| | 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
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
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.
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
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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