| Joined: Aug 2017 Posts: 31 Likes: 2 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Aug 2017 Posts: 31 Likes: 2 | 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 2017
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | 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. | | | | Joined: Aug 2017 Posts: 31 Likes: 2 "OCF Canuck" Contributing Member (25+ posts) | OP "OCF Canuck" Contributing Member (25+ posts) Joined: Aug 2017 Posts: 31 Likes: 2 | 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 2017
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | 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. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | 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 ChristineSCC 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 | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | 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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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