| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | They told me not to rinse at all just go to bed.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | Angelia, dont forget everyone is different. We all respond to treatment a little differently than someone else. A few on here sailed right thru tx. Think positive!!!! 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: Nov 2009 Posts: 1 Member | Member Joined: Nov 2009 Posts: 1 | my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected hpv16 type he started chemo on oct 26 and radiation the next day decided against the surgery and is scheduled for Cisplatin x 3 with concurrent IMRT x 35, (50 Gy) the main problem right now is that it is affecting his hearing which he has now been told is irreversable has anyone else dealt with this and found a solution?
My brother's UPPER end hearing loss is already being affected (in the 8k-10k range). He also has tinnitis kind of nasty.
Cisplatin is a highly nephrotoxic drug that helps shrink tumors while also wreaking havoc on hearing.
The effects are: a) cumulative (the more you have, the worse it gets) b) irreversible c) progressive for up to five-ten years after treatment and, d) not helped by hearing aids.
He's learning this later than planned on. Like after his first treatment of chemo with Cisplatin. any advice would be appreciated | | | | Joined: May 2009 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2009 Posts: 35 | I have a similar concern as with the case of maureenbe's brother. I had 3 cisplatin sessions, May this year, at 3-week intervals together with my 30 daily RT sessions (which I already completed June 1st).
I'm a newby to this forum and was not aware that cisplatin had hearing side effects, until I read a few posts about this. In fact, only recently had I noticed hearing ringing noises, like right now as I type this...faint, background-like continuous high-pitched hissing sound which seem to come from the direction in my upper left ear...the kind you experience after being exposed to loud noises for some time, and then went to a relatively quiet place.
So if anyone had a similar experience, I'd like to find out the extent of the side effects of cisplatin on hearing.
Thanks.
Jojo
Diagnosed: 16Feb'09 Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0) Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG Decanullation: 24Mar'09 IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09 PEG out: 23Oct'09
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | I think if you look at Davids posts you will learn quite a lot about this problemas i understand he still suffers from high pitch hearing loss from cisplatin,and i know he always mentions it to people about to start chemo using this drug.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Christine, thank you. I am trying to remember tjat I may not have any problems, but the side effects my RO talked about do not make it sound promising that I won't have them. I just do not know qhat I am going to do for three months not working. My RO does not want me teaching during seasonal flu season since my immune system will be shot.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | 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 | Angelia.... For those three months I know what you will be doing. Taking care of yourself! For the first month you probably will feel weak. After that its a little better everyday. I know you will get thru this just fine. Your age plays a big part in how fast you will bounce back. You are young and sounds like otherwise a healthy person which will make it easier for you. 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 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Angelia and anyone else on Cisplatin,
If you experience any kind of hearing loss or ringing in your ears, you need to let the doctor know immediately and they should switch you to carboplatin which does have this side effect.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | 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 | Maureenbe and Jojo,
In the future please start a new Topic if you want to get the maximum feedback and not have to read other comments that don't concern your particular topic.
That said, yes Cisplatin is known to have the potential for causing permanent hearing loss but like so many things associated with this cancer's Tx, it doesn't affect everyone or affect everyone the same way. It's a shame that all MO's don't warn everyone or don't prescribe a pre Tx hearing test so that the damage can be more easily defined, but they don't.
The damage seems to be associated with the "ringing in the ear" symptom so as Eileen said as soon as you think you experience that notify your MO and perhaps he will switch you to Carboplatin which is supposed to be just as effective as Cisplatin but without the side effects. I know what you're going to ask but don't because no one can give you a reasonable answer to that other than Cis has been around for a longer time and therefore is more tested and of course the goal is to kill the cancer so I guess that's why MO's continue to use Cis vs 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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I will talking to my ENT and my MO about pre-TX hearing screening. I have yet to meet the MO. I go see him Tuesday. It just seems like it is taking way to long to get things done. I would like to start kicking this thing now.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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