| | 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) | | OP 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) | | OP 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: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 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, 57 - 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 All the details, join at http://beatdown.cognacom.com | | | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | | OP 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
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
