| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So glad to hear such an encouraging update! Keep up your fighting spirit! I have the IOS 5 on my iPhone and and it does very well with the speech function. It even has a selection for speaking rate that you can slow down (or speed up) to make words easier to understand, in addition to all the different language voices.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I have a couple of apps on my ipad for speaking, but it is just as easy to write it down. Sometimes the volume on the iPad isn't has loud as I would like. I am trying to use my voice as much as I can.
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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | One more thing...they got all of my cancer with my surgery, but one of my surgeons kind of wanted me to do 30 bouts of radiation, too...just in case. I decided not to do this. I already had 38 rads in 2009, plus 3 cisplatin. The surgeon admitted that the rads would slow down the healing from surgery, so I decided against it. I am going to have a baseline PET scan in November, so we will see what that shows.
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, zengalib
I am very glad to hear from you! You have certainly had a tough six months, but are carrying on with your usual grace and courage. It's wonderful that the speech therapy is coming along, and that you like your therapist. The internet and all the new technologies are fine things in there own ways - but to speak with one's own voice is a blessing.
Very best wishes - and keep posting.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | So glad you are doing well. (Or better - I'm surprised you didn't go with the rads though I hear you on the healing,  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
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | Zengalib-I am glad to hear that you are doing well. I also hope you are enjoying your grandchildren! Babies=happiness.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I decided not to have the radiation, because I already had the rads 5 years ago. They really kicked my butt. This most recent surgery has made my original partial glossectomy and selective neck dissection look like a walk in the park. I didn't feel I could handle the radiation at this time, too. I did the whole bit in 2009 and the cancer still came back. I made the decision I did because I felt it was best for me. I am pushing 70, and have had a good life, so I am comfortable with this decision. I am enjoying my beautiful grandchildren, and was glad to be able to live to see them born.
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: 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 was not offered any radiation after his surgery. I did ask. We were told that radiation had not worked for Kris, so why have more.
Knowing what I now know about increased effects of more radiation I'm kinda glad .
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Makes total sense Zen. I hear you on the rads. And it would definitely be a long haul and probably have a big impact on quality of life. fingers crossed it's gone for goood!
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
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Hope all finds you well. Your decision sounds best for you, lets hope the Beast is gone and you have a very long life!!!Keep up the good fight. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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