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#186887 11-28-2014 02:49 AM
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My mother has landed in the hospital with what is believe to be Mucositis . After taking Chemo treatment her lips and inside her mouth are blistered . But the biggest problem is the mucus is so thick and severely pouring out of her mouth. Could her mucus membranes be ruptured ? The doctors have ordered several rinses but nothing is working to stop this.
I know she should expect some extra mucus but this is unbelievable .
Has anyone ever experienced this ? If so how long before this heals ?


Thanks
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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Heidi, keep in mind, what you are seeing in the mouth and on the lips is most likely happening from mouth to rectum. The purpose of the thick mucus is to protect the damaged areas and flush out the destroyed tissue. I know I keep saying this, but it is imperative to keep hydrated so the body can do it's job. Not knowing the specifics and not being there, I can't tell how much water or other hydration is being done, but it doesn't sound sufficient.

Is your mother taking guafenesin in any form? It's a must to keep the mucus as thin as possible and still flowing. There is an alcohol-free, sugar-free liquid that shouldn't burn. It's called Siltussin SA and is not long acting so it needs to be taken every 4 hours. The OTC versions have a lot of alcohol and will burn beyond belief. Ask the doctor for a prescription.

There are some other options like GlutaSolv that will help promote regeneration of epithelial cells, also.

It may take a while. It's too variable to tell but without food and hydration, it will keep getting worse.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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You mother is at best place to be if she needs to be hospitalized to find out what's going on. I had severe Mucositis just from chemo, which was one reason for my hospitilaztion back in 2009. As Uptown mentioned, mucocitis can effect mucous membrane throughout the body, and affected my lips, mouth, throat, esphogus and stomach. There are different grades, 0-lV, and mine resulted in being NPO, abbreviation for a Latin phrase, "nothing by mouth" for several months, and was just on IV, and didn't have a feeding tube. As far as the thick mucus, I had that too, but don't know it's relationship to Mucocitis, which has different phases of initiation to healing, and may be part of its process or salivary gland dysfunction from chemo or others. The hospital used the Aspirational suction machine to get the mucous, fluids out, soft sponge tooth brushes to clean the mouth, rinses, plus others measures. Later on I used mucenex, for mucus, and nystatin for the infections, which can occur from ulcers, so cleaning the mouth is important, besides being on systemic antibiotics.


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: Apr 2014
Posts: 236
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Thanks so much for the replies . They are very helpful.

She has been in the hospital for 4 days now and it doesn't seem to be getting much better yet. The nurses are working on increasing her feeding tube intake. They have her taking 4 cans now and trying for 5 cans . That is in 24 hours .

She was doing really good after her first chemo treatment. She was eating more along with the feeding tube so I wasn't to worried. But now since this second treatment she is having all these problems and her eating has stopped completely . So I'm really glad she's in the hospital.

The doctors have her on two different rinses and she's rinses her mouth constantly . I am going to talk to her nurse about giving her some type of guafenesin to help thin the mucus. Thanks for that info Uptown . Hopefully we can see an improvement soon.

Thanks
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Oct 2012
Posts: 1,275
Likes: 7
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Heidi, with the transition to the feeding tube, please have your mother do dry swallowing whenever she can. She may not be able to swallow anything, but the action of dry swallowing keeps her swallowing muscles working. It is imperative for when the treatment ends and when she starts eating orally again.


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: Oct 2013
Posts: 559
Likes: 1
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I had mucositis in the last week of treatment and for probably the first 4-6 weeks post treatment. While mine was minor compared to your mothers, it was still annoying and painful, requiring the use of pain meds (oral lidocaine) especially at meal time. Without oral lidocaine I would have been forced to take pill type pain relievers and they probably would've had to be something strong.

While I didn't have mucous pouring out of my mouth like your mother has, I do remember it being quite thick and seeming to hang in my throat, requiring a lot of hacking ans spitting to remove, particularly after waking from a nights sleep. Beside the mouth tenderness, thick, gummy mucous was my biggest problem with mucositis.

good luck to your mom,
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
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Heidi, try to make note of the cycle or stages of chemo. It is spread out over weeks for a reason. All chemo has it's own cycle. You will always feel better just in time for another slam. It is bad and the body is fighting it. You should know when the nadir period is so you can protect against infection, germs, colds, etc.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
OP Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Mom came out of the hospital 3 days ago and seems to be doing just a little bit better. The Mucus slowed down just a little but it is still running through her mouth uncontrollable. She complains of how thick it is. Im going to the pharmacy to get something in the order of Muscinex. Hopeful that will thinen it out and help it to go away.

A CT scan will be done next week to see if the Cisplatin F5U is helping and if not then the Doctor is going to stop the treatment. He said no sense in going through these horrible side effects for nothing. He talked about Erbitux being the next step. I guess we will see what the Ct scan looks like and go from there.

She is up to 4 cans of Jevity a day now and she is starting to eat just a few spoons of something soft again. So thats looking up also.

Thanks for all the advice everyone .It is highly appreciated.
Heidi

Last edited by sweetpe1; 12-03-2014 03:41 AM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015



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