| | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | I saw my ENT yesterday to have my first laryngoscopy done (scope camera up the nose tubey thing)to take a look at my vocal cords.
I am pleased to report that he saw no evidence of tumor and my vocal cords, while still swollen, look healthy and relatively normal. He said the edges are straight again whereas before the left side was all wavy and the full contact surface did not meet the right side when phonating. So this means my voice should continue to get stronger as the swelling goes down and I may yet be able to sing again someday soon. That would mean so much to me. You have no idea.
But good news so far.
I have developed what I think is lymphedema. ENT saw the swelling and palpated, didn't seem concerned at all. But my experience matches the "turkey neck" experience I have read that many OC patients talk about online and it also decreases in size throughout the day from it's biggest point when I get up. So that would make sense if fluids are moving out from gravity, and it also started just a few days ago. I have read that it tends to start 6-8 weeks after treatment is over and that is right where I am. So I'm not really that concerned about it.
Anyway thought you would like to hear the news!! Anyone reading this should be encouraged. The determination to fight, and for me and most importantly, leaning on God, can carry you through anything.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | 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 | That is sooooooooooo awesome! Congrats - and yes lymphedema is quite natural, massage my friend! )
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: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi HX!
Congratulations on the wonderful news! I hope your voice comes back in full force and you are again singing as you did pre-OC.
You did an amazing job getting through it. There's no doubt in my mind that your strong faith played an important part.
Continue to recover. Enjoy life!
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2011 Posts: 131 | Thanks ladies. I know this is just the beginning of a long and scary road toward remission but I will take it!! Just being able to look at my future with the understanding that I probably still have one has been great. I have also been feeling better than ever. I actually had enough energy to clean my kitchen yesterday and I feel pretty good today too so I think I'm gonna continue cleaning. I am in the holiday spirit like never before. I think it may be time for some lights and decorations!! So what if that makes me one of THOSE people that puts up lights 3 weeks BEFORE Thanksgiving, I ain't got no cancer so bite me neighbors!! lmao
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | | 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 |  have fun!
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 |
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | That's fantastic news. I wished you lived closer - you could expend some of that kitchen-cleaning energy at our place !!! I'm thrilled for you.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | 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 | Congrats Hank!!! Wishing you many many more good check ups for years to come
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: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | very very cool hank!
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Nov 2011 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2011 Posts: 33 | So many people dwell on the fear of a possible recurrence that has become interwoven into our lives. Its easy to forget those tremendous highs that we also get to experience. We survivors really do experience life in its fullness. I'm so happy for you Hank.
2006 SCC T0 N1 M0; 2006 EBRT x 33, chemo x 3; 2010 Extraction 2 molars; 2010 HBOx30; 2011 Dx osteosarcoma of mandible; 12/20/11 mandibulectomy with temp. titanium plate; 1/31/2012 chemo x 4; 9/19/2012 Reconstruction of mandible with graft from hip and bone morphogenic protein
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