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#136395 07-06-2011 05:56 PM
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Hi,

Good day! I just finished 20 rad and 2 chemo (cisplatin) sessions. This morning when I woke up I could speak audibly. However, after I threw up (yes, the nausea/vomit is terrible), I found that I abruptly lost my voice. I can only whisper. Has this happened to anyone? Any suggestions greatly welcome.

The good news is I have 15 more rad sessions and 1 more chemo to go. Cannot wait to get it over with. Everything seems so different with the dry mouth, mouth sores, swallow difficulty, and now a lost voice. But I am sure, that there is light at the end of the tunnel....

Thanks for listening and offering any suggestions.

Best Regards,
Chetan


Chetan
SCC, lateral tongue, age 53, Tongue resection & neck dissection 5/6/11; T1N2BM0, RTX (35 sessions starting 6/8/11)/chemo (3x starting 6/10/11) Last cisplatin 7/22. RTX complete 7/27. PEG in 6/9/11, out 8/31/11
cs-scc #136396 07-06-2011 06:43 PM
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It is pretty common to lose your voice towards the end of radiation treatments. I lost mine for about 3 weeks, my kids loved it, LOL!

Hang in there, you are more than 1/2 way finished.


Christine
SCC 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 smile
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Sorry you lost your voice but great on he half way point !!! They to take it easy - the voice will return eventually!! Take care... Good 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
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My voice took on a Marge Simpson persona after about 14 treatments!! Gets worse if I talk a lot!! I have done 19 so far..got 13 left..woo hoo!! I can still swallow, and until a couple of days ago was eating normal foods like soups as I could still taste. However, that disappeared yesterday so now I am doing the Peg thing more...I can't eat what I can't taste! The one thing that bugs me is the thickened saliva..ewwww..it is so disgusting!

Good luck with the rest of your treatment Chetan...let's hang in there and soldier on!! Both of us are past the halfway mark..that is a huge achievement! Take care :-)


SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
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Not a Simpson fan (guess that makes me weird) but maybe I should phone to hear it Liza.
Best wishes to both of you while you go through the rest of your treatments. I know it has come up many times but have you considered the manuka honey for the lack of or strange sounding voices?
Love
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #136414 07-07-2011 05:48 AM
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Lizzy can't get the honey!!!! Banned in her province!!!! Bizarre! Too bad too it helped me this las week too - I haven't really been using it much as I have been healing, but last thursday i suddenly swelled up... My lymph specialist thought it was edema, which I thought too - but this Monday I got a rash just around the right side (non operative side) of my neck. It was very mild. Plus my mouth inside was hurting. So I went to my lymph girl Tuesday she massaged me and the swelling went down for the most part, and.yesterday I saw my surgeon, for my regular appointment - he wasn't worried as the rash was already going away (gone today) and the swelling was just in my cheeks!!!
he said if it was in my neck he'd been concerned. And said I was all clear (after a scope, probe, and inspection) and I have first follow up ct in 3 weeks... But I digress... Ultimately I think I was allergic to these high dose iron tablets I have been taking so I stopped and the symptoms have gone away ( there is such things as iron toxicity - and it can cause a rash... Iron also binds with proteins, and guess what lymphedema fluid is comprised of,,,? Protein... Hence my chipmunk look...) anyway. Because I didn't know what was going on, and because my mouth particularly my tongue was feeling sore - it looked i was getting thrush, I started back with the honey 3 times a day, and the coating that was there sloughed off within two days, the pain is gone, and my tongue has healed enough that it looks like an actual tongue even though the left side is still a little swollen!!! (way less swollen than it has been - it looks normal healing swollen... If that makes any sense.) bottom line... I have a love hate relationship with the honey.. I love. It because it really works! But hate the taste!

You I'll get through this!!! Your past that point and getting closer to the end.... Hugs! And strength to you!,


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
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@Gabe..Cheryl is right...Manuka honey is not allowed to be sold in WA due to it's strict quarantine regulations! How honey in a jar can harm our bees or environment is beyond me!! I have bought another honey called Jarrah honey which claims to have the same properties as Manuka..tried some today and it actually lessened the pain. However,I am a bit worried about its impact on teeth as my dentist told me that honey causes cavities.

@Cheryl, any light you can shed on the matter?? Glad to hear that your swelling has subsided. It's crazy how every bit of swelling, pain etc can send us to overdrive...hate this illness!! My cheek is puffed out too...that with my Marge Simpson voice and battered neck is a sight to behold!!

Hugs xxx

Liza



SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
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My husband lost his voice for around a month. We communicated through lots of written notes and e-mails since he doesn't "text".


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #136501 07-09-2011 11:20 AM
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Definitely, losing your voice is not fun for the person who is afflicted. I would try to only ask my son "yes" or "no" questions to which he responded by a thumbs up or thumbs down sign. Also if I had choices to offer him like "do you want chicken broth, beef broth or veggie broth" he would answer by holding up one, two or three fingers. There were times, though when he would get so frustrated with me, he would be trying to mouth words (probably naughty words) and wave his arms excitedly because of something I had not been able to interpret correctly or to his satisfaction that at one point it really struck me so funny! And I had to be so careful not to laugh. To help him be patient with me, I told him I had a hearing loss (I really didn't) and not always able to hear what he was trying to say in a whisper. Somehow, we got through it.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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With regards to manuka causing cavities - one of the scientists conducting one of the studies - said it doesn't because it's acidic... Not sure what that means, but I'd you are using it just remember to brush your teeth regularly and use your trays!!! I wish I knew the full answer... Take care!


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

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