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Cheryld Offline OP
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Wow... got my mask made last monday and am starting friday afternoon... it's good, but not so good. eek. I might as well enjoy my food for the next four day.


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
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Eat and enjoy as much and as long as you can even if you avoid sleep. Taste issues comes fairly quick after the rad starts, like within the first 2 weeks.


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.
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Cheryl,
I am so glad you are starting. It made me feel like I was finally doing something, even though it is not so pleasant. Do you know what your rad treatment plan is? I assume IMRT, and they are concentrating on certain areas.

Yes, enjoy your food, although you might enjoy it for at least the first couple of weeks of TX anyway. My rad technicians were the nicest bunch of people, which was good because it is so scary. Hope you have the same situation.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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Cheryld Offline OP
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Well after talking to my nurse practitioner yesterday - I am a little more confident - she organizes everything for my rads and chemo team. I agree totally - not looking forward to it - but it certainly beats this do nothing limbo! Even if I can eat my way through it... Which I have been doing!

I have no idea how my body will respond to the treatment - normally it's pretty good with surgery and stuff but this is a dog of a different color entirely. Thankfully I can afford to lose about 30 lbs before hitting my normal body weight soooo I have some insulation.

Yes my rads is IMRT 33 with 2-3 doses of cisplatin - I may get one off for good behavior I've been told - I start my chemo on Monday - I have to spend the night - they want me hooked up to and IV for 24 hours.

As I've said before - not looking forward to it... But glad it's happening. Ergh... Sort of.

Thanks fir your input guys - you are the best... And Anne glad you are through it... Hopefully things will improve daily!

Last edited by Cheryld; 03-15-2011 05:44 AM.

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
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Dont think of this as a diet. Thats a huge misconception! Losing 30 pounds in a short amount of time could mean big problems for you. It can mean malnutrition and possibly dehydration too. Together these things add up to mean while you are going thru treatments you will feel like crap. Even if you are over weight, the doctors do not want you to lose anything.

This is coming from a patient who lost 65 pounds with having a feeding tube. I was hospitalized several times for dehydration and malnutrition. I felt so bad I thought I was dying.

Hope you pay attention to this and dont let it happen to you. I used to warn another member here too and they didnt take it seriously enough. Well, they ended up spending a few weeks in the hospital.

You must get a minimum of 2500 calories and 48 oz water every single day. More is even better. Your body will burn thru calories at a record pace while going thru treatments and recovery. Many days after treatments ended I would take in over 5000 calories per day drinking high calorie shakes and doing the tube feedings. I never gained an ounce. Ive still kept the 65 pounds off and I began the cancer batter almost 4 years ago.

Right now and for as long as you possibly can eat as much as you are able to. Drink lots of water. Especially with having chemo, it flushes out the poison from your body. You may think that you dont do very well with eating right now, it will unfortunately become even harder to do. Keep your protein intake high to help with your healing. Just keep eating and drinking to keep those swallowing muscles active. You do not want to lose that ability. Also stretch open your mouth as wide as possible and hold it for a few seconds, repeat this a few times per day. This will prevent trismus which is another big problem you do not want to have.

Make sure you discuss all of this with your doctor before doing any of it.


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
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Cheryld Offline OP
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Believe me I am not treating this like a diet.. I like foooood. I've been trying to gain so I have a little cushion in case I do lose. I was about 20lbs overweight when I went into the hospital, I had to have lost about 5-10 in there... I have been working on gaining it back. I haven't stepped on a scale lately but I am likely back to at least my starting weight likely more.

thanks for the advice though... I am going to try and keep eating as long as I can.

take care


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
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It is typical for treatment to start within a week of the mask fabrication. They made mine on a Friday, I had simulation the next Monday and treatmenr started on Tuesday.

Enjoy all the food you can, while you can.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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@Cheryld: Hope everything went well for you. You are in my prayers. smile


joucads

DX: T1N0 Tongue Cancer 23/3/2011
Partial Glossectomy 30/3/2011
Clear margins.
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Cheryld Offline OP
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Thanks - I'm 3 weeks in 1/3 of the way through my treatments. One chemo down_ one next week. At m half way point. I have a few mouth sores and so,e stiffness... And use my thoart feels constricted and sore... But I am good. For the most part still eating though food actually sucks right now. But i force myself. How are you doing?


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
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Cheryl, Please try the Manuka honey on your mouth sores. The OCF will not endorse it but when I start to get a sore (and I've only had two small ones)I put a tsp of honey in my mouth and swished it around for 2 mins. They healed right up. Now I've been putting small dollops of it on tinfoil and putting it in the freezer over night so its like a lozenge. You can use your mouth to hold it right where the sore is. It's really been working for me. Whole Foods has it. Also there is an article about at Sloan in NYC.


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
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