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Dizz_zzey #199334 10-27-2019 04:03 PM
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Thank you, all! I decided not to get the waterpik because it's a little expensive. I also love to travel, and I want to find strategies that will allow me to do so. A waterpik would be bulky on the road. I maybe optimistic, as I am
not sure how much traveling someone with a PEG and a bad voice can do, but it's the goal I am working toward.

I was able to try Mucinex. It appears to be working.

r0se #199335 10-27-2019 05:50 PM
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I bought our Waterpik at Costco. For $50.- (Canadian), we got a countertop model and a travel model. My husband had a PEG tube for more than two years. What I found most difficult was whenever we went out of town, we had to bring boxes of Ensure with us because he was using a special high-calorie prescribed Ensure. It was a drawback, no doubt about it. But if you can swallow, you probably will be able to travel and not have to bring a Waterpik along.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
r0se #199337 10-28-2019 02:40 AM
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i am surprised that your trach got taken out before radiation

I had to keep the trachie until radiation finished


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
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My trachie was removed whilst I was in hospital. It all depends on the individual and their needs.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
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The doctors were reluctant, but I made it my mission to prove that I didn't need it. I bought something to monitor my oxygen and put a cap on my trach. I then kept the trach cap unless I was sleeping and kept records of my oxygen level. The hard data convinced them. However, I was only able to do this because I had a visiting nurse who was also monitoring my oxygen level and I had family or friends who were with me most of the time.

Dizz_zzey #199412 11-10-2019 04:40 PM
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Hi all,

Has anyone here had a total tongue removal? I'd love to get the experience of someone who has. I am really concerned about what my future quality of life will be like. I currently have lymphedema under my chin, a PEG which I rely on completely to feed myself, and I almost always have salvia in my mouth. This is 6 weeks after the surgery. I also started radiation a week ago. It would be helpful to know what will recover and what will not. I get that much of this is on me - I am working on swallowing and speaking every day, with limited success. Thank you for your time.

r0se #199413 11-10-2019 05:26 PM
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Hi Rose!

Im sorry Im not the exact person you are hoping to hear from. I wanted to let you know we do have many members who have had total glossectomies. Quite a few have found posts from Miss Kate to be very helpful and encouraging. Shes a big success story of overcoming tremendous obstacles most people can never imagine facing. Heres a link to her posts...

Misskates profile

Misskates posts







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 #199415 11-11-2019 07:00 AM
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tamvonk is another member whose husband has had a total glossectomy and he appears to be managing very well. I do encourage you to look up her posts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
ChristineB #199420 11-13-2019 11:03 AM
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Hi Christine,

Thank you so, so much. I am reading her posts
now and am finding them super useful.

Warm Regards,
Hanna Madsen

gmcraft #199421 11-13-2019 11:04 AM
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Excellent! Thank you. I will look up the posts

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