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zengalib #178440 03-18-2014 06:00 PM
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ZengaLib, I'm so sorry you're facing this after all you've been through. I hope it's a relief to have a date and a plan. You have so much to look forward to -- your new grandbaby, bell choir, friends and many good books -- You will get through this to enjoy all that and more. Come here and vent when the going gets rough, keep taking care of yourself, and you will be through this before you know it.

(((HUGS)))

Lynn


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
zengalib #178472 03-19-2014 07:34 AM
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I was glad to read that you feel the surgery is "doable." It speaks to your fighting spirit. Way to go!


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.
zengalib #178484 03-19-2014 08:54 AM
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Okay I'm hoping and praying for a partial on all accounts. As for the trache hopefully it will be temporary. April 9 is okay... but if you are up for it ask them to put you on a waiting list in case they have a cancellation sooner, and get your preops done early to accommodate this possibility. Hugs and blessings 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
zengalib #178495 03-19-2014 01:35 PM
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I don't have to do pre-ops because I just did them before I had the exploratory surgery. I just need to have some bloodwork done, and that will be done next week. I also have to meet with one of my doctor's partners next week. I don't really think that it can be moved up, since it is an all day surgery with multiple docs. Right now I am looking at rehab facilities for after surgery.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178496 03-19-2014 01:36 PM
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Thanks for everybody's good vibes and good thoughts.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #178525 03-20-2014 08:31 AM
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Hugs and feel better... hopefully they do what they do quickly get it all with minimal impact - and spring you. ;o) hugs my dear.


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
zengalib #184863 09-05-2014 04:59 PM
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Update: I had the 11 hour surgery on April 9, was in the hospital for a week, then was transferred to a skilled nursing facility for rehab. I had a detour and had to return to the hospital for 5 days for a MRSA infection. I was in the rehab center until July 11, and have been home since then. I have a feeding tube and a trach. I see a visiting nurse now once a week and an SLP twice a week. I don't think that I will be ever able to eat normally, but I still have my vocal chords (or "vocal folds" as my SLP says), and I am able to say some short phrases and some words. I have a portable suction machine and a machine with moist air. I also have a hospital bed, so I can keep my head raised. The next step will be trying to use a Passy-Muir valve to help with my speech. I am trying to speak as much as I can, without having to write everything down. I really like my speech guy. It has been really hard (and still is) but I am hanging in there, even though I get tired.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
zengalib #184869 09-05-2014 06:58 PM
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Thanks for posting your update. Its great to see your sense of determination at your recovery. Sounds like you have a long road ahead. I too used a possey muir valve trach. For me, it worked very well. I was lucky and only had my trach for 2 months.

There are some programs that my friend uses on her ipad where she types and it will talk for her. Im not sure what its called but it helps her communicate as she has no voice at all after having her voice box removed.

Keep up the good work and best wishes with your continued recovery.


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
zengalib #184876 09-05-2014 09:46 PM
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iSpeech is a old one used a lot but IOS 5 and higher has it built in. Go to Settings, General, Accessibility, Speak Selection, On.va bit cheesier, but doable.

I'm glad to hear the update, too. You've done really well and I hope that continues. smile


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
zengalib #184880 09-06-2014 01:21 AM
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Posts: 1,024
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Kris uses Speakit in his IPad, when he needs too.
Pleased to hear you are doing okay.


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!
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