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#96505 06-02-2009 09:39 AM
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wfc Offline OP
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Did a lot of you lose your voice? Mine is very weak and I have 18 more Rx treatments to go. If you did lose it, how long before it came back? If I can't talk, I can't work! Very frustated!

WFC


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #96508 06-02-2009 09:47 AM
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Bill
My voice has gotten weak at times, but has always recovered. I've not lost my voice during chemo or radiaton.
Sandy


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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SandySt. #96511 06-02-2009 10:14 AM
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Mine is very horse and I am worried about losing it. I NEED to speak in order to continue to work and I am determined to work as long as I can. I feel that working is the only control I have over this monster, and I need to continue on.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #96527 06-02-2009 11:56 AM
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Absolutely did lose my voice at various times ( didn't last long though ). Was able to work and communicate like I am doing right now - on the keyboard. Treatments pay no attention to your NEEDS - whether it is eating, drinking, tasting or talking.


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".
William1949 #96547 06-02-2009 02:48 PM
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I lost my voice right after my rad Tx's ended and I used a pad to write down my requests and a bell to call my wife when she was out of sight. I think it was only gone for less than a week for me. Other than the bell I think my wife enjoyed this phase of the Tx.


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.
davidcpa #96565 06-02-2009 06:26 PM
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I lost mine for a few weeks but then it came back slowly.


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
billy.calcutt #96571 06-02-2009 07:23 PM
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Dan lost his for several weeks. And, like everyone else his came back slowly. What kind of work do you do, wfc?


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
mhupe #96603 06-03-2009 04:36 AM
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I didn't lose mine, but it was very weak and hoarse. This lasted a few weeks and then came back. I think trying to talk made it worse but some of us like me, just can't be quiet. 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
mhupe #96605 06-03-2009 04:49 AM
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I am a Labor Mediator. I attend negotiation sessions and try to bring the parties to a settlement without any labor unrest. I speak during every meeting so I am very worried that my days of work are slowly coming to an end for a while.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #96610 06-03-2009 05:42 AM
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wfc,

If you're like most of us you will be to weak and unable to concentrate in a few weeks to do anything like what you are used to.


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.
davidcpa #96627 06-03-2009 11:12 AM
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My plan is to stop work on 6/16/2009. I just want to make that date. It is a control issue for me over this damn cancer! Then, I am ready to give in/up for a few weeks of full recovery. Does that sound realistic, or am I still living partly in the state of denial?
I hope I can make!

Last edited by wfc; 06-03-2009 11:36 AM.

Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #96628 06-03-2009 11:43 AM
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Bill: Just some thoughts
How long do you plan taking off. Would it work for you to just take a week or long weekend when you need it to give your voice a rest? Most people say the condition it doesn't last long.

You're still not finished radiation, 4 more to go. Don't you want to wait until after you're finished which I understand it's the darkest before the dawn.

Just wondering?
Sandyst


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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wfc #96630 06-03-2009 12:35 PM
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wfc

Yes I lost my voice for about two weeks right near the 6th week of Radiation after having sailed through the first five. As to your newest question: HOPE is fine and fixed dates are a good goal. It "sounds" realistic but you may need longer to recover if your reality is like the posts in the Medications, Procedures, Treatments forum under the thread: Working Thru Radiation. Go for it, it's less than two weeks away.
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #96633 06-03-2009 01:10 PM
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wfc,

You will know when it's time, believe me this is not like the flu. This Tx is barbaric and cruel and unusual but most of the time it is effective and without it we die.


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.
SandySt. #96637 06-03-2009 01:45 PM
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SandySt.

I plan to go off on 6/16/2009 and stay out through the entire month of July. I hope that will be enough time to get back moving again. I know from what I've read here that I won't be normal in that short period. Just hoping I can be functional again by the end of July.

Bill C.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
davidcpa #96641 06-03-2009 04:07 PM
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I lost my voice for about 3 weeks towards the end of radiation. My kids loved it smile I used a dry erase board.

Best of luck with your treatments and plans for working, hope it works out.


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
ChristineB #96650 06-03-2009 07:05 PM
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I lost my voice for 3 solid weeks. A few people around me accused me of faking..that I did not want to talk or something...lol...lol.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Ray1971 #96684 06-04-2009 06:45 AM
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Along with loosing my voice came what I'll call lockjaw as it seems like my jaw muscles had tightened so much it was difficult to open my mouth. That lasted longer than loosing my voice and yawning helped a lot because I could control how far I opened my mouth but it "fired" those muscles which helped me recover sooner I think.


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.
davidcpa #97007 06-08-2009 06:45 PM
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I lost my voice about the last two weeks of rad. It came back in about 1 week - weak at first but recovered completely. Survived with note pad, bicycle horn for family and emails to clients.


DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10
Carmen M #97009 06-08-2009 06:55 PM
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A bicycle horn...that is a good one! Dan lost his voice for a couple of weeks too. The bike horn is a great idea.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
mhupe #97028 06-08-2009 10:52 PM
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My voice became weak during radiation, my trismus was so severe that I could barely open my mouth anyway so I whispered for the better part of 3 months. Right as I got a bit of my voice back I had the surgery and they wired my jaw shut for 2 months, due to the damage my speech has been severly afflicted as well to where I'm just now being understood by most people.

I ran hotels before this experience and due to the damage done by the cancer, I can't effectively communicate verbally enough to perform my old duties. It's great to have a plan but this disease does not respect schedules, vacations etc...it kills and destroys life and dreams. I would worry less about your schedule and more about living and doing whatever possible to beat this thing.

That sounded harsh and I didn't mean it to but really I'd care more about living then being able to work.

Best of luck

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.
EricS #97033 06-09-2009 04:43 AM
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Eric,

I agree, but, without work who pays for the treatments, meds, doctor bills and whatever else comes with this monster. What about the normal day to day espenses of living, nothing stops because I have cancer. I am taking care of myself according to my doctors and the way I feel. My choices are to continue to carry on a somewhat normal life during treatment for as long as I can or sit on my butt and cry about poor me. If I would have chosen the 2nd option, the Cancer is in total control. I know that in a week or so, that will be the case, but until then and even then I will continue to fight this thing with ever bit of strength I have. I am sorry to hear about your story. I will pray for you and best of luck to you also Eric.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #97037 06-09-2009 05:57 AM
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wfc,

With that attitude you will not let this crap steal more of your life than it will left unchallenged.


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.
davidcpa #97042 06-09-2009 08:04 AM
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David,

I am a fighter. In my life I have taken very many journeys, some planned by me, some not. The journey with this monster cancer was not my plan, but I had to come up with a plan to travel it. I planned to try to stay as normal as possible, knowing that I will never be the same person I was before I was told "You have cancer". The rest of my plan involves my faith, family, friends, work and good medical care. I can only hope this plan works for me. If not, I will construct another until I succeed.
Today, I just finshied my 26th rad treatment. I am still working and plan to until the end of next week. If I physically am able. After that I will be off of work for three to five weeks. All part of my plan. I know cancer may have a very different plan for me, but I am in charge of my life.
Thanks for all the support on this site. It gives me strength to go on when I am thinking about giving up. Although, sometimes I think it is a bit too REAL, it was/is sure nice knowing what may lay in wait in this horrible journey that we all must take.

Last edited by wfc; 06-09-2009 09:17 AM.

Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #97046 06-09-2009 10:24 AM
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Hi Bill,
My mom never lost her voice during RT tx's, it became weak and it was painful for her to speak when she felt dry. can you wear a microphone, something small near your collar so that you don't have to strain so much? my daughters teacher in grade school has one she used during class so that she didnt' have to strain. if you would like for me to call her and ask what the device was exactly i can do that for you. at back to scholl night she used one, we couldn't see it but we could tell her voice was a bit amplified-nothing so obvious.
where are you in PA? where do you receive treatments?


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Donnarose #97062 06-09-2009 03:40 PM
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Donnarose,

Thanks for that offer. If you could find out what it is called I will check it out. I may need it if my voice doesn't come back as fast as I would like it to.
I live in Pottstown and am getting all my treatment at Pottstowm Cancer Center which is an affilate of Fox Chase Cancer Center in Philadelphia.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #97063 06-09-2009 03:45 PM
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Pottstown, wow is that close!!!!

I work in Allentown, I live north in Lehighton. There are several members from the Lehigh Valley area on this site.


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
ChristineB #97067 06-09-2009 04:23 PM
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Where did you do your treatments


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #97071 06-09-2009 04:50 PM
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I went to Lehigh Valley Hospital Center. The big one on Cedar Crest Blvd.


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
ChristineB #97082 06-10-2009 04:41 AM
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I used to work on Tilghman Ave. That is a VERY large hospital.


Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
wfc #97093 06-10-2009 08:55 AM
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Hi Bill.
Hope this helps! it is a sound field system that they use, if this isn't what you need i would think they can offer assistance. I'm at work currently and have only a second so I wasn't able to reasearch it.
www.lightspeed-tek.com
800 732-8999
Let me know how you make out!

Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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