| Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | my husband will be going home with a trach and will likely not have the ability to speak in the future, he has voicebox but no tongue. What software has been most helpful in using for speaking vs just writing all the time?
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I have a friend who uses an ipad with a text to talk program. She types and the ipad will say what she writes. It works very well. ChristineSCC 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 | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Christine, do you happen to know what app she uses for the iPad. I have checked out a couple of them, and they do work well, but you have to be online to use them. I would like to find one that can be used offline, if I'm not near wi fi.
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.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I will have her reply with more info. ChristineSCC 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 | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 |
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.
| | | | Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Hello! I am the friend of whom Christine spoke. I have been using my iPad to speak now for over a year. It is called Voice Reader and the company is Linguatec. It was a whole $1.99 and for 99 cents more you don't need an Internet connection. There are many voices available and if you ever go to a foreign country, you can change the language, type it in English and it will translate for you. Hope it helps you! Cindy
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris uses Speakit. It works very well . No internet connection needed. Just download the app. You can have it on your tablet or phone which is handy. Missyp if your husband still has his voice box he will indeed be able to make speech. Try it yourself. Keep your tongue still and try to talk,your speech is still very intelligible.. While he has the trach tube in place using a tablet with Speakit will work well for him. Once he loses the Trach he will be able to talk, people just need to really listen. Kris has had both a total Glossectomy and a total laryngectomy. He has a TEP, a tracheosophageal puncture, with a plastic implant to enable speech. Cindy, do you not have a TEP?
Hope this helps, Tammy
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!
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Thanks, guys. Cindy, I had already installed Voice Reader, but hadn't realized that you could use it offline. So, I went ahead and paid the extra .99. I am home now where I have wi fi, but I am anxious to try it out.
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.
| | | | Joined: Oct 2012 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | thank you for the suggestions. I will get those appls loaded on his phone. do you know if it works with android devices.. he has an iphone but a kindle HD.
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey - I do agree with tammy - no tongue doesn't necessarily mean no speech. Hopefully with therapy at some point he will regain his speech. As for a kindle. Not sure what aps are available. Maybe even go for a cheap galaxy tablet? hugs
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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