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#195042 - 08/24/17 12:45 PM eating during rads?  
Joined: Aug 2017
Posts: 22
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 22
Ontario
G'Day All,

Here's my questions: is it possible to consume nourishment orally during RT treatment? Can this preclude the necessity of a feeding tube ( if Chemo isn't part of the treatment plan )? Are swallowing exercises necessary if you are consuming Vitamixed foods and tolerable liquids on a daily basis?

Thank you!

Regards,
Dan


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
#195043 - 08/24/17 01:50 PM Re: eating during rads? [Re: sooner]  
Joined: Oct 2012
Posts: 871
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 871
Toronto, Canada
Hi Dan,

You may not have a choice with PMH when it comes to the tube. John was told he had to have it and that was it. Do you know how much radiation you will be getting -- how many grays? John had 70 grays over 35 days and that was the lifetime maximum for that area of the body. By the middle of week 3, he could no longer swallow because it was so painful, not even a sip of water.

If you are able to swallow consistently, then the swallowing exercise may not be necessary. The exercises help mitigate the effects of the swallowing muscles becoming atrophied.


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.
#195046 - 08/24/17 03:34 PM Re: eating during rads? [Re: sooner]  
Joined: Aug 2017
Posts: 22
DeepSeaDan Offline
"OCF Canuck"
DeepSeaDan  Offline
"OCF Canuck"
Member

Joined: Aug 2017
Posts: 22
Ontario
Hey GMC,

The RO said the tube was mandatory if Chemo was used, and optional if it isn't. They want to get it in before the chemo affects the bloodstream, and fighting infection gets harder. Not sure how many "grays" I'm getting, as the Tx. schedule is as yet not determined.

What is a "Gray?" A unit of radiation dose perhaps?


Stage 3 HPV-16 Tonsilar Tumour with extension to 1 lymph node
Currently prepping for Treatment, which is starting Sept. 5th
#195047 - 08/24/17 03:51 PM Re: eating during rads? [Re: sooner]  
Joined: Oct 2012
Posts: 871
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 871
Toronto, Canada
A gray is a unit of radiation.


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.
#195048 - 08/24/17 07:31 PM Re: eating during rads? [Re: DeepSeaDan]  
Joined: Jun 2007
Posts: 9,745
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,745
PA
Dan, Ive sent you a private message (PM). Click on the tiny flashing envelope next to your "My Stuff" to get your messages. When you have time please follow the direction included in the link to add your signature.

Thank you smile


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
#195064 - 08/28/17 07:18 PM Re: eating during rads? [Re: DeepSeaDan]  
Joined: Jul 2009
Posts: 1,374
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,374
Los Angeles
Dan - welcome to our family. You're one of us now.

I had something like 31 trips on the ride, as I called the radiation setup, after a neck dissection and chose not to get the tube. My RO had told me that the treatment would be tough but that I could do it if I applied myself. It helped that I hadn't needed chemo.

All of that said, if I had it to do over again I would have gone with the PEG. After a few weeks, even with swishing viscous lidocaine around my mouth for ten minutes prior, taking the several glasses of liquid nutrition by mouth at each feeding was incredibly painful. Of course each of us is different, each radiation plan is different, and you may have an experience that's much less taxing. My advice would be to discuss the pros and cons thoroughly with members of your medical team. The oncology nurses are amazing - the one I had was of enormous help with these maintenance issues. Couldn't have done it without her.

Perhaps others here will weigh in with their experiences. I turned down the PEG because I knew it was another surgery, and my neck dissection had a major complication that nearly killed me and was possibly related to the anesthetic. So you can understand I was reluctant to go under again so quickly. But again, your experience will be different.

Best of luck. You will definitely get through this, and we're all here to help you.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 8 years all clear in 6/17

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