| | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | As the title says, 18 months post. I owe SOOO many people so much...I would love to share a story of a very positive outcome with whoever will listen!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: May 2013 Posts: 10 Member | | Member
Joined: May 2013 Posts: 10 | Go! There's never enough good news!
42yr male, Dx jan2013 SCC left tongue stage 3, half glossectomy w/thigh tissue flap and left neck dissection jan/feb, 35 IMRT and 3 cisplatin apr/may, PEG in late March/out early June, pneumonia twice since tx began. No tobacco, HPV-. Now have painful Lymphedema in face/neck...keeping my chins up!
| | | | | 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 | Fabulous news Chris. Simply wonderful.
Yep. Tell us your survival story.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Welcome and glad you survived the storms last night. I am a bit east of you in Murphy/Plano. Please do share your story. Never enough good stories to cheer us all up!
Ed
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
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 |
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Welcome to OCF! Congrats on being 18 months post tx. Best wishes with your continuing recovery.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=ChrisN]I wrote this right after www.iwishihadbetternews.blogspot.com [/quote] I enjoyed it Chris. I would add yes you are incredible to have gone through what you did. Nothing easy about it. I take it you probably went to Baylor for care? We have to hit the food trucks first in Fort Worth and then Klyde Warren Deck Park in Dallas! Thanks for sharing. Are you getting therapy for your neck. Regular massage will help a lot. Glad you are here to talk about it. Ed
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
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Chris,
The shock you mentioned in your blog could easily be something called Lhermitte's sign. It is common with platinum based chemo protocols. I still have it almost 10 years later but only when looking down while walking down stairs. You might want to get a home blood pressure device and monitor that sitting and standing. If it isn't blood pressure that made you faint you also might want to have a Doppler on your carotids. They tend to get damaged by radiation and it can be very bad if there is any restriction. Similarly your LDL cholesterol should stay below 100 for life. Any cholesterol plaque buildup in the carotid that is compromised by radiation can result in a stroke.
Ed
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
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | I received treatment at las colinas cancer center. Amazing folks!
The nerve thing was definitely L'Hermittes. Still have it every now and then but nowhere near as bad as before. As to the cholesterol thing...I used to be on Lipitor before cancer. Constant muscle soreness that I attributed to working out like a madman. Quit Lipitor. No more muscle soreness. Still lift like a madman.
Right before I got sick I was running around 30 miles a week and eating very close to a perfect diet. I got cancer anyway. So, I still run. I still watch my diet. But every now and then I have a beer. Sometimes I have cheese enchiladas. If I learned anything it's that everyone passes. Even vegans. They just wish they'd had a steak beforehand.
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | 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 |
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | The day I got some teeth pulled, port and peg placed I had planned on the Hotter Than Hell Hundred. I spent 5 months training. Something said get back at it. Since I saw religious statements throughout your blog I can tell you it was a God thing. They told me if I wasn't in such great shape they wouldn't be as aggressive with treatment. I think maybe they gave me a bit too much radiation but they did kill the cancer. They said they would either cure me or kill me. I'm thinking I ended up with a twofer.  We had a member years ago that met another member for lunch on a business trip and they were doing what they called "the butt dance" as the jolts were traveling down the spine and leg. It was hilarious to hear her talk about it.
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
| | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Hi Chris, I'm only a few months behind you and so many bits of your story really resonate with me. In particular your reference to beer and taste. I used to have a very sweet tooth but that has definitely changed. I really enjoy bitter tastes now. I now love a nice hoppy beer and can taste elelments that I could never have apprechiated before. Quite a different experience to drinking beer before. I also now eat dark chocolate(+70%) which is an essential part of my weight maintenance (as well as cals it also has lots of protein plus other goodies). But I can't tolerate ordinary confectionary chocolate which has a stinging quality to it. As you say in your blog the person we are coming out the end of this ordeal is quite a different one to the one that went in! Great to hear about the survivors in your SPOHNC group too. Thanks for sharing. Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Chris,
You can help by adding your Signature Line so that each post you make will have a point of reference.
Welcome to this fantastic site.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | Sally, you nailed it!! I've had such a hard time figuring out my post-treatment fascination with beer and you're right, the bitterness is pleasant. If you promise moderation I have a few recommendations: Young's Double Chocolate Stout, Left Hand Milk Stout and of course, Guiness. The bitterness we enjoy with hints of chocolate. They are heavy enough that I have one and I'm done. Enjoy!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Thanks for posting your story/blog Chris. I found several similarities while reading, especially the 2 weeks after treatment part as I just passed the three week mark and I'm still struggling. I know the light is there, I've just not seen it yet!
Best wishes on your continued recovery and NED status.
Positive thoughts and prayers
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | T, I swear its right around the corner!!! You've got this!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
| | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | Chris, perhaps we should start a beer apprechiation thread. Any other hoppy beer lovers want to join in?! It is great to find someone with the same taste change experience. Young's Double Chocolate Stout is a fav of mine too. I'll have to see if I can find the others you mention. I'm not so keen on Guiness, however, I'm not sure I have tried it since my change in taste sensation! In Scotland and wider UK we are going through an explosion of new microbreweries with beers heavily influenced by American craft beers using American and NZ 'grapefuit' flavoured hops. I know you Texas folk apprechiate our Scottish beers - there is a website you can Google 'ScottishBrewering' which gives info on all these fantastic beers and get this, the author lives in Texas! Have a look at the A-Z list. My recommendations if you can get them are Joker IPA from Williams Brothers and anything from BrewDog, but there are many, many more.
I agree I can only manage a couple of pints in a row, my attitude to drinking beer now is to drink slowly and enjoy. The change is so profound that I do wonder if I now taste beer with a much greater intensity that my partner and friends who are also great beer lovers! So I now have this whole new hobby in life of exploring new beers and real chocolates. Oh and I have recently noticed that I am begining to enjoy cheeses again too, also with a more focused intensity! It makes up a lot for the foods and tastes I now miss out on so I am not complaining. Realising this was the point when I came to terms with my swallowing challenges. Last summer we had a holiday to Belgium - heaven for beer and chocolate. Sally
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,294 Likes: 1 | All this hoppy talks makes me want to grab a pint now. Humm.... Friday afternoon starts in an hour, close enough. LOL
Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
| | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 134 | It's five o'clock somewhere!
Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
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