| | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) |  Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | David, I agree that he needs a lot of these every day. He is also eating everything my mom puts in front of him. What makes it so difficult to get so many in him a day is that they leave home at 9 in the morning and drive for just over an hour for his treatment. It's about 1 before they get back home. (On chemo days - Tuesday - they aren't home until 5 or later) Between the radiation and chemo is energy is zapped. He eats then goes to bed and it's a struggle to get him out of bed at 6:30. In order for him to eat/drink he has to put his obturator in and once he finishes eating he needs to remove it and wash it off. He's doing everything we are asking of him and even taking some initiative to do it on his own. He hasn't given up, he's still fighting. As far as the water is concerned, he has a bottle with him at all times as his salivary function is basically nil at this point. Because of the radiation his mouth is shrinking and therefore the obturator isn't fitting as snugly as it should. Food/drink go under it and back out his nose. But he keeps plugging along. This man is truly amazing, and I don't just say that because he's my dad. He's never asked how long he has or what is going to happen if they can't kill the cancer he has now, he just focuses on today and what he needs to do. He doesn't question why he has to do certain things, he just does them. He makes being the caretaker easy. Weekends are easier because they don't have anywhere to go. I'm sure mom will be pushing 4 today and tomorrow  Thanks for the suggestions! Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | 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 |
Joy:
Your dad is such a trooper!!!
Keep up the good work, I will say a prayer for you and your parents.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | David , I bought some of the carnation as you suggested. Thanks to you I now have something that is very tasty to me. i just tried the 1st one and had to post this to you.. Us old guys can learn from you kids. LOL
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: 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 | Joy,
Believe me I know it's tough on him as I had to dive 40 mile one way each weekday myself and I didn't dare try to drink on the road. My rad appts were early like 8:30 am and many times as soon as I arrived I went straight to the BR and threw up. That was if I was lucky to make it without a roadside stop. Somehow, in spite of all of my shortcomings I survived the Tx which scared me a whole lot more than the cancer.
My point is he just needs to continue to get as much food and water into his body as he can. It will be soooo much easier on him and therefore everyone around him.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
I should get some commission from Carnation for as much as I mention their VHC (alas, I don't) but it really saved me since I could cut down the number of times I had to "force feed" myself from 6 to 4 times a day. That's a tremendous difference in time and energy when you don't have either. It really helped my recovery and I continue to this day drinking it.
Nestle are you listening ?? I can see my picture and story on your cans. We can talk.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ 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 | I can see it now.. As David says, carnation will make a much better person out of you and give you unending energy.. as he crawls across the floor. LOL You should get some type of kick back. Hell, email them.
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: 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 called and e mailed them several times over a year ago or so and wanted to talk to a person that would listen to my pitch about doing something sponsorship wise with the OCF since I mentioned it, at that time, every day to someone on this site. I never could anyone to call or e me back.
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 | I bet they just sit and smile every time you post about their product and might have laid off a few sales people. I for one am hooked on it.
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: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey David,
Let Nestle know they just got a new customer because of you........I ordered a case of the VHC (VCH)? that you talked about. Sounds great to get that many calories in the same amount of fluid I'm using now. The food I use has 350 calories per can. So, thanks for the advice!
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | 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 | Minnie,
Now I have been extolling VHC's virtues for the last 16 months and my preaching just now sunk in !! You must be my wife's sister. LOL
I hope you like it. At your stage you can maybe add milk to it and even chocolate syrup. That's what I do now when I drink it and it really improves it but of course it adds double the volume which wouldn't have appealed to me a while back.
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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