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#199333 10-27-2019 02:27 PM
Joined: Oct 2019
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Joined: Oct 2019
Posts: 2
Hello everyone - my first post here. I found out about this website through my mom's speech therapist. My mom (80) was diagnosed this past summer with a tumor in her neck and was operated on in early August. Unfortunately, the tumor was attached to a nerve in her tongue and long story short she is now home post hospital and rehab unable to swallow food. Her biggest issues right now are having to use a feeding tube (Bolus method) and the incredible build up of mucus she gets every day. We are trying different things for the mucus and we are hopeful she'll get her ability to swallow back one day, her surgeon has said it's just a matter of time that everyone heals at a different pace.

We are now looking to get her outpatient speech therapy as her in-home has ended. Her in-home recommended we go to a place that has therapists dealing with cancers of the head and neck. We will also meet with a radiation oncologist for a consultation.

I'm here mainly to learn all I can through this forum as we navigate through this.

Thank you.

Joined: Oct 2017
Posts: 36
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Contributing Member (25+ posts)
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Joined: Oct 2017
Posts: 36
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Hi there

I still have phlegm after treatment finished. sometimes I have to clear like every 20 minutes

I am still on Ensure via PEG, although I can swallow some minced food

Radiation can be very hard.

Good luck


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF!

Im very sorry to read about what you and your mother have been thru! Im sure all of this can be overwhelming to each of you at times. No, its definitely NOT easy for the patient or the caregiver. But working together closely with the medical team of specialists and with some helpful tips from OCF friends you both will get thru whatever you are facing down the road.

As far as the mucous goes, what has her doctors said about it? If this is something new only since the surgery, you would want to rule out an infection which can easily happen to anyone who has had a recent surgery. The mucous mention by Mike was something unrelated to your mothers situation. When oral cancer (OC) patients go thru radiation treatments after they're completed almost all patients have thick ropey mucous for several weeks. Your mother has not had rads yet, so her mucous would not be the same kind as what you may read about here. When trying to treat mucous, allergy or cold meds have things that dry out patients mouths/nasal cavities making them prone to infections. Ive been thru the same thing and have had what appears to be a head cold for over 12 years which I take prescription singular and over the counter liquid childrens benedryl on a daily basis. But every patient is different where this may not apply to your mothers situation. Id check with her doc on what options she could try after the doc rules out the mucous being the result of an infection.

Theres tons of info here on our patient support public forum and on our main OCF site as well. You could easily spend many hours reading more about OC and things pertinent to your mothers medical condition. An informed caregiver or patient make for the best advocates! Feel free to ask us any questions too. We always will do our best to help everyone as much as possible.

Best wishes with your mothers upcoming consult!!!

PS... Since you said your mothers biggest complaint is the excess mucous, ask the doc if a portable suction machine would be helpful. This can be obtained thru a doctors prescription thru a local medical supply company. This can also be done by the nurses at your mothers specialist doctors offices like an ENT or oral surgeon. It never hurts to ask! "If you dont ask you dont get!" is one of my sayings, I even taught it to my children when they were little and afraid to ask for something. After I went thru rads, I had the thick ropey mucous like what Mike mentioned above and struggled to get it out of the back of my throat. I could never completely get it all, no matter how hard I tried. It wasnt until I was well into my recovery before I had a nurse suction out all the gunk. I immediately felt soooo much better!!!
...The pink or green sponge tip mouth swabs any hospital, ENT, oral surgeon/dentist offices should have on hand can help to get the gobs of mucous out of her mouth too. They can be purchased online, at most pharmacies (especially those that sell durable medical equipment), or maybe even at some grocery stores. You can ask the nurses at your moms upcoming doctor appointments, maybe she'll get lucky and they give your mom a few. A water pik used on its lowest setting filled with warm water and some non-alcohol mouth rinse like prescription peridex is another idea to help her.
...Patients can help maintain the ph balance in their sensitive mouths by 4+ times gargling with a mixture of 1 cup warm water, 2 tsp baking soda and 2 tsp salt. The salt may be uncomfortable or burn her mouth so you may have to try a few different combos lessening the salt content until you find one that works beast for your mother. Salt water helps promote healing so try your best to keep as much in the mixture as you can to get the most benefit out of it. She should take a tablespoon or about 15cc sized amount in her mouth and swish it around as much as possible to help loosen and remove mucous, after about a minute spit it out and repeat the process a couple more times.


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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