| | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | I have no idea if this is related to my OC or the treatment, but I've starting noticing this weird little whistling sound. At first, I thought my baby was wheezing, but then I realized that it was in my ears. I hear it when she makes noises and when I talk, although not every time. It is like a whistly little echo. Does anyone have any idea what I'm talking about? I'm seeing my MO tomorrow so I will definitely ask him but I was wondering if anyone else has experienced this. I've only had surgery and one dose of Erbitux so far. I don't think either of those cause hearing issues. Maybe it is tinnitus, but it isn't like ringing and it is only on the tail end of sounds.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | 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 | Sounds like what I experienced with Cisplatin which led to permanent hearing loss. Do mention this to your MO.
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 2011 Posts: 267 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | Thanks, David. Today my MO said Erbitux does not cause hearing loss but does (rarely) cause tinnitus. The whistling was gone when I woke up this morning and hasn't come back as yet. He said just to watch out for it and if it comes back let him know. Hopefully it was just a one time weird thing.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | I am doing cisplatin as well and have had two instances where a high pitched ring has popped up, lasted a few seconds, and then gone away. I have had them before in my life so I am unsure if they are related. For someone who has experienced this and knows for sure it was the cisplatin, what did it feel like for you? Did the ringing stay, was a brief episode, a series of brief episodes...?
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Cisplatin can permanently affect your hearing. Make sure you discuss this with your medical oncologist prior to getting another dose of cisplatin.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi I had a few nuances of whistling too - it would come and go - it hasn't come back nice I finished treatment - I was on cisplatin too!!! My hearing is fine so it might have just been a minimal side effect!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | 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 had the same thing and I ended up with permanent high frequency hearing loss. Doesn't require hearing aids but it is a PITA! If you have more chemo to go I would definitely tell your mo and they may switch you to Carbo.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have had whistling in my deaf left ear since the ENT put a hole in the drum. That stuff makes you crazy or maybe just a little goofy from hearing it so much. I know it's inside my head tho and something to live with. I hope yours has gone away permanently.Only good thing is that when a commercial comes on TV I can put a finger in my right ear and don't have to listen.
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
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