#43243 04-30-2004 07:12 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Eric,
You're not alone hating that canned crap! Ensure & Boost made me gag! I ended up giving a few cases of it away to a convalecent hospital (poor old folks). I lived on Carnation Instant Breakfast and milkshakes. Carnation has an espresso flavored Instant Breakfst, unfortunately you have to buy the variety pack to get it but it's pretty good.
I didn't do the PEG thing. Food tasted like anything from cardboard to sh*t. It was the worst part of the whole deal - not enjoying food for at least 1/2 a year. It passes.
I lost over 60 lbs and my wife freaked out too but it's ok now.
You have a great attitude and that will carry you a long way!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#43244 05-01-2004 04:05 AM | Joined: Dec 2003 Posts: 47 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Dec 2003 Posts: 47 | About 2 weeks into rad/chemo, Don had lost about 15 pounds. I started making him a large malt every night and he only lost 5 more over the next 6 weeks.Then he maintained his weight until surgery and has lost 10 since then (cant have a malt) He's on ProtainXL through the PEG)The shake was YUMMY even to me. I gained weight just MAKING it! It was "by guess and by golly":
3 LARGE scoops good ice CREAM "not icemilk - check the ingredients"
1 can EnsurePlus
1/4 cup half & half
a good splash whole milk
Heaping TBS Carnation malted powder
2 strong sqeezes of Hershey's syrup
Blend in the Oster and pour in a large soda glass. There would be about 2-3 "fingers" left for the cook. That's how you gain weight MAKING it.
Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
| | |
#43245 05-01-2004 08:05 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gary,
I gave away a bunch of Carnation Instant Breakfast just because I only liked the espresso version. I started putting a couple of shots in the other stuff and it wasn't too bad. I also gave away 6 cases of Jevity Plus because at the time I thought I would never be able to get past the gag reflex. I ended up buying a lot of Boost Plus later because the taste become tolerable and then I actually started liking it. In Texas, or so the home healthcare agency told me, you can only donate it to organizations that give it to other countries. They conveniently had one they work with.
Jeepster, I may have to try one of the shakes it sounds so good. I may add some espresso for the coffee flavor I crave so much.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
#43246 05-01-2004 08:08 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Eric,
Have you heard of the cookbook, 'Easy-to-Swallow Easy-to-Chew COOKBOOK"? I heard about it from a post earlier and since I had a birthday April 7, I took advantage and requested it. There was an email address on the post and they mail it to you with payment back after you receive it. My wife ordered it from Borders. It may not help as much now as it will later but it gets into some of the mechanics of swallowing and has some great recipes.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
#43247 05-01-2004 10:12 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Ed,
Me too especially that strawberry (?) Carnation stuff). I tried adding some canned Starbucks espresso to vanilla Instant Breakfast and that kind of worked. Try a few scoops of Hagen Daz coffee flavor ice cream in it - that works even better.
If I have to drink Ensure or Boost when I get old -I will kill myself first - Manufacturers - I hope you're reading this!!!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#43248 05-01-2004 10:35 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Gary don't do this to me I'm waiting to hear what the next treatment for me will be.. don't scare the S### out of me before I'm started... when I've had previous laser surgery I had to live on canned macaroni cheese.. it was the only thing that would slide down and not burn to much.. and the idea of another 3 weeks is YUK... and you are saying there could be worse to come.. thanks pal.
take care don't work to hard for the nest week.
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | |
#43249 05-01-2004 01:09 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | To look back, there wasn't food that tasted like cardboard or metal or very unpleasant to me during or after treatment. The taste of some food has definitely changed (even water was different)but I never hated any food that I could eat at that time. Sometimes I held my nose and closed my eyes if I had to eat or swallow things that I didn't like. I had the same kind of food for over 3 months (2 times a day): minced fish in congee. Very boring especially when seeing the variety of food others ate. I just told myself that every bit of food I took could save my life. Up to now, I don't have a strong feeling against any food that tastes strange. Compared with other side effects, I always tell others that the loss of taste is the easiest I can cope with. See how people react differently.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
| | |
#43250 05-01-2004 01:11 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Canned macaroni and cheese? Sounds like you guys in the U.K. managed to one-up us on spam! | | |
#43251 05-01-2004 01:35 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | The book uptown is talking about is located on this website under the products for patients section
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | |
#43252 05-01-2004 06:58 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | It's not the taste of food that I struggle with, it's the "feel" of some things that I eat. Such as a baked potato........I used to LOVE these and while they taste good, the texture in my mouth takes away my enjoyment in eating one. I have always chalked this up to a lack of saliva. I still have a pretty good amount of saliva, but it's thick and ropey. I was eating just fine after my surgery, it's the radiation that put a damper on my appetite.
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.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
