Previous Thread
Next Thread
Print Thread
#198831 08-04-2019 07:12 AM
Joined: Jul 2019
Posts: 5
Jules88 Offline OP
Member
OP Offline
Member

Joined: Jul 2019
Posts: 5
As I sit here waiting for TORS and neck surgery, I have been doing a lot about liquid calories and shakes because of swallowing issues.

Question- I am lactose intolerant so what would be best to use? I can use use almond milk but what else? Anyone else have this issue? And if so did you use a soy or plant protein powder?

I can mash veggies and stuff but I am thinking of bad day options. Trying to prep for worse and hope for better!

Jules88 #198833 08-04-2019 02:18 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1

Jules 88,

I haven’t had this type of surgery, so o don’t have much to offer, but it’s good that you’re planning ahead with what if days.

I have trouble chewing and swallowing, and have no teeth! I was in the nursing home as of this morning, but fell this morning! I ate the puréed diet and was fantastic! I ate like I member ate before and put on two pounds of the 10 I lost, i have to find out how they prelate it.

At home myself, I used all kinds of liquids to purée depending what I was cooking. I’ve used water, chicken or beef broth, coconut milk, regular milk, and Soy milk, and maybe others I can’t while on pain meds for surgery tomorrow for my hip. Not exactly cancer related, but it does have an effect from lifestyle to medications!

Good luck with your surgery!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198834 08-04-2019 03:25 PM
Joined: Jul 2019
Posts: 5
Jules88 Offline OP
Member
OP Offline
Member

Joined: Jul 2019
Posts: 5
Paul,

Any info is helpful! You just never know how things will work or what you may need. I think I have the need to control what I can as it feels like so much is now outta my control.

Hope your surgery goes well!

Jules88 #198835 08-04-2019 06:46 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I think the same thing! Except when o know O have sound advice, and stayed with those doctors! Once I had four consults, and settled with one team who stood by me until i was cancer free!

Good luck with everythong!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198837 08-05-2019 04:54 AM
Joined: Aug 2018
Posts: 345
Likes: 8
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
I used to be on faculty in an orthodontic department at a dental school. in the olden days, when patients had their jaws restructured, we wired their mouths shut for 6 weeks. i cannot imagine! They learned creative ways to get food in. one gal would put a cheeseburger in a blender and turn it into a shake! i suppose after awhile, even a cheeseburger shake might sound good.

Hopefully, you can find some options that you will enjoy


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198838 08-05-2019 05:42 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Do you have access to a dietitian at your hospital? They can give you suggestions and even recipes. Don’t wait till the last minute. If there is one available, contact him/her now and pick their brains.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Jules88 #198914 08-23-2019 02:15 AM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
Offline
"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Hemp milk is really thin but full of nutrients, if that helps.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Jules88 #199283 10-19-2019 08:18 AM
Joined: Jul 2016
Posts: 34
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2016
Posts: 34
At lunch time I do a high protein chocolate Mass Weight Gainer that I get form the Vitamin Shoppe (191.9 OZ bag) I mix 2 !/4 or !/3 cups in a 16 OZ mixer with chocolate Almond milk. It tastes great and to me it's about simplicity. My swallowing is getting better after some practice and exercises following my tongue reconstruction though I don't think that it will ever be like it was before surgery.


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, End 11/17/17
8/23/19 Tongue reconstruction, left radical neck dissection

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5