Previous Thread
Next Thread
Print Thread
#194540 05-28-2017 02:45 PM
Joined: Jul 2016
Posts: 34
Murphy Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jul 2016
Posts: 34
Hello fellow members, I know it has been a while since I have shared. After being diagnosed with stage 2 throat cancer I think I told all of you that my ENT advised not doing surgery on my throat as it would be a very big life changing experience. Epiglottis removal, voice box removal, stoma and permanent feeding tube, I am pretty happy with the decision to not due this surgery and do radiation instead. 35 radiation treatments later, temporary feeding tube, 30 pounds lighter, treatments were over about 4 weeks ago. I am starting to ween myself off the morphine and hydrocodon and am trying to gain some weight back though very difficult. These radiation treatments were brutal. My nutritionist said to use 6 bottles of Isosource a day to help gain the weight back but I can't do it. It smells foul so I am eating as much as possible and 2 Isosource things a day. I have gained maybe 2 pounds. I went back to the radiologist last Monday for a follow up scope, though he said that my throat was still quite swollen and iritated but that he didn't see any signs of cancer there. He said that he can only see the surface and a soft tissue scan is scheduled for August 8 and another scope afterwards. WOW, some good news for a change. I went to church this morning for the first time in 4 months and wept quietly the whole service. I can't push it, my tolerance for patience and resting is nil but with my wife helping me I will make it!
Cheers to you all,
Murphy


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
Murphy #194541 05-28-2017 06:24 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Congrats on doing so well, Murphy! Recovery takes a very long time. None of us can ever bounce back as quickly as we think we should. Gaining 2 pounds is a step in the right direction.

The following list should help you to find things you can still eat easily like canned peaches (these will slide right down) or cream soups (helps with sensitive mouth sores). I also enjoyed yoo-hoo and chocolate milk during rads and recovery plus the extra calories sure didnt hurt.


List of Easy to Eat Foods



Here is a recipe for something I used to make and drink when I went thru treatments. This shake has anywhere from 1500-2200 calories depending on how its made. The list of easy to eat foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate. If you are ever eating and feel like the spices in your food have set your mouth on fire, milk will instantly neutralize the burning in your mouth. I also found room temperature foods were easier for me to eat or slightly cool. Anything hot bothered my mouth and hurt like heck.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.

Hope these tips help. Best wishes with your continued recovery


Christine
SCC 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 smile
Murphy #194542 05-29-2017 05:53 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
Hi Murphy,

Nice to hear from you. At our hospital, we were told to make fortified milk for milkshakes/smoothies that you are making. Here's the recipe

Protein Fortified Milk Recipe
Ingredients:

1 quart whole milk or 2% milk
1 cup powdered non-fat dry milk
Blend milk and powdered milk together. Chill in refrigerator for 4-6 hours before consuming.​ Each one-cup serving of protein fortified milk contains 211 calories and 14 grams of protein.

In addition, you can put ice cream in your Isosource to improve the taste. It will also up the calorie count. That's what I used to do for my husband. Poached eggs are good too, they go down really easily. I kept a detailed calorie count for all the meals as it helped me to keep track of how much John was consuming.

A shout-out to your wife. I know how tough it is to be a caregiver and I applaud her efforts.


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.
Murphy #194543 05-29-2017 07:15 AM
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
Murphy, congratulations on completing your treatments! As said, gaining two pounds, and getting out, is a step in the right direction. Like you, I couldn't do 6 cans of Ensure or Glucerna or at least want too.

Other than what was already said, I found egg drop soup to be nutritious and tolerable, and basically lived on that, along with the supplemental drinks, scrambled eggs, cooked with lots of butter on low heat or other means to avoid any browning, and pastina cooked with chicken broth, lots of butter, and grated cheese, if it's tolerable. Slowly, I added or tasted different foods, sometimes as little as a teaspoon to help get my taste back on track, and it did, but it's not overnight. Even to this day, when I order out, it's not one dish, but may be as many as 5 or even 7 to see what I can eat and taste. Some even go to a buffet, which may be a cheaper way, but I'm selective with that.

Treating and preventing mucoctis and thrush helps too, as do avoiding spicy, acidic, too temperature hot, and sharp textured foods.

To increase appetite, caffeine helps, so does fat and sugar type foods, took marinol for a while also, which increases appetite. There are others as well.


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






Murphy #194547 05-31-2017 09:12 AM
Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 111
Murphy!

Great to hear from you. Glad to see that you completed the treatments and are in the process of recovery

Have you tried the unflavored Isosource? (Quick piece of advice - Don't try to smell anything before ingesting but it sounds like you figured that out for yourself.) Head and neck cancers and their treatments really do a number on smell and taste sensations

You could also try any over the counter weight gainer / muscle milk type of liquid. Something high in protein....

Good Luck



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue


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