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#192774 07-24-2016 06:30 PM
Joined: Jul 2016
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My husband is almost 3 months post treatment (chemo/radiation) for stage IV oropharyngeal cancer, base of tongue up to epiglottis and in 7 lymph nodes, getting ready for 3 month PET scan. He has a feeding tube and is trying to eat, but has no appetite and is sick and tired of being hooked up to the feeding pump. Swallowing is still a challenge - some swelling in the epiglottis still. Any advise/tips/reassurance for appetite return. He has lost 45 lbs since diagnosis. Needs to get strong again and feel like he is getting better. Thanks for any suggestions and/or encouragement.

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Teresa, welcome to OCF! You have come to the right place for info and support to help you with your husbands recovery.

If your husband has difficulty swallowing, he should have a barium swallow test prior to eating to ensure he is physically able to eat. Some OC patients will develop aspiration pneumonia when they try eating but arent able to. Relearning to eat is lots of trial and error with most foods tasting pretty bad. To me everything tasted like burnt cardboard that was over salted. YUCK!!! Buffets are good places to start so he can try a bite or 2 of things and see how many things he can try. Just have a glass of cold milk or chocolate milk handy in case of having something spicy that burns. Even something as bland as chicken noodle soup might burn his sensitive mouth and the milk will help neutralize the spices providing instant relief.

My advice to help your husband is lots of patience and take in a minimum of 2500 calories daily with at least 48 oz of water. Since your husband has lost significant weight, he probably should be upping his intake to more like 3500 calories daily. His body has been thru the war and it burns up many, many extra calories trying to rebuild itself, thats why the need for the extra calories. The only way he will feel strong again is thru his nutrition. Ask the doc if he can add some high protein whey powder to his diet. Protein promotes healing. Since I originally found your post in the Easy to Eat Food thread, Im going to assume you already read thru the list, so I wont post a link to the thread.

The recovery phase can be very frustrating for most patients. They can never get well fast enough which causes unneeded stress. If he thinks back to the first few weeks post rads, Im sure he can see a big improvement in his health. Recovery takes a long time. Many patients report they still have taste improvements around the 2 year post rads mark. Going on 3 months post rads, your husband has a ways to go before he begins feeling like his old self. Maybe start by increasing his daily activities or doing some light exercising. A walk around the block every day can help him to feel better. Every week he could add another block or 2 so he will be able to see his progress. Everyone needs a reason to get up in the morning. Maybe having your husband responsible for certain things to help with his recovery or things around the house would help to make him feel more of a purpose.

He isnt alone in this and neither are you. Maybe taking with other OC survivors/patients would help? OCF has events all over the country, maybe there is one near you? Being a caregiver isnt an easy job. Make sure to take some time to take care of yourself too. Taking a break once in a while and doing something you enjoy can really help to give you some distance and time to catch your breath.

Best wishes with everything!


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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Posts: 1,024
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Hi Teresa and welcome.This treatment is so brutal isn't it. My Husband Kris also struggled with appetite and swallowing after his chemo/radiation back in 2011. He had to make himself eat and I remember he could only swallow liquids. If your Husband is having problems with his Epiglottis then swallowing will be fraught. Is he aspirating? Is this why he still uses the feeding pump? I hope the upcoming PET gives you answers and reassurances over his treatment. I think it is important and uplifting to know that treatment has been successful. Maybe after this , his spirits will be lifted and he can push on with his recovery. Remember too that his taste buds will have been affected. It's hard to eat when food doesnt taste good. He will slowly start to feel better. I used to take Kris out for compulsory walks. Very short walks to begin with as that was all he could manage, but we slowly built these up. Getting out in the fresh air is uplifting. Take him out to the movies, a walk on the beach. Encourage his good friends to come and visit him, spend time with him. Also never forget how lucky he is to have you, advocating and loving him.
I do want to tell you that this does get better, it does. It just takes time.
Listen to Christine's advice, it's spot on.
Thinking of you both, Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Hi Teresa, welcome to the forum.

My husband still had a swollen epiglottis three months after radiation. I was told that swallowing was something we needed to be cautious about as when swollen the epiglottis could not move to cover the airway during swallowing. This would lead to aspiration which can be dangerous if pneumonia develops as a result.

Your best course of action at this point is to push for a barium swallowing test which can show you/your husband whether he can swallow safely, what thickness of liquids (nectar grade/honey grade/pudding grade) would work best for him or the kinds of food he can manage. Here in Ontario, Canada, the wait for a barium swallowing test is anywhere from 8 weeks to ten weeks. So, we tried to get in the line as soon as we could and also asked to be placed on the cancellation list.

It is a frustrating experience as Tammy said, your husband will need some a huge dose of patience.


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.

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