| | 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 was going to post that60 is low but I see you caught it. Mine was up when I had surgery and it's been down since. Above 120 is considered high.
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 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 |
Rita:
You can do this,dont give up. I know its diffiuclt, but it can be done. Hang in there.
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 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | thanks all. yes i can and will get thru this ... just hearing news i was not expecting hit me hard is all. i was kind of on auto pilot sailing thru all of this but that one jammed the auto pilot controls and made me rethink ... they just called to set up consult. said i will see oncologist dr, dentist, and radiologist next monday at the UW... so we shall see what all they have to say when monday comes ... until then i am dismissing them from my mind as much as possible because i need to focus on eating or finding some way to get some calories ,.,. i am losing too much i am down about 13 lbs and can't find anything to get in me to stop the losing ... i dont feel hungry once i start to eat but feel hungry before i take a bite ... and most things are too hard to eat .... any suggestions on high calorie things to eat that are soft and easy to get down? i really only eat a bit of pudding here and there ... and lots of water. jello seems worthless but i do eat it some... but i want something more substantial so i am not run down for treatments.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | 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 | Carnation Instant Breakfast VHC.
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: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Rita.....It sounds like you are going to have to do as David has said.....choose a high-calorie nutrition drink and make yourself get it down, like it or not. You obviously are not going to be able to take in enough calories right now to stay healthy.
I, myself, preferred the high-calorie Boost.....Later, I changed to the high-protein, after I had stopped losing weight.
You are right that you need to keep your strength up....so keep nibbling, but use the drinks to get your nutrition. Remember,,,,your building blocks need fuel to do their jobs, even if that fuel doesn't come from your favorite sources!
XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Thanks! ok shall try those - my daughter went and bought a bunch of high protein calorie drinks today while she was out to do her errands .. (smile) so we will see how those are too. also got about 600 calories worth of cream of wheat down ... so we will get this going yet ... don't want or need to lose weight so time for those calories
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | VHC is sometimes hard to find, dunno why, but look in the diet section of supermarkets to find drinks like Boost and Ensure. Safeway carries a less expensive store brand (no name to it) that is actually made by Ensure. Wally carries a house brand also.
Point is that you can get down a LOT of calories without filling yourself up volume-wise.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 | I make milkshakes which I estimate to be about 1000 calories. Its pretty good and you can alter it to make it more nutritious.
3 to 4 cups chocolate ice cream
1 cup peanut butter (smooth)
1 to 1 1/2 cup milk
3 tablespoons sugar
1/4 cup chocolate syrup
Blend it up and enjoy. All the ingredients are approximate, add more milk to thin it down if you need to. Or you can add boost, ensure or one of those nutrition drinks to make it healthier.
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I believe that DavidCPA had his pharmacist order the VHC as it is not normally carried on the shelves.
David should chime in here soon.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | 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 | VHC is currently ONLY available thru the pharmacy sections of stores like Walgreen's, CVS, etc and ordering directly on line. One does not need a prescription to order it. I would call Walgreen's one day and they would have it delivered to the store usually the very next day. I paid $30 per case of 24 cans and it only comes in yummy Vanilla. During Tx and for weeks after I drank the can room temp and I tried downing 6 cans a day which gave me 3360 calories. After the throws of Tx were over and lasting over a year post Tx I mixed a chilled can with an equal amount of whole milk and drank a can with each meal just to make sure I was getting proper nutrition and added calories. Even with this I didn't start to add pounds until I was 16 months post TX.
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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