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#38274 03-16-2005 05:54 AM
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Hello,

I did not have a PEG, so I don't know if this will help. My oncologist recommended taking Mucinex, an over the counter drug, to reduce the thick, ropey mucus and resulting nausea/vomiting. It worked fairly well. I ended up only being nauseous in the mornings after each night of build up.


7/04 SCC Stage II Tongue
8/04 Hemi-glossectomi
9/04 IMRTx33
#38275 03-16-2005 05:14 PM
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Jen,

Anything with Guaifenesin like Humibid or Robitussin would help thin the stuff out, along with lots of water. Even a little pediolyte in the tube would replenish some of the electrolytes with all the vomitting. Make sure you are getting lots of regular (2-3 times per week) bloodwork to keep your electrolytes balanced. Sodium and potassium issues at this stage could be fatal. The goo will last for at least 2-3 more weeks. Unfortunately, I am not the one to recommend anything for the vomitting as I spent most of my time crawling from the bed to the bathroom. It got so bad that I was screaming from the acid burning my throat for many days. I tried about every drug known to man and nothing worked very well. I could not use the PEG because about 15 minutes after anything went in, it came right back out.

Keep spitting the gunk out and soon it will get better. Just imagine Crystal Gayle singing in the background, "Don't it make your brown goo clear!" Once it starts getting thinner and clear, it will get better. I had to switch over to IV feeding (TPN) about where you are at now and for many weeks. I also had 2-3 bags of fluids through my port almost every day.

I am glad your treatment is winding down. You have reached a very important milestone. I have thought of you a lot lately and hope you are doing as well as you can right now.

Ed


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
#38276 03-17-2005 07:22 AM
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Jen,

I forgot a very important thing about the Robitussin or OTC equivalent. Be sure and put it in the PEG. DO NOT DRINK IT!! It will be like drinking liquid fire and will burn so much you will hate me for life. I am really sorry if you have already tried it frown .

Ed


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
#38277 03-17-2005 05:40 PM
Joined: Aug 2003
Posts: 1,627
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Jen, I also only took sips of water from about week four of radiation on. I kept a water bottle with me at all times. I remember the mucous starting to dry up around week three after radiation ended. How are the kids doing with it all?
Hang in there.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#38278 03-19-2005 08:58 AM
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Posts: 191
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Kids are handling things as well as can be expected. Really, they just don't go to as many martial arts classes as they would if I weren't sick. That's a small sacrifice. I'm amazed that my spouse has taken over the stuff that I normally use to do... the meals, the grocery shopping and the driving the kids to lessons etc. I think he's got a whole new respect for what I've been doing the last 15 years of marriage. The "behind the scenes" stuff he didn't realize was so exhausting or time consuming. He's also having fun because he's having to do more with the kids.

The flem is really bad in the mornings. I'm down to 104 pounds, but I'm holding steady. I try to work in the PEG feeding for when I've yakked myself out between attacks. I'm just so weary of being on my knees trying to get some stuff I really don't want to see out of me.

I'm going to be a sport and give it more time to let up. I just wish I had a "feel good" point. Half the time I'm surprised I made it this far, but man.....I'm not about to take feeling good for granted anymore.

I just wish I could predict a day that I can say "hey.. I feel good"

Maybe that will come in a couple months.

Jen

#38279 03-20-2005 02:21 AM
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Posts: 1
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I came to the forum today hoping to find some ideas on handling the problem with the heavy mucous. My companion has just completed 4 weeks rad and is currently having a difficult time with this problem. Thanks to all for your postings/ideas. I will suggest them all. He did try OTC cough med and made the mistake of taking it by mouth -- lesson learned..


Companion - SCC Stage III tongue, Diagnosis 1/05, Radiation/Chemo therapy
#38280 03-21-2005 06:29 PM
Joined: Dec 2003
Posts: 2,606
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Jen,

Soon you will stop at the end of a day and say exactly that..."hey...I feel good". You will have a lot of bad days mixed with a few good days and before you know it, you will be having more good days than bad days! Hang in there and look ahead to the light at the end of the tunnel. It is just around the corner.

Ed


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
#38281 03-21-2005 06:31 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Val,

Don't forget the obvious...humidifier at night (or all the time when the heater is running), propping up the head to prevent choking, coughing the goo up as often as possible and keeping the mouth and throat a little damp with water.

Ed


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
#38282 03-21-2005 07:31 PM
Joined: Jan 2005
Posts: 10
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Posts: 10
Jen,

you brought back a memory!! The lovely rope of phlem! My one tip for the coughing so hard you make yourself vomit....open up your peg tube. It was easier than throwing up via your mouth. And it stopped the gagging. My other suggestion is drinking more water. I do remember just being able to literally pull out a rope of phlem.

Try the peg tube open in the sink, it helped!
I went thru chemo and radiation with a three year old so my heart is thinking of you!

C

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