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Joined: Jun 2014
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Posts: 14
I'm just a week out from concluding my TX but I'm starting to feel more and more confident about (orally) eating and drinking rather than having to rely on my G-tube which I did for weeks and weeks. (Pain and gag reflex so bad during TX I could NOT swallow w/o issues.)

The pain seems to be subsiding very rapidly to the point where I would call my throat merely uncomfortable. I have succeeded in guzzling water and convinced myself that my gag reflex is no longer standing in my way. I have also guzzled some milkshakes and other 'experimentations'. Seems I have a range of temperatures I can manage (not too cold; but have let things sit out and then they're fine) but also 'flavors'.

I'm still in the bad mucositis phase. Strawberries seem to be acidic enough to warrant being avoided.

Was wondering if someone had a ready list of good blended fruit/veg drinks or smoothies or shakes which will be easily palatable by this condition. What fruits/juices/flavors to avoid and what are acceptable.

Also if anyone has a good recommendation for a very soluble tasteless/neutral whey or protein powder?

Thanks,

Paul


Dx at age 47 (in 2014-06), non-smoker.

2014-06 biopsy confirms SCC in BoT w/ HPV16+, Stage T4aN2M0
main tumor plus 2 nearby lymph nodes; bilateral; no metastasis?

2014-07-01 single molar (#3) extracted

2014-07-21 IMRT (35x) and Cisplatin (3x) have begun

2014-09-05 IMRT and Cisplatin finished! (only had 2x Cisplatin - weeks 1 and 4)

2014-09 to 2014-12 Recovery. I think I can...

2014-12 follow-up PET/CT scan is negative. All clear!

2016-05 all subsequent PET/CTs negative.
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Congrats of finishing yoru treatments! Radiation is still continuing to work for a few weeks so dont be surprised if you still feel kinda crappy for a while. After about week 3 you should slowly begin to feel a little better each day. Most fruits are too acidic to eat at this early recovery stage. Bland foods with a smoother texture will probably work best for at least the next few weeks. You main issue needs to be caloric intake with trying to eat as healthy as you can. Not easy but check out the shake recipe and food list below.


The thick gunky mucous last only about a month before it overnight turns into the dry mouth phase. You can always go see the ENT or oncologist to get suctioned out. Ask your doc for a prescription for a portable suction machine so it can be done at home.

Rinsing with seltzer water, using a waterpik on its lowest setting and continuing to rinse with baking soda, salt and 16 oz of warm water all will help as well. Some members have found relief with gargling with seltzer water.

Intake still must be your main focus. Every single day you need a minimum of 2500 calories and 48-64 oz of water. This needs to continue until at the minimum you hit the one year post rads mark. Nutrition is what will heal you and get you back on his feet. If you can push to take in more, even 3500 calories its not too much for this phase. The more you takes in the better you will feel. I used generic high protein whey powder I bought at Rite Aid or Walmart.

Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.

Easy to Eat Food List

(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.



Hang in there! Very soon you will be coming out of the tunnel.


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
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Experimenting is the key Paul. Keep looking for ways to get those calories in. What you can eat will change and it can be frustrating, but its critical to your recovery to get those nutrients in.

And be patient. There will be setbacks and the progress seems very slow at times.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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Paula when you say "guzzle" is that like holding up a drink and continually drinking? It took me 9 years to get to that point if so!

Congratulations on finishing treatment. A major milestone, indeed!


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
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Terra's Whey is a great chocolate protein powder! Im 3 months out and just finally getting a real appetite back (and huge improvement in taste) and love this recipe:

1 cup Milk
1/2 cup Greek yogurt
1 banana
blueberries to taste
1-2 TBSPs peanut butter
1-2 scoops protein powder
bit of powdered flaxseed maybe 1 TBSP
1 tsp olive oil

Really good!


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!

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