| | Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Sep 2013 Posts: 40 | Thank you all for your support. I had my second dose of cisplatin yesterday. A lesser dose weekly for the last 4 weeks. I haven't been nauseas yet, losing some hair on the back of my neck. The ringing in my ears seems the same, or a little bit louder. I'm not sure yet. The thrush seems to be getting a little bit better, so I am able to swallow a little more. Not enough though. The PEG goes in tomorrow. I will continue to swallow throughout. I just couldn't imagine not being able to eat the way I used to. ..Today is hump day for me as far as Tx goes. 18 days down,17 to go...
But I know it certainly doesn't end there.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Thrush is the worst. I had it four times. I still have a bottle of swish and spit meds. I thought it worked a lot faster than diflucan.
The peg will make it easier to get food and water in. Please keep sipping water or boost everyday. You are entering the tough month. Keep in mind all you need to do is get thru the next feeding. Then set the clock and do it again. It sucks, no doubt about it. But days turn to weeks then the tough month is done.
Good luck and keep us posted.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I have had thrush dozens of times over 10 years. It just doesn't completely resolve for some.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Talk to your doc in detail about the continuing of cisplatin with the ringing in your ears. If they still insist on giving you more of that chemo, I would at that point go over their head and speak to whoever is in charge of the oncology dept. The ringing in the ears is a known side effect which and cisplatin is known to cause permanent hearing loss in some people. It needs to be changed! Sometimes its so hard being the patient and having to stand up and advocate for yourself. You can do this!!!! Keep swallowing and drinking water several times per day every single day even if it hurts. Keep up the 2500 calories and 48 oz of water daily and you will sail right thru. Best wishes!!! PS... Here are some articles you can print out and take right with you when you speak to your doc about the hearing loss. Cisplatin Clinical Trial on Hearing Loss Cisplatin Side Effects Cisplatine Injection Article ACS Cisplatin Info
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: 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've posted on this before but that ringing is actual damage being done, mostly permanent, to your hearing. I have permanent high frequency hearing loss due to Cis and while I don't need hearing aids this IMO avoidable treatment side effect affects my life daily. The longer you are given Cis the greater the damage to your hearing.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I also had Thrush multiple times post Tx. Really nasty stuff and those horse pills you have to take.... Anyway after repeated infections finally my dentist said "perhaps you should try eating Activa every day to balance the bacteria in your mouth." Coincidence or not I started eating a cup of Activa every day and have done so now for years and I haven't had a bout of Thrush since.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2013 Posts: 40 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Sep 2013 Posts: 40 | Would Carboplatin be less damaging to my hearing, or is it the platinum that causes it. I will ask my MO. He may suggest only one more dose of cis. and be done, but at this point I want all I can to rid myself of this cancer. With as minimal side effects as possible. Thanks All.
Age 54 at DX 06/20/13 Left Neck Mass 07/11/13 DX SCC OC T0N2bM0 Stg IVa p16 neg. 08/09/13 Tonsilectomy and Adnoidectomy, Panendoscopy. Unknown Primary. Begin RAD 09/30/13 Cisplatin 10/01&22/13 PICC 10/21/13. PEG 10/25/13 to 1/24/14. Erbitux x 3. End 35 RAD 11/22/13 Clear PET 02/25/14
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Yes carbo is a good alternative to cis and doesn't cause the ear damage. They put my father in law on it for his esophageal cancer as he has bad hearing to begin with. best of luck
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: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | You should be able to get a hearing test and they can determine the extent of the damage to your hearing at the moment. I've had 5 different tests or so. My mo moved me to weekly cisplatin for the last dose. Still have ringing in my ears but only have slight hearing loss at the " inaudible" range although I try to still use that excuse around the house, with little success.
Last edited by AndrewL; 10-24-2013 08:54 PM.
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
| | | | | 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 | AFTER 3 Cisplatins I told my MO at Moffitt re the "ringing" in my ears and he said "I wish I had known that I would have switched you to Carboplatin because it's just as good but without the hearing loss side effect." I was stunned and my obvious reply was WELL WHY DIDN'T YOU GIVE ME CARBO TO BEGIN WITH??? He said that Cisplatin is the Gold Standard for Head and Neck and Cis doesn't affect everyone so we wait until the patient starts to hear the "ringing". Keep in mind that was 7 years ago but it doesn't appear much has changed.
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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