| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Lonliness maybe?? He needs something to occupy his time and mind beside thoughts of what happened.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2009 Posts: 71 | I have been living off of my PEG for >2 years and hear are a few things I have learned: Cancer feeds on calories/sugars, chemo can damage your hearing (a pre treatment test is a good idea), this site is golden for help and advice. Good luck to you and your brother - our hearts are with you both. I have just started using a living fuel supplement to replace jevity 1.5/isosource 1.5 and it seems good so far. livingfuel.com
Last edited by airkitty; 03-10-2010 01:03 PM.
11/1999 SCC tongue - surgery 1/2000 Met(s) in lymph nodes - modRND 2/2000-4/2000 RT ~6 weeks end of 2006 SCC tongue - surgery 1/2008 SCC BOT - surgery / PEG installed 2/2008 chemo & RT 4/2008 last time I consumed solid food by mouth
| | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | Another good site is Lucys realfood. Great recipes for peg tubes and liquid feedings. I have been making my own peg food since October 2009 with healthy food, healthy calories, proteins and fats and very little sugar content. The recipes were approved by the nutritionist and, as a matter of fact, she was very impressed. I'm gaining my weight back slower than I'd like but I'm told to expect that.
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Feb 2010 Posts: 55 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2010 Posts: 55 | Thanks for the link. I am reading the how to's and have a comment. Instead of rewarming the food in a microwave, it is often easier to bring it to room temperature by placing the container in hot water. The food container should be around two cups and the hot water should be in a container at least 4X bigger. This prevents microwave hot spots.
I will have about 5 days between the surgery and my brother being released from the hospital to go shopping and pre-make some food. I won't know if he is going to have a peg until after the surgery.
Brother Dx oral cancer March 23. Invasive Squamous Cell Carcinoma: Mod Dif Anterior Floor of Mouth, Peridental Soft Tissue, Right Bony Margin. Lymph Nodes 0/56 Stage II,pT2,pN0 2.8 cm I was Dx b/cancer 9/2007. IDC Stage2 Grade2 2.4 cm 0/8 Nodes ER+ PR+ Her-2 Rad 33 no chemo.
| | | | 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 | When reheating frozen food it should be reheated to a minimum of 140 degrees. You should also never thaw frozen food in still water or on a counter top. Freezing does not kill bacteria, it only goes dormant so it should be either cooked in a frozen state, thawed in a refrig, microwaved or placed under (preferably cold) running water.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Best is thawing in the fridge then cooking as David said.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2010 Posts: 4 "OCF Canuck" Member | "OCF Canuck" Member Joined: Mar 2010 Posts: 4 | I'm also 6' and pre-cancer weighed over 200 lbs. Ten years after treatment I weigh 155 and can't get beyond that. Encourage your brother to consume as much as he can prior to treatment. Loss of taste and saliva can cause a lack of interest in nourishment. Then the stomach shrinks and causes a further lack of appetite. On the positive side, I feel better now, ten years on than I did when packing 215. My grandkids Wii, says that 6'/155#s is normal. So bro is not that far away. Most important is that you don't nag or put pressure on him. If his weight becomes problematic, his medical team should be able to deal with it. I avoid Boost and Ensure in favor of store brands. Walmart, Safeway and nearly all of the drugstores have house brands that taste better and are way cheaper.
Life is what occurs while we are making other plans!
| | | | Joined: Feb 2010 Posts: 55 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Feb 2010 Posts: 55 | He is taking Boost as a temporary measure. He has gained about 4 pounds which is a lot when someone has been as thin as he is. I am not a fan of Ensure or Boost or any of that type of stuff, but right now it is going to be good enough.
After his surgery when I have him in my clutches, I will make sure he eats/drinks quality.
Brother Dx oral cancer March 23. Invasive Squamous Cell Carcinoma: Mod Dif Anterior Floor of Mouth, Peridental Soft Tissue, Right Bony Margin. Lymph Nodes 0/56 Stage II,pT2,pN0 2.8 cm I was Dx b/cancer 9/2007. IDC Stage2 Grade2 2.4 cm 0/8 Nodes ER+ PR+ Her-2 Rad 33 no chemo.
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