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Joined: May 2012
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AnaD Offline OP
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Joined: May 2012
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Hi folks, I thought I'd pass on something very useful we've been using the past two weeks. First, let me say, hubby was already tired of the millions of questions coming his way, including me asking "how much have you eating", "how are you on water", "how's your weight"....etc. I set him up an account with mynetdiary.com where he tracks all of this, plus, bought him a scale that automatically talks to the program, one less set for him. He also tracks his notes on how he feels daily there (i.e. sore throat, #2, rash on face, etc.) When we go see the oncologists, all we have to do is hit print, very easy! There are many such programs out there, but we chose this one because it interfaces with the scale and BP cuff electronically, and anything I can do to streamline is a good thing


wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
Joined: Feb 2011
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Joined: Feb 2011
Posts: 117
Ana, great idea. my hubby used to write everything down and keep a spreadsheet. every doc visit he would have it all with him so it was easy to answer the questions and make the most out of the doctor's time at each visit.


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
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That's awesome!


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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Ana thank you for sharing that! Tracking nutrition is "key" to patients and survivors alike. Us head and neck survivors have a tendency to avoid food as we often suffer the loss of the social aspect of eating. Poor nutrition and lack of exercise weakens the immune system and studies show that patients with higher lean muscle mass percentages have better survival rates.

Personally I've made it a point to track everything I eat (easier on an all liquid diet) so that I even have my macro nutrient (fat, proteins, carbs) broken down in percentage per calorie. That's sounds fanatical when I put it like that...hmmm I am obsessed.

Anyway, thanks for sharing this, it's important! Seeing you are from Illinois I have to say I'm excited to be at the N. Illinois Oral Cancer Awareness Walk this Sunday as the featured speaker. My dad's family is from Illinois so it'll be good to see family.

If you are in the Chicago area you should check it out here: http://donate.oralcancer.org/index.cfm?fuseaction=donorDrive.eventDetails&eventID=511

Eric


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: Nov 2012
Posts: 58
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2012
Posts: 58
Thank you for sharing this. I know that I drive my husband crazy with all of the questions too. This sounds like it could be very helpful.


Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13



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