| | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 51 | Approximately 95% of my husband's voice is gone due to radiation. I've heard of people not being able to talk because of pain issues or from the mucus. Paul isn't from either. He says his voice box doesn't work anymore. Has anyone heard of this? I know it's different for everyone, but if you've had this problem, did the voice come back. I'm concerned the damage may be permanent.
Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Kevin's voice changed pretty drastically, but he never lost it. Now it's very deep.
Have not heard of this but hopefully others will have.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Has his voice completely gone? Or is it just reduced to a whisper? If he can still manage to whisper I'm guessing that this is due to inflammatory changes from the radiation, the resultant oedema of all the tissues in his throat/neck, and will improve as healing takes place . Have you discussed this with his RO?
In the meantime he could use the Speakit app on IPad to help with communication.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | I found that my voice pretty much disappeared toward the end of RT. I could whisper, that was about it. But it came back within, hmm, I'll say a month or so after treatment. Maybe a bit more. Do ask your docs about this but my first guess is that it's a normal response.
Oh and similar to Kevin's situation, my own voice deepened about two years out from treatment. Over the course of the second summer I gained 4 notes on the bottom. Now I can sing bass. Not that you'd want to hear me do so, of course.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | This is very common. I lost my voice for about 3 weeks. It was not from pain or discomfort when speaking, it was just gone. I would attempt to talk and nothing would come out. This happens to many patients towards the end of treatments and the beginning of recovery. Its only temporary, his voice will return.
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: 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 lost mine during treatment and it came back in a few weeks. I lose it from time to time when the weather changes in the spring. I lost it about a week ago and not too worried yet.
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: Sep 2012 Posts: 51 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 51 | Thank you everyone. Right now when he does talk only about every 4th or 5th word actually comes out. Some days he can get a full sentence out.
Diane-wife to Paul, age 55
DX 9/17/12
HPV/SCC/BOT Stage 4a
Non-smoker/casual drinker
Otherwise healthy
9/24/12 Cisplatin, Taxotere,5-FU - 3x
12/3/12 Rad x 35/Carboplatin x 3
1/15/13 DVT upper thigh
Passed away 1/23/13
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