Capecitabine (Xeloda) and Hearing Loss ?!?!?!

[SteveNZ]

After being on Xeloda (as treatment for rectal cancer) plus radiation therapy for just over a week I have had this icreasing ringing in my ears. I thought I was having some hearing loss just from finding normal conversation difficult. It came to a head when my lovely wife came in and told me I had the television so loud and was on full volume. Which it was, but needed it to hear normally!

It happened to both ears and a Dr found no sign of any ear infection!?
She placed me on antibiotics just in case of any hidden infection.
The treatment staff had never heard of such happening with Xeloda.

Have other folk met this at all?
Could it be permanent?

[NHMike]

I have never heard of hearing loss as a side-effect of Xeloda. I took it for six weeks for Neo-Adjuvant and I've taken it for six rounds of Adjuvant Capox.

[SteveNZ]

POSSIBLE ISSUE - EPILEPTIC
I also should add I am epileptic (well controlled) and am on the drug Dilantin (Phenytoin) which may be linked.
But the specialists took considerable care to check on interaction between the drugs.

I admit that it is the unknown about this effect that is a bit un-nerving.

[Caat55]

This is my new mantra, avoid folic acid. It is added to grains, flour, cereal as it helps promote neorutube development in utero. Since the chemo seems to cause nerve stuff, it makes sense to avoid anything that facilitates the transport of drug to cells. The ontological nurse and pharmacist both told me specifically to avoid while taking Oxilaplatin. Pharmacist said post therapy it would be good and Actually beneficial post treatment.
I did experience some ringing but it's not constant, only a few times, I wonder if this process makes us hyper sensitive to the things going on in our bodies? Question everything.

[O Stoma Mia]

After being on Xeloda (as treatment for rectal cancer) plus radiation therapy for just over a week I have had this icreasing ringing in my ears
...
The treatment staff had never heard of such happening with Xeloda.

Have other folk met this at all?
Could it be permanent?

Yes, ringing in the ears can occur with Xeloda. It is one of the rare side effects that occurs in less than 1% of cases:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490

http://factmed.com/study-CAPECITABINE-causing-TINNITUS.php

This condition is called TINNITUS, and you can do a search for it on this forum to see other people who have had this problem.

And yes, in some cases permanent hearing loss can occur after chemo, but it's not very common. I'm telling you this out of personal experience.

[CRguy]

Respectfully ... I will jump in here with a bit of clarification ...
and just throw some points out for discussion :

folic acid is added to prevent neural tube defects ... so it is cheap and easy to add to just about damned near everything in the western diet

folic acid supplementation is NOT needed by most folks, above and beyond what we would normally ingest as natural folates .... with a balanced nutritional diet

folic acid does not have known interactions with Oxaliplatin

folic acid HAS known interactions with 5FU and / or capecitabine (Xeloda) in increasing their blood levels, to make them "more effective" ergo potentially more TOXIC

folic acid should be restricted with 5FU / XELOX / CAPOX therapies ... BUTT not because of the Oxaliplatin use

to my knowledge there is no "neuropathic" etiology for tinnitus based specifically in folic acid therapy with or without chemo ??????

I had tinnitus prior to CRC diagnosis and it continued during and after therapy

tinnitus is NOT the same as auditory acuity / sensory loss ... BUTT many folks with tinnitus also experience hearing loss

we always need to be wary of " conclusions based on correlations without causation ...." JMO

OK I'm done ..... gotta go now ..... I hear the phone ringing .....
it IS the phone isn't it ????

Welcome to my world also, my friends

cheers
CRguy

[SteveNZ]

My tinnitis worse again and with a growing hearing loss......
RATS

I am pretty sure it is the chemotherapy as over the weekends and a recent NZ holiday (when not on chemo) the effect dies down quite a bit then, up it goes with the medication.
I see the specialist tomorrow so will discuss it then. He is very helpful and I trust him.
Starting to feel 'really rotten' so finding ways to laugh and smile.

SMILE EVENT 1: My dad and step mum are in a nice old folks home, nearby to where we are staying. *I live in another city so do get to see them much. So I get to see dad which is great. He is getting older quickly and both dad and my step mum are getting rather forgetful. They 'bicker' a bit and the other day while at it they forgot what they were arguing about and had to argue over what they were arguing about. It was cute ....Bless them both.
SMILE EVENT 2: Due to differences in health requirements my dad and step mum are in different parts of the home. But they can see each others window so dad waves to her each morning at the same time. *Haha - This is a favourite 'bickering' issue for them both as to whether he waved or not.

[Soccermom2boys]

Starting to feel 'really rotten' so finding ways to laugh and smile.

SMILE EVENT 1: My dad and step mum are in a nice old folks home, nearby to where we are staying. *I live in another city so do get to see them much. So I get to see dad which is great. He is getting older quickly and both dad and my step mum are getting rather forgetful. They 'bicker' a bit and the other day while at it they forgot what they were arguing about and had to argue over what they were arguing about. It was cute ....Bless them both.
SMILE EVENT 2: Due to differences in health requirements my dad and step mum are in different parts of the home. But they can see each others window so dad waves to her each morning at the same time. *Haha - This is a favourite 'bickering' issue for them both as to whether he waved or not.

Thanks for sharing these, made me smile as well! Well, sucky as it is to have cancer, at least you can find a positive like being able to see your dad more often.

I read your original post and it was interesting to read about how the process works in NZ for treatments—so glad you are being well cared for and have your wife and fellow “inmates” as you called them to sympathize with. Love your sense of humor!

[O Stoma Mia]

...I see the specialist tomorrow so will discuss it then. He is very helpful and I trust him...

Given your situation, I think it would be a good idea to get an audiogram done right now so that you have a proper baseline showing the type and extent of hearing loss that you have at this point in time (i.e., now during the chemo/radiation regimen).

If you indeed have some hearing loss now, it might get even worse when you later transition to an adjuvant therapy regimen that contains oxaliplatin, e,g., FOLFOX or XELOX(CAPEOX), because there is much more solid evidence that platinum-based chemo regimens (like oxaliplatin) can lead to hearing loss due to a type of peripheral neuropathy that affects the ears.

In my case, my hearing deteriorated after XELOX chemo, and the post-chemo audiogram showed significant hearing loss in the upper frequencies in both ears. But since I did not have any baseline audiogram done prior to starting chemo there was no way to formally attribute the loss to chemo or to anything else.

I think you also need to do this right now so that if there are any possible treatment options available that might help, you can find out about them before it is too late. For example, there is some evidence that Vitamin B12 deficiency can be linked to certain types of hearing loss. Maybe a program of B12 supplementation could help. You can ask the doctor about this.

[weisssoccermom]

Just an FYI......platinum based drugs such as cisplatin, oxaliplatin, etc. can cause damage to the ear (cochlea) in about 40 - 80% of all patients. When I first was diagnosed, I joined an internet support group for anal/rectal squamous cell cancer, not realizing that it was any different from the 'typical' adenocarcinoma rectal cancer patient. Most in the other group were on cisplatin and most experienced some form of hearing loss, ringing in the ear, etc due to the cisplatin. It is a common side effect of cisplatin AND other platinum based drugs.

Never heard of this happening with just Xeloda but yes, have heard of people complaining about these same problems with XELOX (FOLFOX).

[O Stoma Mia]

... I see the specialist tomorrow so will discuss it then....

What kind of 'specialist' is this? A neurologist? An audiologist? Some other kind of specialist?

It seems to me that your hearing problems might be due to a certain neural fragility related to your epilepsy and that this may cause your hearing-related nerves to be exceptionally susceptible to damage from outside sources. It seems to me that a specialist who understands the dynamics of epilepsy is what you might want -- but this is only a guess.

There are some scientific articles out there on epilepsy and hearing loss.

Most people on capecitabine do not experience hearing problems. If they do, then it might be better explained by other external factors.

[SteveNZ]

... I see the specialist tomorrow so will discuss it then....

What kind of 'specialist' is this? A neurologist? An audiologist? Some other kind of specialist?

Hi,
You will see from a topic I just put in that recently I had this TIA (stroke that clears with no permanent blood clot). I think likely linked to it all?
The whole 'health battle' for myself is going to be quite a ride.
The one good thing about the hospital is the interaction of many specialists with notes showing how group one contacts another division for input.

[CRguy]

AMEN buddy
plan your work ... and then WORK YOUR PLAN !!!!!

= WORD

I posted into your other topic as well

Keep on ... KEEPIN' ON !

Harmony
CRguy

[lakeswim]

Just an FYI......platinum based drugs such as cisplatin, oxaliplatin, etc. can cause damage to the ear (cochlea) in about 40 - 80% of all patients. When I first was diagnosed, I joined an internet support group for anal/rectal squamous cell cancer, not realizing that it was any different from the 'typical' adenocarcinoma rectal cancer patient. Most in the other group were on cisplatin and most experienced some form of hearing loss, ringing in the ear, etc due to the cisplatin. It is a common side effect of cisplatin AND other platinum based drugs.

Never heard of this happening with just Xeloda but yes, have heard of people complaining about these same problems with XELOX (FOLFOX).

I have tinnitus already and I am supposed to start with Folfox. Do you think I should get an ear exam before I begin?

And I appreciate this forum so much. Yet it's daunting. It helps me learn yet also brings up things (usually scary) that I didn't know.

[weisssoccermom]

I have no idea....I can only tell you that platinum based drugs such as oxi can and do cause ear issues. IF you are worried about it....talk to your onc about potentially doing a different combo such as FOLFIRI (irinotecan instead of the oxi). IMO, don't expect oncs to be totally forthcoming about potential problems with the drugs. For example, over the years that I have been on this forum, I can't begin to tell you how many members have said that there oncs claim that the neuropathy from oxi just doesn't happen. WRONG! Then there's the rad oncs who just conveniently forget to tell females about the side effects of radiation on the female anatomy.

If you have an ENT that you see on a regular basis, perhaps talking to him/her is a good idea before you start and voice your concerns.