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Thanks for all of you for your support and thank you Lois - it's good to here that they can be such a-holes and still make it through!!


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Posts: 8,311
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DO NOT LISTEN TO HIM WHEN HE TELLS YOU HE IS FINE AND HE'LL DO "IT" LATER.

Later never comes. He is only telling you that to get you off his back but this is the time you need to be the bitch and MAKE HIM drink fluids and food and this is time that he needs you the most and this is the time that something like VHC comes in handy because he doesn't have to swallow as much to get the necessary amount down his throat. I also doubt they will want to do the Peg or Port now but that's only my guess. There is another alternative to the Peg and that is the nasal tube that only takes a few minutes to insert and doesn't require surgery. It's really meant for temporary circumstances but would definitely help him over the upcoming weeks. I know because I had one for 2 weeks after my Tx was over and it made all the difference in the world for me.


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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Biafine is an excellent cream both to heal and prevent radiation burn but while it is a deep wound healing cream, is not supposed to be used on open wounds.

If he really wants to tough this out with no PEG as a few of us did, it is now time FOR HIM to get the protein drinks out of the refrig and start drinking them or make high calorie, high protein milk shakes. While the soup is a nice supplement, it is not a meal and does not contain the amount fo protein his body needs now. Now that he is finally 'down for the count', he may become less recalcitrant. It WILL get much worse before it gets better and better doesn't start until several weeks after treatment ends. I used the nasal tube for two weeks after the surgery in 2001. They aren't pretty, but do work well.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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OK, here are some shake recipes from an old post. Maybe he can mix himself up some of these.

All sent. In case anyone else wants them:

One (750 calories):
1 cup milk or soy milk
1/2 cup ice cream or sherbert
1 scoop protein powder (Spiru-tein or other, but note Ed's comment on Spirtu-tein))
1 Benecalorie (this is 330 calories alone, but note Karen's comments on weight)
2 TBSP Canola Oil (240 calories alone)

Two (500 cal):
Ensure Plus
1/2 cup ice cream

Three (obtained from some site somewhere, 1300 calories):
2 cups ice cream
1 cup whole milk
1/2 cup 1/2 and 1/2
1 pkg instant breakfast
1 tablespoons malted Milk
2 tablespoons Ovaltine

I've already experimented with the first one. IE, mixing Ensure, Support, Boost, skim milk, etc. She just gave me that as a base, so it's obviously flexible.





----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Feb 2008
Posts: 341
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Joined: Feb 2008
Posts: 341
Thanks for the encouragement and recipes!!


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Apr 2007
Posts: 794
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FYI--
Not sure if i have shared this before-
my mom drinks the Ensure Plus, it has over 100 calories more than the regular ensure.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Joined: Feb 2008
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Ok - Dan had he day off from radiation and had another throat scope. Everything still as expected in there - no new "scary" things found. He has decided he wants a PEG and it will be done on Tuesday. He is trying to drink Boost and Ensure (Plus), but they are so think they hurt his throat and choke him if he doesn't chase them with water.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 2,152
Try thinning them out with some milk. That's more protein and calories.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Sep 2007
Posts: 79
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Posts: 79
Milk seems to be a really good idea. Joe drank LOTS of whole milk.


* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
Joined: Feb 2008
Posts: 33
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I am so happy for Dan. Plugged in and watching tv or doing his business calls. Your life is going to get much easier. Let me know if you have any questions. Make sure the give you gravity bags.

Everyday is different
Cindy Ray

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