I am in so much pain. I can't swallow my own spit. My neck feels like it's on fire. I'm emotional. Now taking food through tube and meds.
Does anyone have any suggestions for coughing and neck pain. I am coughing so hard.

Larry Im sorry you are struggling! Try sleeping with a humidifier overnight. You may also want to try some over the counter cough meds. Many come in liquid form which can go right in the tube. Just always rinse after meds with at least 50cc of water. If you can rinse with 2 of the 60cc syringes after taking meds or doing a feeding thats an extra 4 oz every time which helps you meet your daily hydration goals.

If you havent already done so, talk everything over with your radiation or chemo oncologist. I think anxiety meds would help you to reduce the stress and hopefully make you feel a little better. Ask them for something that works quickly without weeks of taking it before you notice a difference. I think xanax is one that is good for occasional use so you can only take it on your bad days.

Im very sorry to be the one who is explaining this but radiation is cumulative. Most patients will feel progressively worse as their treatments continue. Even the first 2 or 3 weeks after you finish treatments rads still continue to work making most patients feel worse than they did while still doing treatments. But always remember... every patient is different. Not all patients will struggle, some sail right thru with little discomfort while others struggle from the beginning.

If your neck is hurting (like sunburn) pat some thick lotion on it and allow it to soak in. Reapply several times daily but never put it on a couple hours before you go for a radiation treatment. You dont want it to interfere. I used prescription beta-val cream and also silver sulfadine. Others have found over the counter Aqua-Phor to work for them. There are hundreds of others on the market too.

Hang in there! We are in your corner rooting you on.

Larry, radiation can make it difficult to swallow. John was unable to swallow even a couple of sips of coffee after Week 4. You may need to use the PEG for the time being, so don't feel bad about having to do so. It helps you to keep up with your nutrition intake and hydration. However, you must do your swallowing exercises daily and do dry swallows to keep the muscles in shape. This is vital.

Do a saline soak three or four times a day where the skin in your neck has broken down. I followed our hospital's suggestion of putting the saline on a J cloth. I then covered it with a clean dish cloth. Remove the J cloth after ten, fifteen minutes, then put the skin cream (like Pro Shield Plus, which is a barrier cream or what Christine suggests) on your neck, cover it with a non-stick dressing and put some gauze over it. The saline dries up the sores and helps them to heal. Just don't put any cream on your neck prior to treatment because it will exacerbate the effect of burning.

Is your coughing caused by the phlegm that has collected in your throat since you can't swallow your saliva? If so, rinsing your mouth with flat club soda to clear the phlegm will help, so will using a WaterPik on the lowest setting with a bit of magic mouthwash. John carried a bottle of water and a spit cup around with him for months. Keeping his mouth moist helped a bit with the phlegm. Sleeping with the humidifier on as Christine suggested helps too especially at night when the mouth gets dry.

It is a tough treatment and sometimes it feels like it's never going to end, but it will end. If you need to rant, we are here for you.

You can also ask the doc for an open prescription to get hydrated a few times per week. This will help you to not only maintain adequate hydration but make you feel so much better.

Hang in there!!!

Larry,

I seem to have had as poor a reaction as anyone and was unable to swallow probably for a good 4-6 weeks. One thing that helped me was to take on a lot (and I mean a LOT) of fluids through my tube (especially Gatorade type things) and then rinse my mouth with seltzer water/ginger ale. Following that, I would brush my teeth with a mint toothpaste, rinse, and practice swallowing a few times -- just water. This did burn kind of crazily, but it helped me.

I know it sounds insane and maybe it was just my own little routine, but the extreme hydration through the tube combined with using the carbonation to thin the throat/mouth gunk seemed to make swallowing easier. Also, the mint in the toothpaste seemed to kind of numb my throat a bit.

I have no idea if this works for anyone else, but it helped me swallow a few times a day at least. I hope I'm not steering you wrong here.

Good luck and try to remember (from someone that really struggled as well) -- it never hurts as much in your memory as it seemed to at the time.

Hang tough!

The Hellion

My husband is beginning to feel the burn in his neck and has lost all taste. It's more difficult to swallow, so he takes his liquid pain med (codeine) 45 before swallowing and the magic mouth rinse right before. I know it's hard for him too, but everyone can't stress enough how important it is to maintain nutrition and hydration. All of the advice on here really helps.
I wonder if some sugar-free mints wouldn't help sooth your cough. Miaderm is the neck cream the Oncology nurse recommended.

I am in hospital after vomiting several times. They found fuid in rt lung. Now getting antibiotic and pain meds in hospital. Had severe diareah.
This sucks.

Larry

Its really a good thing that your in the hospital. You will get the pain meds and IV Fluids that you need . My mom was very sick and in a lot of pain from her treatments also. Her throat and mouth were burnt and on fire so When she started vomiting that was double torture . To the hospital we went and that was the best place she could be .

I hope you feel better soon Larry .

Take Care
Heidi

Larry, if you have both diarrhea and vomiting, the help you can get in hospital is the best. They will ensure you are adequately hydrated. Did the doctors mention that the fluid in your lungs is from aspiration, that when you swallowed, the fluid went down the wrong way? Can they arrange a swallowing test for you?

Really hoping that you will feel better soon.

I can't swallow at all anymore. Now I am in hospital they found fluid and are giving me antibiotics. I am on morphine and tolerated my 1st feed. How does one fit 7 feelings into one day? And then the chemo and radiation Drs visits and sleep?

Do you have anyone to help you at all? It sounds like you are on your own.

Yes, it's hard to get nutrition and hydration through the tube. Many of us have and many will for the rest of their lives. It is just something you work into your routine. It sounds overwhelming because everything coming your way is so intense. It will get better and nutrition/hydration is actually one of the few things you can do that will make things much more comfortable.

In the past 11 years and 2 months I have gone through periods of no swallow twice. It isn't much fun and the second time I didn't have a PEG even. It took almost 100 days to get the swallow and digestion to start working but I did. The first time towards the end of treatment, it only lasted 37 days. You just get through it.

Larry, John was unable to swallow for two years -- starting from the third week of radiation and lasted until recently. He was on the tube all that time. He would have a feed (one box) every two and a half hours. There was one feed when he had to do one and a half boxes. This way he was able to take in six and a half boxes a day. I made up a spreadsheet with the feed times and the meds he should be taking for him to keep track of his feeds. We would bring feeds with us on doctor's visits because it is a two hour drive one way. We will come out of the doctor's office, do a feed in the car and drive home. This was one way we could get all the feeds in with all the medical appointments and not get too far behind.

I made sure we brought hand sanitizer with us in our 'kit' so we would have clean hands. We also brought bottled water (to use with the feed), a pill crusher, a small towel (to protect the clothing in case we spilled anything). I put everything in a ziplock bag so that I would know I had everything together.

I hope this helps. if you need more information, please do ask.

I also had a hard time getting enough PEG tube gravity feedings in every day. it seemed there were no minutes left in the day after my radiation, chemo, any other doctor appointments, and whatever amount of work I was able to squeeze in. First, I used a feeding formula that was calorie dense like Jevity 1.5 (1.5 cal/ml) or even 2.0 cal/ml stuff when I could get it. I would take two 8 oz cans with one can of water three times a day. It's a lot of liquid but I figured 3 x 8 oz = 24 oz and I KNOW I can drink two 12 oz beers. Doing it in three combined feedings/hydrations reduced the overhead of multiple feeding sessions because I would only have to setup, break down, and clean my feeding rig three times a day, plus another quick one I would do with just 24 oz of water, rather than 7, 8, or 9 sessions.

John only uses a 60 ml syringe to push the feed into his PEG tube. He finds he can only do one box 240 ml each time plus another 240 ml of water. When he does one and a half, he gets a bit "full." Larry, it depends on what you are using, gravity or just a syringe. You might also want to experiment a bit and find the schedule that works best for your circumstances.

I never could get as much as they wanted me too, and in fact I couldn't tolerate the formula very well. We even tried a different kind. I know we all need a certain amount of calories per day, and more to fight off the illness, but I think they sometimes forget to take into account body types and former habits ... I couldn't have taken in that many calories even on a healthy day when I COULD eat whatever I wanted. I am a small eater, and always have been. Forcing my stomach to do more than it actually could ended up harming me badly in the long run.

That said, I did make very sure to stick to a schedule of what I actually could manage, and kept on top of my meds and my hydration. That was the only way to keep sane about the whole thing.

As a general rule, if you are losing weight, your caloric intake is too low. If you are gaining, it's usually too high unless you have thyroid issues.

Thanks everyone. My wife helps me. She stays with me and gives me my feeds. Last Friday I was hospitalized with pneumonia and I'm still here on antibiotics. I missed chemo and 1 rad but had 2 rads this week. I am getting morphine. Still in much pain. Coughing up a thick phlegm. I am takng rest of meds in peg. I have gastro because I have ulcerative colitis also. I have a pulmonary dr who has prescribed a med to help dry me up. They are keeping me until nee toon is gone. My wife types what I want to say.
She uses two apps Carezone and calorieking to keep track of everything. I also have 2 daughters who are helping by taking care of house bringing us clean clothes. Wife stays with me in hospital.
I have had anxiety episodes due to the coughing and fear of choking. I also have mouth sores. Hoping I can go home soon.

I am in Alabama too, in Mobile. Thank you for answering. Good to hear so many positive encouring words.

I'm glad to hear you have such a crew around you. Your wife sounds like the perfect caregiver. You are one lucky man!

Unfortunately, meds to dry you out will exacerbate the thick goo and cause more of a choking feeling as it slides down the throat and sticks. Make sure you aren't laying flat on your back much as that will cause it to pool up and cut off the airway.

Try to slowly breathe deeply and work through the panic. The excitement in the body while going through that creates so many responses in the body that make breathing a little more difficult. You will gradually develop some strategies that will help you through the roughest times. Breathing through your nose while eating and a few things like that can help prevent inhaling food or drink. It all just takes time.

Hang in there!

Larry, sounds like you are in good hands. The phlegm will continue to bother you as long as you are not able swallow your saliva. Your saliva will collect at the base of your throat, where it thickens and you will have to cough it up. Keeping your mouth moist by rinsing it with flat club soda or the magic mouthwash will help. The fluid collected in your lungs only because you were trying too hard to swallow. There being nowhere for it to go, whatever it was that you were trying to get down went down the wrong way. A lot of people carry spit cups around during their treatment, and, really, nobody notices.

Have they given you anything for the anxiety? Anxiety exacerbates breathing issues and a feeling of choking ... which is NOT going to help you. I was already on anxiety meds before the cancer, and my doc helped me find ones that could be safely crushed, or taken in liquid forms, through my tube. It will help. And I don't know if you ever had allergy issues ... everyone here in North Alabama does ... and that sure doesn't help the goo and breathing. Just some ideas that might help. Not that anyone wants to take even more meds, but this is what they are for ... to get us through the rough times.

Will be thinking of you. Hope you are feeling better soon!

Bama or Auburn? :-D

I had CT and have collapsed lower lung lobes. On antibiotics and have breathing exercises to do. TGIF no radiation until Monday. Got my tongue good today. I'm on O2 now and am told taking baby steps towards getting well. No chemo until well. I've been using mouthwash and brushing teeth with mint tooth paste. Thank you to ya'll who have suggested helps. I'm a Michigan State Fan.

It sounds like you are on the upswing, again. Great news. I'm curious if you have COPD or sleep apnea? Did your doctors say why they believe your lungs collapsed?

It may be called atelectasis. I have that in the left lung, and an elevated diaphragm. Atelectasis can be caused by a number of factors, including after surgery, prolonged bed rest, pneumonia...My doctors were given results of the x-rays, including HBOT, but wasn't mentioned until I was having surgery. I start seeing my doctors next week again, so will address this. I do feel a more limited lung expansion.

http://en.m.wikipedia.org/wiki/Atelectasis

Interesting, Paul. Do you do any breathing exercises for that?

Part of the reason I am asking is because any fissures in the airway can cause the sac around the lungs to trap air and that caused collapsed lungs. Also, clogged lungs from excretions or COPD does the same thing and CPAP machines might make it much worse.

This is only recent Uptown. I saw it on the x-ray report for HBOT, and none of my doctors mentioned it a problem, so I paid it no mind until the pre-op oral surgeon doctor said what's being done about my lungs? Was busy with surgery, recovery since, and start seeing my doctors next week the first being my radiation oncologist, so hopefully I will get some answers, directions. I thought mine to be from surgery last year, pneumonia, and limited activity since.

Just protect those breathing muscles. That's probably the only reason I am still alive. I lived for almost a year using and ambu bag to expand the lungs and a few exercises all day long. Keep us posted, please, Paul.

I have O2 that has humidifier on it. Dr said they think I aspirate. I had pneumonia this spring. I am to have sonogram of liver tomorrow, they found a spot. I have not done drugs or drank just smoked. But know many people have fatty livers. I wasn't aware you can get a tumor in a short amount of time. I am having nausea frequently. I walked yesterday and today. I am hoping to be able to go home soon.
I missed chemo this week. Don't know what's happening this week yet.
My wife did have an idea of warming water and formula to my body temp by putting next to me. She did this because I would get nauseated after feedings. It didn't stop the nausea but helped.
I am spitting up phlegm that is very thick and has blood in it. I have used magic mouthwash and brushed teeth with mint toothpaste.
I also swallowed once today, a little water.
It's nice to have a break from radiation. Start back tomorrow.
They are checking blood sugar I asked why they said mine has been high. Blood pressure was low.
I do the breathing exercises every hour.