#97307 06-13-2009 09:50 PM | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2009 Posts: 54 | After 1 week of IMRT told to stop talking because voice almost gone. I was shocked at how fast I was affected. Since I'm 350 miles from home, I save it too talk to my husband every evening for a few minutes.
My daughter is my caregiver. She is a 2x Hodgkin's survivor and 4 weeks rad treatments. She's here from England and we're staying with my sister and her husband. Its a real family affair.
Only 26 more treatments to go. I've stopped producing saliva on the side of my cancer. That leaves me a really dry tongue, cheek and throat. Dry, dry, dry. Drink, drink, drink. Sucks, sucks, sucks.
Sweetpea ******** 2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33 | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Sweetpea, it does suck and I'm sorry you are having a rough go of it. I had to whisper for the better part of 3 months and like you lost the glands on the side of my tumor. Hang in there though, you can do this, if I did it you sure can.
I'll tell you this though, after treatments it does get better. I chew gum and have a spray that helps keep my mouth nice and moist (both Biotene). Just keep applying the aloe moisturizers to the radiated area, keep the lip balm flowing and you'll do fine.
Keep you chin up soldier, I'm pullin for you!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | How's your voice now? Was that a temp thing, or is it pretty gone for good during treatment (of course you can't foretell the future...)?
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | 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 | My wife tells me that was the best part of my Tx. I wonder what she means by that?
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 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | I lost my voice periodically during treatments but usually only for a day or two at a time. Completely concur with your last paragraph!
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I also lost my voice for a time, it was not so much loosing it as it hurt to talk. Still there were notepads and hand signals..... (so I am told)
What helped me temporarily was viscous lidocaine, although I only needed that later on. It seems you are quite sensitive to the radiation to get these effects that early. Make sure you have adequate pain control lined up.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | GM, My voice loss was temporary for a day or two. It came and went, off and during the last couple weeks of Tx and first week after.
For me it was not painful.
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 |
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2009 Posts: 54 | My voice is down to a whisper. Saw Dr yesterday and it is probably gone for the duration. Mouth doesn't look too good and very hard too swallow. Feel like my throat and larynx have been scorched. Starting on magic mouthwash. I probably shouldn't take up fire swallowing.
Sweetpea ******** 2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33 | | |
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