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Re: Permanent PEG? [Re: Dizz_zzey] #199334
10-27-2019 03:03 PM
10-27-2019 03:03 PM
Joined: Oct 2019
Posts: 25
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 25
Boston, MA
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.

Re: Permanent PEG? [Re: r0se] #199335
10-27-2019 04:50 PM
10-27-2019 04:50 PM
Joined: Oct 2012
Posts: 1,166
Toronto, Canada
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gmcraft Online
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Joined: Oct 2012
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Toronto, Canada
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.
Re: Permanent PEG? [Re: r0se] #199337
10-28-2019 01:40 AM
10-28-2019 01:40 AM
Joined: Oct 2017
Posts: 24
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Michael Young Offline
Member
Michael Young  Offline
Member
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Joined: Oct 2017
Posts: 24
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
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18
CT - NED 10/18
CT - NED 02/19
CT - NED 06/19
MRI H&N, X-ray chest - NED 10/2019
Re: Permanent PEG? [Re: Michael Young] #199340
10-28-2019 10:01 AM
10-28-2019 10:01 AM
Joined: Jun 2019
Posts: 132
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
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Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 132
My trachie was removed whilst I was in hospital. It all depends on the individual and their needs.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Permanent PEG? [Re: Michael Young] #199341
10-28-2019 11:11 AM
10-28-2019 11:11 AM
Joined: Oct 2019
Posts: 25
Boston, MA
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r0se Offline OP
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Joined: Oct 2019
Posts: 25
Boston, MA
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.

Re: Permanent PEG? [Re: Dizz_zzey] #199412
11-10-2019 03:40 PM
11-10-2019 03:40 PM
Joined: Oct 2019
Posts: 25
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 25
Boston, MA
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.

Re: Permanent PEG? [Re: r0se] #199413
11-10-2019 04:26 PM
11-10-2019 04:26 PM
Joined: Jun 2007
Posts: 10,419
PA
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ChristineB Offline
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ChristineB  Offline
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Joined: Jun 2007
Posts: 10,419
PA
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
Re: Permanent PEG? [Re: ChristineB] #199415
11-11-2019 06:00 AM
11-11-2019 06:00 AM
Joined: Oct 2012
Posts: 1,166
Toronto, Canada
G
gmcraft Online
Assistant Admin
gmcraft  Online
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,166
Toronto, Canada
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.
Re: Permanent PEG? [Re: ChristineB] #199420
11-13-2019 10:03 AM
11-13-2019 10:03 AM
Joined: Oct 2019
Posts: 25
Boston, MA
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r0se Offline OP
Contributing Member (25+ posts)
r0se  Offline OP
Contributing Member (25+ posts)
R

Joined: Oct 2019
Posts: 25
Boston, MA
Hi Christine,

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

Warm Regards,
Hanna Madsen

Re: Permanent PEG? [Re: gmcraft] #199421
11-13-2019 10:04 AM
11-13-2019 10:04 AM
Joined: Oct 2019
Posts: 25
Boston, MA
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r0se Offline OP
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r0se  Offline OP
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Joined: Oct 2019
Posts: 25
Boston, MA
Excellent! Thank you. I will look up the posts

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