Anyone else have balance problems long after finishing chemo?

otter

Hi, all--

I'm just fishing for information about unusual SE's of chemo-associated neuropathy. Mostly I'm wondering if anyone else has noticed a problem with their sense of balance (i.e., postural instability) after finishing chemo, and whether your docs said anything about that.

I had 4 rounds of Taxotere & Cytoxan a year ago (finished up in June '08). One of my mid-chemo SE's was very mild neuropathy. Mostly it was just a faint buzzing feeling in my fingertips and toes that appeared about a week after the 2nd-4th infusions and went away a few days later.

The only persistent problem I had was some very minor numbness in the tip of the big toe on one foot after round #4. A month or so later, that toe began hurting, as if I had stubbed it against something solid. Not a bad hurt--maybe only a 3 on the pain scale--but it was enough that I noticed it. Then again, if I hadn't been getting chemo and watching for SE's, maybe I wouldn't have noticed the buzzing/tingling or the numbness at all. The buzzing and numbness are all gone now.

In March of this year, I was referred to an osteoporosis clinic to assess my risk of fractures (I'm on Arimidex now). There, a physical therapist did some simple strength and balance testing. I flunked the balance tests. I could not stand on one foot with my eyes closed, and I could not stand with one foot directly in front of the other (heel-to-toe).

That was scary. I've always had very good balance and coordination. Poor sense of balance, and postural instability, increase the risk of falls (and subsequent fractures). The osteo doc didn't mention the balance issue when I met with her. The PT recommended some balance exercises, to "re-train" my sense of balance.

No one ever explained why my sense of balance might have become messed up. Now I'm wondering if it could be a subtle effect of the mild neuropathy I had from Taxotere. I have no pain, no numbness, no dizziness--nothing at all, except for this pesky inability to pass a roadside sobriety test.

Anyone else notice anything similar? I should mention that I've already done some googling, and there is evidence that balance problems can occur with peripheral neuropathy.

otter 

SoCalLisa

I had the same problem with different chemo..but

where I had treatment there was a post treatment

physical therapy assistance...the worst thing for me

was my balance...I had to do exercises there ..it did 

help alot, 

otter

Thanks, Lisa. I'm glad to hear you had access to PT to help with the problem.

My problem is that I've "graduated" from the frequent rechecks, and won't be seeing any of my docs until September. I do think I can work on the balance exercises myself in the meantime, though.

When the PT at the osteoporosis clinic pointed out my balance difficulties, I just assumed I was getting tippy because I'm getting old! I didn't connect it to post-chemo neuropathy until a few days ago. (That's what comes from reading too much when I have excess time on my hands.)

otter 

lisa-e

Otter, not to be an alarmist, but has it been determined that the balance difficulties are related to post-chemo neuropathy?   It seems to me that a new change in balance should be evaluated.

My mothers lung cancer was not diagnosed until it spread to her spine.  The presenting symptoms were changes in her balance, not pain.  I also know my primary care doc tests balance during  annual exams.   I haven't asked him specifically what he is looking for, but a lot of things  influence balance.

kathimdgd

4-27-09

I finished chemo in feb.2009,and i also find i lose my balance quite often.I havn't said anything to my dr yet,but i guess i should.I thought i was still just weak from going thru all this stuff.

I'll get it checked out.Thanks.

Kathi

dlb823

Hi, Otter ~ I've had an occasional incident since chemo where I've felt my balance was messed up.  For example, this past weekend I bumped into a wall (no, I hadn't been drinking!).  I was just sidestepping something in a hallway, and hit the wall quite unexpectedly.  I've noticed similar other little incidents -- like turning suddenly and just not feeling quite steady on my feet -- nothing serious enough to warrant any real concern, and something I've also attributed to still getting my strength back from chemo.

Not sure how they do that balancing on one foot test, but just trying it now with eyes closed, it was difficult for me.  I sort of had to practice a couple of times to be able to do it.  I'm with you on it most likely being a latent SE from chemo (I'm 6 mos. out), and have just assumed it would go away as I got stronger.   Deanna 

gcpommom

I, too, have some balance problems....not serious, things like clutzy footing, my foot falling sideways off my clogs or sandals when I'm walking (I always wore these kind of shoes with no problems before).  I do not feel dizzy or anything, maybe it could be better described as a slight coordination problem.  I will ask my onc next week.  I did 3 AC and am on my 8th of 12 Taxol; the problem started about 2 weeks ago.

Judy

maxgirl

I was seeing a neurologist for another reason and asked her about my balance problems and whether it could have anything to do with the mild neuropathy I have in my feet. 

 She said it was almost certainly caused by the neuropathy.  Part of our balance comes from the messages we get from our feet about where we are in relation to the ground.  The nerves damaged by neuropathy aren't sending this message as well.  I told her I feel I have tp "get my feet under me" when I stand up suddenly or turn around, and she said that's what it would be like.

 Otter, I've flunked the closed-eye balance test, too, and it's because I'm not getting the right information from my feet.

RIV54

I've had balance problems since chemo, TAC. I just take in stride, nothing works like it used to pre bc. Its my new normal.

ktym

Otter.  I was a 4 TC person too.  Neuropathy started mild after 2nd cycle and really didn't get bad until a month after chemo.  Come to find out after reading more it may not peak until 4-5 months after chemo.  Maxgirl's neurologist echoed what I've heard too.  I did a lot of ballet, gymnastics etc when younger and as a result really got used to using my feet to give me signals for balance.  This has really put me off.  When we go walking my husband learned to stop before pointing anything out, I'd turn to look where he was pointing and would fall off the sidewalk.  I have to watch the ground and where I'm going or fall flat on my face because I don't feel the bumps etc like I used to.  The yoga seems to be helping in retraining some of the other muscles to compensate and help. 

Anyone else notice this?  The morning is the worst.  Find myself delaying getting out of bed because I know the feet will hurt.  Once I'm up and moving around they'll get better, but the more I'm on them through the day the more they hurt again.  Need to work on finding the right balance I guess.  

gcpommom

I am not done with chemo yet, but have not had much problem with neuropathy yet.  My legs often feel weak, and heavy, especially at the knees, so I am putting my coordination problems down to that for now.  I am able to do the closed-eye test so I guess it's just the leg/knee muscles causing my problems.

chumfry

I have the same problem. I've never been very graceful, but now I'm just plain clumsy on my feet. I have a little residual neuropathy in my toes and I'm sure that's what's causing it. My last chemo was in August 2007.

otter

I have a funny (= grotesque) story to tell about loss of balance.

Yesterday, I was working in the yard when dh called me to come and look at something.  He had been digging a hole earlier in the week.  It was about 2 feet across and maybe 3 feet deep; and he had covered it with a sheet of plywood so nothing would fall in (which turned out to be ironic).

When he flipped up the plywood to continue working on the hole, there was a little salamander in the soft dirt alongside the hole.  He knows I like critters, so he called me to look at it.  I was worried it might fall in the hole and not be able to escape, so I reached to pick it up .... and of course it fell into the hole.

Now getting really worried, I stuck my arm into the hole to grab the salamander, but I couldn't quite reach it.  So, I leaned a little bit farther and stretched my arm ever so much, and ... I tipped over, into the hole!

My right arm and shoulder and my head were in the hole, and I was trapped there because I was off-balance.  I couldn't push off with my right hand because I had the salamander clasped in that hand and didn't want to squish it.  My dh had to grab me by the belt and other shoulder and pull me out.

<sheesh>  So embarrassing.  It was a good thing he didn't take time out to run into the house and get the camera. 

Everyone lived happily ever after, but I'm sure this occurred because of my balance problems!

otter

ktym

Oh Otter, I'm so sorry that I just laughed so hard reading that.  You just told it so well I could just picture it.  The things we go through--like everything else and still growing out our hair isn't enough we're still dealing with this too.  I think it belongs on the road to hell thread.  Thanks for sharing, DH and I had just looked at another pile of bills and what the insurance company was and wasn't doing and remembering to keep a sense of humor about the whole thing was very timely.  Hope the salamander survived ok.

maxgirl

Best laugh of the day, Otter!  Thanks for that! 

Cif

I know old post, but replying for folks with recent issues from chemo. I too was athletic and great balance, highly educated, articulate, independent person. ER+ and HER2+++ diag Sept 2013 first chemo Dec 2013 resulted in loss of balance, now nov 2017 and not back, just had to adjust life to be safer. By chemo 3 lost ability to speak and by 4-6 lost memory, ability to read write. I am relearning so much. Sadly the ONO's still say unrelated to chemo, but every other doc I encounter like neurologists, dentists, nurses all guess I had chemo before I even tell them. At this juncture I believe onocologists greatly lack knowledge of the toxic impacts and their arrogance to avoid it. The amount of money and loss of lifestyle to relearn things or live without job, or hire to do easy things I used to do is costly, replacing teeth, hair, hiring tutors, hiring PT to help me is all out of pocket because the ONO's say unrelated to chemo. Grrrr, ran 5 k a month before chemo, loss of balance immediately after chemo, each symptom added after each chemo. Sadly lost intellegience too, so I was too far gone to think to change doctors before the 7th chemo, luckly family pushed change and new ono immediately dialed down the dose and many things got better but damage was perm, but could have been worse if not changed doc's for 7-18 treatments. I'm convinced after this many years that onocologists are the least knowledgeable of chemo compared to soooooo many other doctor types and nurses. YOU HAVE TO BE YOUR OWN ADVOCATE WITH ONOCOLOGISTS, if you already got damaged that ability may have gotten fried like mine, SO ALWAYS BRING AN ADVOCATE WITH YOU TO EVERY APPOINTMENT and treatment. The brain can become whimpy and needs an advocate to protect you. I used to be mover and shaker, very intelligent, high achiever, articulate with both oral and written. Now I have to use tools and guesses to communicate, home bound until I figure out solutions to balance issues, and family has limited to activities I'm allowed to do alone because of stupid brain farts like leave burners. oven, water on, or wash something still plugged in that should not be washed anyway. I went from a multi-tasking, high functioning, wife/mother/caregiver to instead a person in the house that barely get things done in one day or week or month that used to just take less than an hour. IF YOU AT THIS POST - GET A SECOND OPINION RIGHT AWAY - NEGOCIATE A LOWER DOSE - MAKE SURE THEY ARE SUBTRACTING AT LEAST 3 POUNDS OF Weight for clothes, etc. Onocology will say that a few pounds does not matter - NOT TRUE AND I AM PROOF. Sure maybe 3 pounds does not affect a person's doseage if they are 130 pounds or more, but if your a 100 pound person and a dose for three more pounds just DOES make a difference. Plus they would not test me for metabolism of medication that the World Health Organization is trying to mandate be done by all onocologists before the first chemo. There are genetics involved in metabolism of things, and a simple test timing between some type of sugar and when it appears in urine could have saved my brain, my body, my family, and my job.