loss of balance

[Her2nSue]

Hi All,

Has anyone out there been experiencing the loss of their balance, feeling like you can't walk without falling over? This is the third time it has happened to me. Usually in the middle of the night when I need to use the bathroom. I don't rush out of bed (after the first time of falling toward the left side into a dresser :( I now sit upright for a bit before getting out of bed) Today I did the same thing, but the sensation of falling to the left everytime I tried to get upright was pretty strong. But I don't have the sensation like the room is spinning or anything like that, I just try to be up right and end up falling to the left side.

I've been up and around today since my ragdoll episode of earlier, but my sense of balance still feels like it wants to lean toward the left. Weird. So, I thought I'd throw this question out there to see what you guys think. I'm currently on my 9th cycle of taxol and herceptin, once a week. Before that was on 4 cycles of A/C. Finish with herceptin and taxol at the end of the month and then do herceptin alone once every 3 weeks for a year.
Onc has been telling me my numbers look good, they're keeping my anemia up every other week with red cell booster. IDC, estrogen+, prog-, 1 cnt tumor, stage 1, grade 2 and her2neu 3+. No node infiltration.

Thanks for any in put. Wishing everyone well out there in Her2 land.

Sue

[juanita]

I can remember doing that when I was on chemo. My teenage son liked to kinda make fun of me, joked he wanted some of whatever I was having. It took awhile after I was done with the final treatment to finally stop. Hang in there!

[AlaskaAngel]

Hi Sue. Your description fits me to a T. If I get up at night I have to aim to the right of where I really want to go or I end up hitting things to the left and missing where I am trying to be. I've had this for 1 1/2 months, along with simple occipital neuralgia -- which feels like someone is smashing a board up against the back of my head most of the time. The occipital neuralgia I have is not related to the cancer or the disequilibrium.

I had much worse loss of balance with the spinning feeling about a year after diagnosis, and saw my internist, who did all the standard office tests and then together we decided it was probably typical vertigo. It went away eventually.

I am stage 1, grade 3, and 4 years out. This time, because the disequilibrium has lasted so long I just had an MRI with and without contrast, which was completely clear other than a small spot or two typical for age. I don't know how long you have had the problem, or what stage you are.

With the clear MRI I have scheduled an exam with the ophthalmologist to see if maybe the disequilibrium is really eyestrain of some sort and a need to wear glasses on a steady basis. If there isn't anything to that idea I will try to check things out with an ENT. If I were you (and if you were diagnosed as early stage like me) I'd suggest you do those 2 things before going for the MRI.

Let us know how it goes,

AlaskaAngel

P.S. For anyone with occipital neuralgia, the only thing that seems to help with that is using a low dose of a muscle relaxant like Flexeril.

[Chelee]

Hi Sue, What you describe sounds pretty much like me. On my first chemo I had Herceptin, Taxotere, & Carbpotin. Was fine all day after infusion other then the normal stuff...taste, being tired, etc.
But that night after my first infusion I woke up to potty and got out of bed and fell to my left. Scared me to death. Thank goodness my waterbed has high sides so I could catch myself. I slowly worked my way to the bathroom & continued to be off balance as you said...not a true dizzy...but some where in between. Hard to explain...not vertigo ether. But I kept having problems with falling towards my left each time. I asked my infusion nurse about this...and my oncologist and they both said they had not heard of this?

I just had my second infusion and this time I was dizzy/off balance the minute I stood up from my infusion...which did not happen the first time following infusion.

But my first infusion was the herceptin, taxotere, & carbpotin...followed by weekly herceptin alone. This second time around they changed me to every three weeks with a concentrated dose of all three drugs. So the first time when I did the weekly herceptin following the one week of all three meds....I didn't get off balance till I got out of bed that night.

The second time when I was only having a three week does of all three it was imediately following infusion from the minute I stood up. I told my infusion nurse am I suppose to feel kind of dizzy/off balance? I told her its not a true dizzy...but I felt very unsteady and I always wanted to fall towards my left as you mentioned.

My last chemo was three weeks ago. I had that off balance feeling for several days after my last infusion. I hated it...it had me worried something else was wrong? Then it went away. But its been about three weeks since my last chemo and I started getting that off balance feeling again for about the last week out of the blue. Really bad when I wake up at night to use the bathroom! But it was happening in the day this last week too. I called my oncologist and infusion nurse and they said my red blood count was down a bit so come in for some Procrit and it would make me feel better. So I did that yesterday and and my LATE last night that I was NOT falling towards my left anymore. But I don't really know if it was the Procrit that helped....or it just went away? But the information sheet that comes with Procrit says you can get dizzy. Although like you said...and I did too...its not a true dizzy...its falling to the left.
I don't know if any of this helps you...but your post helps me because I hate it when they always tell me some side affect I mention that they never heard of it. Then I will read it here. You explained it really well Sue...because I was just like you...it was really hard to walk without falling over! In fact I would be careful but still fall back into my bedroom walls, bed...or when I was in the kitchen...I would grab the counter to catch my fall. My husband had to help me get into the oncologist yesterday due to this problem. I am just lost as to WHY it happened the first time at NIGHT AFTER I had been in bed sleeping...and only then. But this second time it happened imediately following chemo?

[Her2nSue]

Hi Guys,

Thanks for responding to my questions on balance. I was starting to worry that it might be something worse going on. Juanita, I can empathize with you about your teenage son and his jokes about your balance. You should hear some of the comedians I have to live with! :-)

I would say that the balance thing started along with herceptin and taxol, after several infusions. I had mentioned the first episode to the onc. who just said keep an eye on it. Well, now that I see that I'm not the only one listing to the left, it has given me some security in realizing it's one of the many side affects of the fun we are all going through. Yesterday's was the worst because even when I was walking or sitting I'd have the feeling of leaning left/off balance. I had gone out with my sister in the afternoon and we were walking and I'd be walking right into her. I'm not much for drinking (1-2 glasses of wine are my limits) but watching me yesterday was a hoot, looked like I enjoyed a whole bottle of the stuff.

I slept through the evening last night but today I'm still not quite myself, kinda like a hangover affect. Oh well....I also have an eye app't. to check on the affect this has all had on my eyesight. I used to enjoy reading, but between the shortened attention span and my eyes not wanting to focus clearly, I've all but given up except for the short stories in People Magazine. I had asked the onc. about that question, too. His suggestion was to wait till I was done with chemo to get my eyes checked. They might snap back to normal, but some of these side affects still continue after chemo, too. So I'm not waiting.

Thanks again, everyone for responding. Hugs to all and remember when those East winds start blowing in the middle of the night and you start leaning into the West, find something quick to hold on to or it'll take ya down!:-)

Sue

[Lisa]

Sue,

You probably don't know Mary Crawford, a good friend on this site. For a couple of weeks, she said she was walking "Like a drunken sailor." Unfortunately, a brain met had moved down her spine into her cord. She was soon paralyzed and died a few weeks later.

Of course, this is probably not your issue. But my recommendation is to get a brain MRI if you haven't had one recently. Also a torso CT. Then you can at least rule out the worst.

Love and light,

Lisa

[karenann]

I had a problem with my eye shortly after my 2nd herceptin treatment and after an MRI w/ contrast, a trip to the eye doctor, for an eye exam and, last but not least, a visit with a neurologist, it was determined that I was suffering from, ocular migraines. I felt certain, after all of the above, that it was probably nothing more. I am sure your problem probably stems from the taxol (which in particular can cause neurological problems) and herceptin treatment but (not to be an alarmist) I would request an MRI just to be on the safe side.

Karen

[Roz]

Like others, I too have trouble wiyth balance from time to time. I have been on Herceptin for 15 months now and it has got better. At first i was walking into walls and doors often. Now its only now and again!!

[Her2nSue]

Hi again,

I will be taking all your suggestions with me to the onc on Thursday to see if I get any response from him as to what the cause might be other than "side affect". I haven't fallen to the left since I last wrote, but my mind sure feels pretty fuzzy and my balance is o.k. as long as I don't move fast ;-)

Thanks everyone, will keep you posted. I can't tell you how wonderful it is to get ideas and opinions from everyone on this site. It's like getting hugs via internet! It's great!

Sue

[AlaskaAngel]

This past year I got bifocals but have not been wearing them much. Since the MRI I have been wearing them steadily to see if getting used to them would help, because it feels like there is sort of a delay in focusing and a loss of concentration and sort of brief nausea. But the bifocals don't seem to make any difference.

I'm very reassured by having the MRI results. But I still wonder what the problem could be. I'm not taking any medication or supplement that would cause that.

A.A.