| | 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 | James,
PLEASE do yourself a huge favor and get at least 2500 cals and 48 ozs of water down EACH and EVERY DAY from now until at least 1 yr post Tx. Of course it won't be easy but trust me it will be worse on you if you don't. I speak with VAST experience on this topic. You might, no I'll change that to you need to discuss with your RO about giving you weekly fluid IV's. I also would recommend getting a port. That's the one thing I wish I had done, well other than being a compliant patient. lol
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Nourishment and hydration are vital during and after treatment. From the time I joined the forums I read that advice. It was drilled into my head.
Hydrate hydrate hydrate!... eat what you can while you can.... calories calories calories! Believe me, I knew full well as did my caregiver what I needed to do.
In reality, I was unable to maintain that pace due to side effects. I made it through treatment but not without losing too much weight and getting a PEG literally 2 hours after ringing the bell.
Now, 7 weeks out of treatment I'm doing quite well. I'm eating solid foods again but still getting 80% of my nourishment through the PEG. Weight has been stable.
David's advice on fluids is spot on. I got IV fluids practically every day from week 3 on. Hydrate and eat as much as you can while you can and don't beat yourself up if you can't maintain it. Ask for help from your team if you find yourself falling behind the eight ball.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Remember this is a WAR you are in and like every Warrior you must be physically and mentally strong, you need at least 2200 cals. per day, 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 !!!
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | Doctor confirmed radiation burns on back of throat. Right now using Motrin - she prescribed magic mouthwash also minocycline for rash from Erbitux (known side effect) Other than those 2 issues still eating 3000 calories and drinking close to 100 oz of water. No weight loss yet. Have to be more careful in what I eat as throat will not get better. Again I appreciate the advice/encouragement and will follow it throughout the battle.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | 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 | As the swallowing discomfort increases you will need to concentrate on high calorie liquid drinks like Boost VHC that packs a whopping 560 nutritionally balanced calories in a small 8 oz can. You can reach your daily goal by only downing 6 cans and believe you will appreciate that when you can barely swallow. My routine in the late stages of Tx was alternating 1 can of water and 1 can of CIB VHC (now Boost VHC) every waking hour. I didn't always keep that schedule but it was my mental goal.
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: 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 | Glad to hear you are getting closer to the right amount of water and nutrition James as evidenced by your lack of weight loss. Your body is thanking you now for the water. Don't hesitate adding some more with the heat coming on. Glad you have identified the solution to a couple of problems.
You are fortunate, too, since OSU has a good aftercare program when you complete treatment. Hope you get there as fast as possible!
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: Jun 2013 Posts: 1 Member | | Member
Joined: Jun 2013 Posts: 1 | Just registered as of today,I am Jason.. Jim's oldest son..Have to say I am proud of my Dad for sticking this out and showing his real strength though this battle.. he has always been a strong person and I know that this will even more strengthen his character.. He will make it through this and knowing him will stay on this site for support for others after he beats this.. Thanks to all who have posted helpful thoughts to help him get through this. | | | | | 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 Jason. I believe you could be part of the success your father has been having! Always good to see family here!
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: 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 | Jason, glad to have you with us.
My son joined the forum when I was very ill a few years ago. He kept everyone updated when I was not able to.
You will find we are all in this together. We are like a big extended family around here. Your father is in good hands, we will help get him thru this bad spell. He is a lucky man to have a great son like you!
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome, Jason.
Always nice to have supporters looking out for the good of those struck by this horrible disease. You will find great knowledge and support at the forum and others will benefit from your unique insights you bring. Again, welcome, don
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 | | |
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