Hearing loss...

Hearing loss is an unfortunate side effect both from chemo and radiation. Cisplatin is notorious for causing hearing loss and tinnitus. Aside from the nerve damage, some of the loss is also a result of damage to the eustachian tubes so they can't drain properly. It sounds as if you're underwater.

You're still early in the recovery process but it's a wise choice to get periodic hearing tests to judge the direction it's going. In my case, my hearing was borderline before I started treatment and after had gotten far worse. I lost my ability to hear high pitched tones especially women's and children's voices. This made my professional life difficult since many of my clients are women graphic designers and even when I sat directly in front of them, I couldn't understand what they were saying. Needless to say my wife was getting frustrated having to continually repeat herself.

After visiting several hearing centers, I settled on a pair from Costco. Since I am a salesman, I didn't want them to be visible. The devices are small, hidden behind the ear and a clear tube channels the sound. The brand is Resound if you're interested. Not cheap - but significantly less expensive than those offered by chains like HearX.

The hearing aids changed my life. I heard things that I didn't realize I was missing and I found myself straining less to understand the conversations around me. Now everyone grabs the remote to turn up the sound on the tv.

But my wife still complains I don't listen to what she says.

Treatment does change some part of your life. But the upside is that there are solutions available. Learning to be flexible and adapting to changing circumstances becomes part of the process.

Hope this helps.

- Jeff

JCF... sounds like you had the same treatment as I did about the same time. When everythig started they told me I may have some trouble with my hearing but made it sound minor and temperary....not what I would call full disclosure.

After treatment I had lost avout 30% of the high end of my hearing and had become very sensitive to louder noises. To the point I always have a pr of custom ear plugs to wear whenever I am oround anything overly loud.

Id I am listening to someone and can not see them speak I miss about 1/3 of what they day....wife sais with here it is more like 80%. LOL If they have an accent it is even more difficult as the brain has a harder time filling in the blanks.

I got fitted with hearing aids about 6 weeks ago and they help somewhat with the tone drop out (about a 53% to 30% inprovment according to tests) but does not help with the tinitus at all. This is the new normal for me which kinda sucks as I was a total audoiphile before.

All that said it sure beats what the alternitive would have been if i did not take the treatments

Good Luck

Bill

JC F said:

Hearing...

Thanks for the replies...I'm wondering, does the hearing loss plateau at a certain point and then just stay at that damaged level or does it keep gradually getting worse to the point that hearing aids are inevitable? I've been taking some pills for a couple of months, called "Ear Tone" by 'New Nordic', for the tinnitus. They seem to have helped somewhat, the tinnitus is still there, just not as noticeable. Could be I'm just getting more adjusted to the tinnitus. Really don't want to have to go the hearing aid route, but I guess I won't have a choice if it keeps deteriorating. Sucks...

We went last week for my husband's first ENT check up since finishing treatment in Feb. He had 3 Cisplatins and the radiation. 

Results were major fluid in both ears (sounds like his head was underwater, he only heard muffled sounds) AND significant nerve damage resulting in permanent high-pitch loss. Solution was to get tubes put in and drain fluid immediately-- that is a big help, he noticed right away he can hear much more. But the doctor did say as we were leaving, "I'll check you again in 3 months, and it's not a matter of IF you'll need hearing aids, but WHEN." 

So to answer your first question: if there is nerve damage from the Cisplatin, it could be irreversible. A hearing test at the ENT will give you that info. Best to you...

-Elizabeth

I chose not to have this chemo with radiation.  They could not give me a good enough argument to why I needed Cisplatin, but said it would be an adventure!  i opted for radiation only, which has it's own risks and misery, but I was not doing them together.  And by the way, MDA oncologist told me NOT to read about side effects! She said People claim to have side effects that she does not see. 

My husband also suffered hearing loss from cisplatin. He had about 6 doses. During the treatment his hearing was extremely sensitive to sound. It was painful for him to be in a room full of people. Talking at any level bothered him and even the sound of paper shuffling drove him crazy. The doctors continued on with the chemo even though we reported this. They did a hearing test before treatment in anticipation of hearing loss so that insurance would cover it. During treatment he had to wear ear plugs everywhere and he still carries them with him when he's out in public. I understand this isn't fun for him as a survivor, but I'm getting very irritated with having to raise my voice so that he can hear me. I'm a soft speaker and it's hard for me to change after so many years of speaking a certain way. I can't wait until he gets hearing aides! The TV is always too loud and I am very sensitive to noise. The doctors have taken a wait and see approach, but it hasn't gotten better. One doc mentioned something about tubes to drain fluid, but that hasn't happened yet. I'm hoping next time he will be getting an RX. Not sure how that works.

BUT yes, it beats the alternative...whatever you have to do to survive!

Best of luck to all of you!

My surgeon is doing a hearing test on me this month.  The L jaw area that I had radiated...I can tell a difference in my hearing on that side.  I also have noticed a ringing/buzzing sound in that ear more and more often.   He said that the rads hitting that general area along with a titanium plate going up to my ear could cause some hearing issues.  I'll guess we'll see the end of June. 

I never realized how many side effects come with treating this terrible disease. I guess it's better than the alternative.

I will have 3 cycles of cisplatin 3 weeks apart starting on June 21 - concurrent with 7 weeks of radiation 5 days a week hopefully starting the 20, but maybe not until the 27.  I am going for a hearing test on Tuesday.   I was told about the hearing loss...

Also - if you get hearing aids...work with a good audiologist. The first ones you try may not be the ones that are best for you. There are subtle differences and it takes a bit of trial and error to come up with the best manufacturer and model for you. a reputable dealer/audiologist will allow you to try different pairs over time to get the best fit. Your local speech and hearing center is a good place to start.

Barbara

Barbaraek said:

Hearing aids are great!

My husband definitely had hearing loss with Cisplatin - especially in the high frequency range. It was such a blessing when he got his hearing aids. They are so much better technologically now - they even connect wirelessly to his smartphone. There is also a small unobtrusive microphone he can place on a table during conferences and such. While the hearing loss is regrettable, it's a side effective can live with. The dry mouth is much more debilitating for him.

Barbara

Mrs. BD and I were at a Head & Neck Cancer reception at our Cancer Center and we received a sample of XyliMelts for dry mouth.  For me they worked amazing.  You moisten one side of the mint and stick it to your gum and it dissolves over twelve hours.  It was great not to wake up with a dry mouth (and a lot less bathroom trips)!  I have not found them at local Walgreens or CVS, they do have them on Amazon.