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Joined: Apr 2017
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Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2017
Posts: 81
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I had 30 days of radiation for 60 Gy and followed Christine’s advice - I actually gained weight (20 lbs, which I have now lost) and I think that made all the difference in my recovery, due to nutrition.

I ate regular soft foods until the last week of radiation and then switched to homemade protein shakes. I did not use ensure or medical shakes.

I was on high doses of gabapentin to control pain. The bigger challenge to me was everything - including water - tasted awful and salty. I had a dry erase board with a list of water, calorie, and nutrient targets and forced myself to hit the goal daily. By the end of treatment this meant a lot of ice cream for calories.

Up your protein intake (shakes are fine) as the body needs it to repair damage from radiation.

Best of luck!
Stef



Keep fighting friends!

Me -- currently 53 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Joined: Jan 2006
Posts: 756
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
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DMT74,

So sorry to hear you joined the recurrence club. I also had a recurrence a few months before my 5 year mark.Details of my OC journey are in my signature. One thing to verify with your surgical team is to confirm that they are doing “frozen sections” during the surgery - this is a biopsy done during the surgery to help ensure they get clean margins. Most larger hospitals do it, but many of the smaller ones do not. I learned they hard way how important this is.

I did not have a feeding tube during RT nor did my doctors even mention it. My cancer was on the lateral side of my tongue and the radiation was concentrated mainly on the right side (tongue, jaw, neck) sparing most of my throat. After the first few weeks of treatment I was mainly on a soft food and liquid diet (smoothies) - invest in a good blender (Vitamix). I could not chew and could not tolerate hot or spicy food, but once the food got past my mouth, I was able to swallow it. If met many OC patients over the years, and those that had their whole or most of their throat radiated had the most trouble swallowing and needed a feeding tube.

Good luck! If you have any questions, let me know.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Good luck, dtm74!

To help answer two of your questions, I tried to maintain my swallowing, but usually by halfway through my treatment(s), I would need to rely on my peg tube, which I had for several years anyway, so it wasn’t a big thing. Even with that, it was still difficult for me to reach my nutritional goals, and mostly depended on areas radiated, and type of chemo I was having, sine were easy, like smaller radiated areas in my neck, and lighter chemo, while larger radiated areas, and stronger chemo’s and targeted therapy, were more difficult, for me,,with prior treatments.

Everyone can be different! Whatever you think would help you through treatments, use, as long as approved by your doctors. I found hydration to be important, maintaining swallowing as long as possible, and maintaining mouth exercising, even if relying on a peg tube, and rest! At Hope Lodge it was good being around different cancer patients, and activities, that you could tolerate. I think I did more with a group, than when I stayed alone at home!

Good luck!


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






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