#84145 11-14-2008 10:53 AM | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Has anyone ever had a problem in their ears with noises they are hearing? I am hearing a ticking type sound ever once in awhile and I get to hearing a swishing heartbeat sound in both ears for hours at a time. But most sounds seem to stay mainly in the left ear. It can be very bothersome at night.
Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Joined: May 2008 Posts: 551 | Angel,
One of the most common side effects of cisplatin is damaged hearing. You should let your oncologists know about anything that is slightly 'off' in your hearing.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Joined: Sep 2006 Posts: 8,311 | I ended up with permanent high frequency hearing loss. It's not so bad that I need hearing aids but there are some things that I have trouble hearing and some things I can't hear at all.
You are the first person on this site that has complained since they mostly switched to the weekly method.
Tell your doc right away and he may switch you to Carboplatin which is supposed to be just as good as Cis but without the nasty side effects..... Don't ask!
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.
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Joined: Nov 2002 Posts: 3,552 | As I'm sitting here I am hearing a ticking/popping noise and constant background hiss. Fluid build up behind the ear drum is very common post Tx. Mine is probably from band practice last night.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | Angel:
As David and Margaret said, your hearing can be affected by cisplatin. This is something that does permanent damage, make sure you tell your doctor before you get another dose.
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: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | I certainly feel for those who have ear problems. Like Gary I play in a band and have been a trumpet player since I was 12. I also choose a profession that is notorious for hearing loss due to the constant "whirrrrr" of the dental drill. ( you all love that sound...I'm sure)
I don't have a cure but, felt I would chime in and let everyone know that even "normal" (Ok ya'all know I'm not normal!) can suffer irreversible hearing loss. I have constant ringing in my ears and it drives me crazy. My audiologist fitted me with noise filters 5 years ago but I don't wear them as often as I should because I can't stand the feel of them and can't hear when people talk to me.
Going deaf...slowly but surely.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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Joined: May 2008 Posts: 219 | Thanks all, I do appreciate the information. Might have known this would occur to ask someone before it is Friday night and the week-end is hear so I can't talk to my Dr. I did read something about the side effects and hearing but I didn't connect the two like I should have. I have a bad headache on the left side of my head today and for awhile now and ear bleeding from the left ear a couple of weeks ago. My radiologist and ENT both looked in my left ear and said everything was fine. They said I scratched my ear and that caused it, but yea I did scratch my ear when I felt something running out of it in the middle of the night. I also have been having some vision problems and low white blood cell count of 1.7 and am sick again tonight. Well there are only 2 weeks left, hopefully.
Also, what is a boost I have read about people here getting and what is it exactly supposed to do? Does everyone get one or would there be certain reasons why one would.
Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Joined: Jun 2007 Posts: 10,507 Likes: 7 | [quote=angels1313]
Also, what is a boost I have read about people here getting and what is it exactly supposed to do? Does everyone get one or would there be certain reasons why one would.
[/quote]
What do you mean????
Never used the quote before so sorry if it doesnt turn out right.
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: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Christine, Sorry about that, I meant to say a radiation boost at the end of radiation. When the office talked to me about cost involved she mentioned it would be a total of so much money unless he also does a radiation boost. Thanks, Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | 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 |
Oh!!!!
Now I understand what you mean. Yeah, at the end mine was done like that. What I noticed was that I was on the table for about 20 or 25 minutes instead of 10. I asked the tech and they said it was a more direct concentration. It was focused right on the spots where my cancer sores were in my mouth. If I remember correctly, it was only about the last 5 that were like that.
If you are struglling with paying, all large facilities have a finacial aid dept. They may help with your charges. I know someone indirectly who works in the financial dept of the hospital and they write off thousands in bills everyday. Also call the American Cancer Society, they may help you with the cost of medicines or even to help you cover the cost of transportation to tx. There are many things available to you if you know where to look.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Angel, As far as I know, I did not receive a radiation boost. All 35 treatments were identical. Of course, I slept through a lot of them so I might not have noticed...
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Angel,
Regarding the hearing loss...what's done is done...you can't take back that last Cisplatin treatment but before you have your next chemo, make sure you see the doc and tell him your symptoms. He will most likely change you to Carboplatin to lessen the hearing problem. Just make sure you see him prior to the chemo treatment, even if you are not scheduled.
Bill's blood counts dropped pretty drastically. You need to be aware of being immune suppressed and do everything possible to stay out of public places and exposing yourself to unnecessary germs and viruses. Wash your hands often, etc. Don't be scared about getting sick, just be a little more cautious than you regularly would. I am sure the nurses at the MO's office gave you a list of things to watch for, one being to call if you start running a fever over a certain degree. An infection right now is more dangerous because your counts are so low. Just be aware.
Good luck in the next few weeks...it's the hardest time.
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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Joined: May 2008 Posts: 219 | Deb, Actually the nurses did not give me a list of things to watch out for from either one of my Dr's. I couldn't go to a CCC so I got my care in the town I live in. I sure wish I could have gone to a better place for treatment. The radiologists are very nice and so is my chemo Dr. and his nurses. My Ent doesn't like me to ask nothing when I go there so everything I have as far as information goes is what I have learned here and what I look up on the web. I feel like they prefer to keep you in the dark and I don't like that at all as I want to be an informed patient. I don't like surprises and feel much better if I know what to expect.
Last night I had a bad headache on the left side of my head all night even though I took meds for it but it has eased up a little this morning and the noises in my ears are irritating. I am trying to get water down but just sick at my stomach even though I am taking the meds for nausea. I guess it's just what I have to go through to try and beat this thing. Thank you for your reply and others who have replied as it really means a lot. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Joined: May 2008 Posts: 219 | Christine, I have applied at the hospital for either a reduced payment or what ever I would qualify for. I have also talked with the American Cancer Society. But so far I have not found any help in paying my Dr.'s what medicare doesn't pay. Thanks, Angel
Dr. Mike and Gary, I am so sorry to hear that both of your hearing is bad. My Mom wears hearing aids and she is constantly having to buy batteries for them. She paid about $4,000 for the hearing aids and I say they way overcharged her as they stay torn up half the time, need to be readjusted, or the batteries don't last but a few days at a time. They're the type that is supposed to self adjust but they don't work. Thank ya'll for the information as well. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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Joined: Jun 2007 Posts: 5,260 | The only time I hear the swishing sound with the heartbeat is when I lay on my side while trying to sleep. Sounds like a boomslush thing. It does it until I roll over a few times and fall asleep. I neer mention this to the Drs becuse it did it before I was diagnosed. I'm just glad to hear that my heart is still chuggin away.
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: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Jim, I hear that! I have had 2 heart attacks and about 5 heart stents so I am glad to hear mine too. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | 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 never had a heart attack but this thing does skip a beat every 9 or 10 beats. Maybe that's their version of a coffee break. LOL
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Bear in mind also that the actual percentage of people having hearing damage from Cisplatin is relatively low. Subsequent hearing tests, that I had post Tx actually, showed an improvement in my high and midrange response from the baseline test.
But if you notice any qauntifiable change in your hearing, it is recommended by the drug manufacturer to let your doctor know immediately.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Gary, I can understand that. I come from a loud family but now when my son and grandchildred talk to me their voices are so loud that it hurts my ears and I'd like to to ask them to talk a little more quietly but it might hurt their feelings but the tone of their voices does hurt because it sounds louder that normal just for the past week. They didn't do a baseline test on me, but then again I am in a small town.
I talked to the on call ENT last night and she told me to call in on Monday and see my Dr. as soon as possible. Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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