| Joined: May 2013 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2013 Posts: 42 | Ok we are 2 weeks out of tx. Had to have fdg tube because of 50lb loss. Had scope done at our 2wk check this past week. They said he had a lot of radiation damage and inflammation still- obviously to be expected.- he is able to take thin liquids by mouth but has not been able to take anything else. They had told him to try things like mashed potatoes, things a little thicker... But he has not. I'm so worried if he doesn't start taking things by mouth,that he is allowing the normal formation of scarring/ stricture to occur.seems like I am seeing a lot of this early in people's lives and want to help him avoid it.. Thoughts?
Colleen Wife/advocate for husband. 52 yo nonsmoker ISSC tonsil stage IVa. HPV + Enlarged node & tonsil, CT 2/13 Bx lt tonsil 3/8, PET 3/16 Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk Tx end 5/29 GT 5/24-7/17 Officially in Recovery Phase! : ) CT scan 8/13-NED ! CT scan 7/14-NED 5/2018- 5 year anniversary -NED
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | After what your husband has been thru this is completely normal. At this point, the radiation is still working just like he is going for treatments.
It will take weeks before he starts to progress. Recovery is a very slow process and cant be rushed. For most patients, its a frustrating time full of ups and downs and it cant happen fast enough.
A barium swallow study is something to ask the doc about to ensure he isnt aspirating when he attempts to swallow.
Keep up your husbands nutrition and hydration with at least 2500 calories and 48 oz of water daily for at least the first year. If he can take more in takes even better. After what he has gone thru it will quickly get burned up since his body is in recovery mode. Many days during my recovery I would take in 7000+ calories and I never gained an ounce. It took me 5 years post rads to gain any weight.
Best wishes! 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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Two weeks out is still early. I could not eat until the 7th week post treatment, and that was cream of wheat, peaches by the teaspoons, and that's about it, and just relied on my peg. Slowly I started trying new foods, adding them to my diet supplemented by glucerna. I can eat everything now, you name it, I probably ate it, and often take pictures of my dishes, which started out as celebration showing my first post treatment meal, now into a hobby, when others encouraged me to post more. I have maybe a thousand pictures lol, so that's a lot of meals. It will come in time, and there are ways to increase weight, taste, and swallowing ability to enjoy food, but this may be too early, and tasting is more thsn just eating. Do what you can do now with issues not often associated with eating, tasting, and appetite is treating mucocits, thrush and other bacterial, viral infections, dehydration, thick mucus, dry mouth, exercising mouth, keep swallowing, even dry swallowing, I lost 110 pounds from one treatment, and have gained 60 back, which took a while.
It is said, "use it or lose it!" which is true to some extent, but the tongue, taste and other swallowing muscles have memory, like other muscles in the body and come back to what it was, and I don't believe in no pain, no gain. The same for his weight, the body has an affinity to go back to your highest weight, which can be controlled by diet, exercise to fit your lifestyle.
Btw, I could not eat mashed potatoes for a year or more, it was a texture thing I could not tolerate. Now I make all kinds of potatoes.
You will find new pleasure in food, taste like you never tasted before, although not the same, but you will become a more discerning conneoisseur of food, I guarantee.
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
| | | | 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 | Dear Colleen, you have heard from two of the most knowledgeable people on this forum. At this stage, please pay a great deal of attention to his oral hygiene, so that in the unfortunate event of some of the liquid getting into his lungs, the bacteria in the mouth do not go down and infect his lungs.
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: May 2013 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2013 Posts: 42 | Thank you all for your input. Makes me feel so much better after reading hearing other reports. I know my husband will be pleased to hear this too. Always great to get the reassurance and feedback of other members. Thanks!
Colleen Wife/advocate for husband. 52 yo nonsmoker ISSC tonsil stage IVa. HPV + Enlarged node & tonsil, CT 2/13 Bx lt tonsil 3/8, PET 3/16 Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk Tx end 5/29 GT 5/24-7/17 Officially in Recovery Phase! : ) CT scan 8/13-NED ! CT scan 7/14-NED 5/2018- 5 year anniversary -NED
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Colleen. Just make sure at this point that he is at least swallowing water or some liquids every day. John couldn't eat anything this soon after treatments ended but he did swallow water every day. Hang in there!
Last edited by slim; 06-17-2013 06:18 AM.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
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