Onc didn't mention brain mets but she still worried me

Anonymous

After a full year on tamoxifen (20 mg EVERY day), most of that time also taking effexor/venlafaxine, my oncologist has me off the tamoxifen, and tapering off the effexor, and seeing her again in a few weeks. She wants me off because of some symptoms I've had recently, to see if they go away after being off these meds for a month. (I am on no other medication.)

I will list them below and want to know if I should be worried about them.

Before seeing her this week I felt pretty sure these were SE's from the meds, and I *thought* from the effexor, as the dizziness/nausea reminded me a bit of how I felt when I first went on it or upped the dosage (I ended up with a dos of 150mg, which have been on for about six months). And all of these have started over the past year, and seem gradually to be getting worse.

But my onc says no, that these are not likely from either of the meds. So she wants me off the meds ASAP and see how I am doing in few weeks and if they haven't gone away, to look for something neurological or "with the brain" I did not want to ask her more detail about that (and she seemed in a hurry and irked -- she said something about "women don't like being on tamoxifen" -- but I have worked hard to stay on this and I WANT the er+ protection!) Anyway I didn't want to seem like a hypochondriac or make her more upset with me, so I didn't ask more in the moment.

Of course after leaving the office I started to feel worried and am kicking myself for not asking more quesitons.

How concerned should I be that this is brain mets? My cancer was only stage 1, low oncotype score, no signs of spread, wide surgical margins? AND if it DOES turn out to be SE's from the meds, what then?:

*Dizziness and mild nausea, especially overnight (if I wake up in the night to pee for example) and when I wake up in the morning. It usually gets better in middle of the day. I am prone to motion sickness and this feels a little like that, and a little like how I felt when first going on or upping the effexor dosages.

* Balance issues, mostly at evening/night, and more likely if I am tired. My husband says when I "stumble around" that I look drunk, even though I have not had anything to drink. (This is how it feels to me also, like my body is drunk" while my mind is sharp) Other times I am perfectly OK! I have not fallen, but I feel like I need to be a little more careful in how I walk/move.

* I have noticed (though others have not noticed this) that I have a much harder time remembering simple words. I need to stop and think for the word, or can't remember it at all. Simple nouns mostly. It stops me in my speech for a few seconds. I also just feel "slower" to react and I need to have a moment to take in and think about what someone else is saying. Others don't notice this but I know myself and this is not like me at all and has come on only over the past year, since being on these meds.

vlnrph

As a retired pharmacist, I can tell you to be very careful in coming off the Effexor/venlaxafine. It is possible to open the capsules and shake out some of the contents instead of dropping down a full increment. My gut feeling is that the side effects you describe are from this medication, not brain mets...

It’s probably safer to stop the tamoxifen. How would you be able to tell which agent might be responsible for your symptoms when changing both at the same time? There is a phenomenon of rebound tissue density increase which can occur upon discontinuation of estrogen receptor blockade. Something of which to be aware should a mammogram be scheduled.

You are probably premenopausal - perhaps there is a cyclic nature to the lightheadedness. Many of us experience the word finding issues as we age: my attitude is that the memory bank is so full of information that it just takes longer to sort things out. Sort of like an old computer trying to run complex new software!

ksusan

I've experience these side effects since surgery. My impression from listening to others is that Tamoxifen seems to be a source of vertigo/balance problems for some.

Cpeachymom

EpicSquirrel- memory issues definitely come up a lot with regards to hormone therapy, even for those of us who never had chemo.

And I also find myself stumbling sideways when I get up at night. I never thought too much about it until your post. I assumed it was the meds, especially because when I first started taking it it made me feel like I had a little too much to drink. No dizziness or balance problems during the day. I take my Tamoxifen after dinner, so that could help I suppose.

Hopefully that’s all it is is SE and there are other options if that’s the case. Also, some people have seen huge improvements just switching which brand of Tamoxifen they take. Or if your pharmacy recently switched brands on you, that could be it too.

Good luck!

Anonymous

Thank you all @vinrph @ksusan and @Cpeachymom This has made me feel a LOT better! Love to you all, I am thankful for you sharing your experiences and this good information with me. Whew!

I will go forward with doc instructions and see how I do off the medications for a few weeks (though I will taper carefully off the effexor)

wallan

Hi Epicsquirrel:

I am on 150 mg Effexor SR and anastrozole (arimidex) and have been for a little over a year now.

I had stage 1 BC, no nodes. No rads. No chemo.

I too have had your symptoms. Dizziness, vertigo (especially after waking up), and a very foggy brain where I can't think or focus. And headaches.

I was told to stop Arimidex for two weeks and I had a head CT. The symptoms did not all go away when I stopped the Arimidex. My head CT came back normal. So I started the Arimidex again at the end of the two weeks. The symptoms came back full force.

When I first started taking Arimidex and Effexor SR I took them at night but within a few weeks I could not sleep. So I started taking the Arimidex and Effexor SR in the morning. It helped, the insomnia went away. But the headaches, vertigo and dizziness started after a few months and really did get bad. I couldn't function some mornings. And, my thinking was slipping. It really scared me.

After my Arimidex break and the normal head CT, I decided to start taking the Arimidex after supper around 6 pm. I kept taking the Effexor SR in the morning. Within two days, I felt way way better. I do not get vertigo anymore and only occasionally do I get a headache like if the weather changes (it starts to thunderstorm alot, or after a hot spell, it gets cold and rainy). But the headache lasts a day and can be controlled by Tylenol or Advil. Quite tolerable. And my thinking is back to normal sort of... LOL (if you can call me normal. LOL)

So I think my dizziness/vertigo and bad headaches were from an interaction between Effexor SR and Arimidex when I took them in the morning together.

If you take both meds at the same time, try taking one at night and one in the morning and see what happens.

wallan

Racy

How long have you had these symptoms? The cause could be an ear infection or a virus. I think brain mets is unlikely with your cancer pathology.

It is good that you are getting this checked, however.

Wishing you well and keep us posted :-).

wallycat

Some have already posted what I was going to say....

Menopause/perimenopause (heck, before my periods, I would ALWAYS get dizzy--my gyn said water retention affected the ear canal, not just bloated belly!) can easily explain the dizziness. There's also a ton of viruses going around where people are posting dizziness and nausea as side effects that last and last.

The finding words thing is as close to hot flashes for symptoms as many, many women say happens as they get towards menopause and through it.

Add the stress of being told you have cancer?!!! memory is affected by stress.

And just because symptoms are not listed as expected, it doesn't mean someone won't experience them. We are all different.

Best to you. My vote would be that odds are against brain mets. You're lucky to have an onco that takes your concerns seriously and is working with you, but that doesn't mean she thinks you have brain mets...she's trying to resolve your symptoms, what ever is causing them.

Anonymous

Thank you all for these reassuring words. It also makes me appreciative of my oncologist for taking this seriously and getting me off all the meds to get to the bottom of what's happening.

My experience trying to go off the venlafaxine makes me even more sure that these symptoms are related to the venlafaxine/Effexor. Here is an update in case it helps others who search this topic in the future:

I went off the tamoxifen right away per my oncologist's advice. She suggested I taper the vanalfaxine over a two week period from the 150mg I was on. So a week of 75mg, followed by a week of 37.5 mg. Neither of those weeks was very bad at all, though I felt a slight increase in the dizziness/lightheadedness for a few days after each drop of, the same way I felt when I first started the med about a year ago, and each time I went up a dose. But then, when I stopped taking the 37.5 mg, 24 to 48 hours after my last dosage of venlafaxine, I stopped being able to function.

I planned on my last 37.5 mg capsule for Thursday evening. Saturday morning I woke up dizzy and nauseous more than usual, but still felt up to going out to the store that sort of thing. By the end of the day I was more dizzy, tired, and felt I had "overdone it" But Sunday came. I thought I was going end up at the ER or, as the day went on, wish I was dead. I have never felt that dizzy in my life, and it was getting worse by the hour rather than better. I thought I was going to pass out/go unconscious. I couldn't move my head sometimes even my eyes without getting really lightheaded. I had to hold on to things to walk around the house. I eventually gave in and called the weekend hotline/on call doc from the onc office and from my symptoms he said I may need a longer tapering of the effextor, and that I should take another pill that day, and take one every other day for a week or so and see how that goes.

A couple of hours after taking that pill I felt better. By the end of the day I felt myself again.

So I'm pretty sure this is all the venlafaxine. Also I wish I knew what a bear it would be to get off of. There isn't a smaller dosage than 37.5 mg so I'm not sure how to do this. But I'm glad to not be worried about brain mets at the moment

__

By way of background I had never been on any antidepressent or psychiatric drugs in my life. I have always had a pretty stable and happy mood/disposition, handle stress well, that sort of thing. I am also someone who is "sensitive" to many medicines (always able to take the lowest dose and get the benefit, but unfortunately sometimes I have been the one who gets the more rare side effects. I am allergic to penicillin and a couple other things) Anyway ghe tamoxifen made me feel angry, extremely irritable/lashing out, and also sad and hopeless. I did NOT feel like myself and it was intolerable for me. The venlafaxine made that go away, so that's why I was staying on it, to help me stay on the tamoxifen. (It also made the hot flashes a little more tolerable, and as an odd but positive side benefit, it got rid of a strange chronic nerve pain in my shoulder/neck that no other doctor had been able to help me with) This is why I was putting up with the little dizziness and nasea (a sort of motion sickness feeling) when I first went on it and when I upped the dosages. If it helped me stay on the Tamoxifen, given the profile of my cancer, I was OK with it. Unfortunately, as you can see in my original post, after being on the 150mg for a few months I started having dizzy/naseua again and other cognitive/neurological symptoms. That's why the onc told me to stop both meds for a while and come back to her and see where we are.