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JamesD #164830 05-12-2013 08:15 PM
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Everyone seems to have covered the important stuff so I'll simply say welcome.. smile


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
JamesD #164850 05-13-2013 08:23 AM
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I see that today is your appointment and I am wondering what you learned. I read through your post and the replies and while I didn't see anyone mention it, I am hopeful that you are taking along someone else to all of your appointments, and that you have pen /paper ready at all times. You sound very together but this is a whole new world that will involve things like masks and lots of fun stuff.

Some people keep print copies of every test result. I never did but we are all different. I don't know if there are any stats on whether that improves longevity or not!

And damn Eric, if this isn't the time for a little comfort food then I don't know when is. Add the pounds - it will not hurt you.

Cancer has a huge emotional toll as well. Someone like you who is young, in great shape and who likely has felt fairly confident about your health may take some time to deal with it, but that time will come. Do not try to be invincible. When people ask if there is anything they can do - have a list ready - ie grass.

Hugs
Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
JamesD #164882 05-14-2013 08:17 AM
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I assume it's BOT or Tonsil? Speaking of eating all you can eat unnecessarily prior to treatment, just to bulk up, I read excess nutrients can also feed and progress cancer. On the other hand, I basically live to eat, and ate most foods on my bucket list before starting treatment knowing I wouldn't taste much in a while, and making up for every meal I missed for the past 3.5 years lol, but 95%, if not more, what I eat is home made, fresh. Good luck.

"High levels of cellular nutrient metabolism result in ROS production and oxidative stress that can contribute to the development and progression of cancer..."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3190402/


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






JamesD #164888 05-14-2013 09:02 AM
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Donna,

When I was diagnosed, I was overweight and had been eating far too much comfort food as a way to cope with the stress of what I did for work prior to cancer. Where I was coaching my sons wrestling team, I was 25lbs over what I really should've been. I kept good muscle content, but my body fat percentage was up there.

I need to be clear on this, very clear and it's supported by the American Journal of Clinical Nutrition. The wrong type of weight will hurt you, even pointed out that it certainly raises the risk of a recurrence. What you eat, and how much of it are important.

I know a lot about fighting, I've been doing it my whole life in one form or another, so when cancer came knocking it caught me unprepared the first time and it kicked my ass. One of the things that make me me, is when I get my ass kicked I learn from it.

Nutrition & attitude are the only two things we can control as a patient, the rest is up to our medical professionals and how our bodies respond to treatment. When you do the research you find what a powerful tool nutrition is, and that the right nutrition plan can help you survive and lower your chances of a recurrence, and that statement is backed up by solid science that's published by the National Institute of Health. Where we didn't look for the fight, it came to us, give it hell and use whatever means you have to win.

I may not be invincible, but if I'm going down, I'll do it swinging as my boys Nate and Charm did before me, and I encourage those that feel like I do to do the same. Excuse the passion, it's just how I am.

Good luck Jim, in your corner if you need brotha.

E

Last edited by EricS; 05-14-2013 10:38 AM. Reason: always spelling

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
JamesD #164899 05-14-2013 09:42 AM
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I think I'm now going to defer my comments to newbies re eating all your favorite foods to Eric from now on.

Eric could you perhaps come up with a "menu" of easy to fix or buy meals, liquid and solid, that you would recommend during and post Tx?


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.
JamesD #164902 05-14-2013 10:17 AM
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You bet David. I'll start writing it today and we'll get it posted. I've been working with a couple of guys with Doctorates in nutrition and Physical Therapy on these thoughts and we've got some great material to help patients in treatment and then recovery after.

As I do not want to hijack Jim's thread I won't answer any nutritional questions here and will save it for my own post. This is Jim's thread for Jim in dealing with his diagnosis and an opportunity for us to show him love and support, so that's what I'm going to do.

Let us know your results from your appointment my friend, looking forward to it.

Last edited by EricS; 05-14-2013 12:27 PM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
JamesD #164939 05-14-2013 04:49 PM
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Please, let get back to the original topic which is our new member JamesD.

Hope your appointment went well yesterday and you have a good solid treatment plan all set up.

There are several things you will need to do to prepare for treatments. Get your blood counts checked including thyroid. Visit the dentist and get any questionable teeth removed now, also get flouride trays made. Get a hearing test done. If you will be getting chemo with rads, make sure to pay very close attention to any changes in your hearing and immediately notify your doc.

Stick with us, we will help get you thru the upcoming weeks ahead. It wont be easy but if you maintain proper nutrition and at least 48 oz of water daily it will make things easier for you.

Best wishes.


Christine
SCC 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 smile
Pandora99 #165034 05-16-2013 01:59 AM
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Donna - appointment went well. Path is charted out beginning June 3rd. Dental visit was completed with with a follow up today. Great point on notebook and someone to assist. My wife has been to every appointment to date for that reason. And yes to no fear of taking support from others. Thank you for your support and the group at large.

Jim

PaulB #165035 05-16-2013 02:02 AM
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PaulB - Bulking up for sure - trying to keep good proteins and calories. It is BOT and thank you for the support and advice.


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.
JamesD #165046 05-16-2013 09:00 AM
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Cisplatin may/will cause nausea and constipation. The docs normally have a nausea plan but ask docs what you should have in the medicine box for constipation. Both big bags of cisplatin gave me horribe and painful constipation. BOT is a pain in the neck, don't let it be a pain in the a## too.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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