| Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | I am 4 years out from Treatment.. I had Cisplatin like so many ouf you. I have hearing loss. I was wondering if anyone has went in and got hearing Aids? I did ask about them years ago, but it would not have helped with the back ground interference. Now days they have come a long way and I understand there might be some hope. Does anyone have and information on this? and of course any Ins. information? Thanks ... Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I to have high freq loss from Cis but I guess it's not bad enough for me to seek hearing aids or I'm to vain, probably a combo of both. When in doubt I just nod and pretend I know what they just told me. I usually catch up in a short time.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Thanks David, I justed wanted to know if anyone had much luck with one. Not just a regular hearing aid, but one of the newer ones. I can hear but it is very difficult in a crowd or in a car. Well as far as nodding to this and that it does work until someone looks at you Funny.  Then you know you just answered wrong!! I do not have any hang ups about having one. I worked with the deaf community years ago and I know how valuable being able to hear is. Also understand how frustrating it can be when no one understands you. Thanks,,, bye for now.. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I don't have hearing aids but did have to get tubes put in my ears for HBO treatments. They help the hearing like there are imegaphones in them around loud noise.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | I think this is a great question! I'd be interested in some of the responses.
I too got cisplatin and shortly after noticed some hearling loss and ringing in the ears. I had water in my right ear that muffled sounds then it cleared up. I got sick in December and the muffled sound came back. I can hear but it's best if you talk closer to my left side. I've been also been getting a ear popping sensation (like on a plane), I see the audiologist in a couple of weeks so I'll ask about the hearing aids!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | I have not followed this up yet. When I do I will post what information when I find out. I have been really busy lately with other issues.
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi,
Well, I will be having hearing test on June 30th. I will find out if there is any chance of improvement for hearing. It seems like my hearing has become worse. I seem to have more ringing!!
I will report back when I find out some information. Thanks for waiting on this with me. Take care, Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi to all, OK, this is my first day with new hearing aids. I will be going back for adjustments in a week. For the first time I could hear my Turn signal in my car. The hearing aids of today are so much better than they were long time ago. Like anything else you must get use to it. Also you can not even see it for those concerned. I have already noticed I can turn down the TV. I will have to do the same on Husband. Ha ha.. I look forward to testing it out in large crowds or a restaurant. I will post back off and on to let you know how I am doing. The one I have is by Phonak Audeo-Yes. Here is the web site about it. http://www.phonak.com/us/b2c/en/products/hearing_instruments/audeo_yes/features_and_benefits.html I hope this will be of some help to others. I have a friend who has same hearing Aid and has problems with back ground noise & loss of high frequency. I wear glasses and it does not interfere with that. I also have an ear peace for my cell phone which does not interfere with that either. So far so good.  Take care Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 65 | speaking of hearing aids, while I don't need them (yet) a friend just got a pair and they have 4 different programs that he can adjust and select by just touching one of them. One setting focuses them on sounds that are really close to you, and masks everything else - another does the exact opposite. Too cool. He is still messing with them to fine tune a setting that will be optimum with his aviation headset. We have come a long way....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Yes, the new digital hearing aids are so much better..as a child I remember my grandfather pulling out the speaking peace for us to talk into.
Bill opted for hearing aids last year amazingly not due to the cisplatin treatment (baseline tests proved that) but an earlier assault on his hearing (some sort of weird vascular issue.)
His aids are very small...programmable and adjustable depending on surrounding conditions like Brian mentioned, for instance, in a noisy restaurant when you just need to hear the people at the table with you and not the background. He just touches the little piece that hides at the back of his ear and it goes to the program he wants. Most people don't notice them.
Only problem with the new top of the line hearing aids is cost...they are terriby expensive ($5000 in our case.) It was a quality of life decision to get them (and quality of marriage!) They are susceptible to moisture...don't recommend taking them into the shower as Bill has forgetfully done.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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