| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Everyone seems to have covered the important stuff so I'll simply say welcome..
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | 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)
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | 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.
| | | | 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 | 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.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | 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.
| | | | 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 | 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. 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: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | 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 | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | 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. | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | 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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