't that much difference in my survival rate either with or without Tamoxifen! 

So we have to be our own advocate...and not take a drug, just because it "might" help us.... We can't believe everything we hear.... or in my case....not so much...

Take good care

eulabt

BlueCowGirl- I have been off the tamoxifen for 6 weeks and for the first time, the dizziness went away at the beginning of the 7th week. It has only been 4 days. I don't feel totally normal, but much better. I go back to my Onco on Jan. 16th and will decide where to go from here. How are you feeling?

BlueCowgirl

Freaking out!!! I am waiting on results of brain MRI and really hoping I don't have to wait all weekend. I know report is already at Onc's office, but *he* is the only one allowed to read it to me...UGH!

In a nutshell: Neuro symptoms (balance) is worse. I cut myself back to 1/2 tamoxifen, and when I saw MO last week he said to keep that 1/2 dose until we figure out what is going on. I have an appointment w a neurologist on Weds next week.  

I have read everything on this thread multiple times and so appreciate everyone's input. When I can focus better, I have lots of questions and thank-you's etc but at this moment I just can't concentrate - hope you all understand and thank you again!

eulabt

BlueCowGirl- I totally understand. I ahd an MRI as well and had my results with-in 24 hours. My Dr. made sure I had them first thing in the morning. I can't believe that your Dr still has you on the Tamoxifen. Good luck.

Chevyboy

I know!  When we are almost begging them to help us, to just beLIEVE us, they just take their time getting back to us!   I just stopped the Tamoxifen, without my Doc's approval... I didn't get my hearing back, but "other SE's" might be helped by going off of the pill.

I honestly wish I could still take it....Or any of the other ALS...but I'm just too afraid...