Hi everyone...I am so pleased to have found this forum. My name is Deb and I am the wife/caregiver of my awesome hubby Ted, 63 who had surgery on May 5th,2015 for a stage IV tumor growing inside mouth and penetrating the jawbone.The surgery was successful, he recovered, and then started radiation, and finished a 6 week stint 2 weeks ago. The radiation, he says has been far worse that the actually surgery of 10 hours, and the bone and skin grafts from his leg. He is wanting to know if there is any trick to breaking the very thick mucus in his throat other than the salt/baking soda rinse and how to get grid of the the "taste of death" as he calls it, in his mouth. He is on a PEG and about the only thing he can tolerate in his mouth to swallow is water. The healing is very slow right now and he's feeling very discouraged. How long was it before any of you started to get your strength back and feeling the 'new normal'.
This has been a very lonely journey, not that we don't have great friends and family, but there is only so much of this journey that they can walk with you through. It's something that no one can explain to you in the beginning and you learn to adapt and overcome as you progress. Appreciate being here.

Hi Deb,

So glad you found OCF. I understand the loneliness you are talking about because no matter how much support you have from family and friends they aren't able to fully understand what you are going through. This forum was super helpful for me when my husband went through his treatment and definitely helped with the loneliness. My husband is 1.5 years out from treatment and doing really well. It was a slow recovery and he didn't start to feel significantly better for about 2 months after his chemo and radiation were finished. The mucus started to subside at about 2-3 weeks. You and your husband are probably at the worst of it now and it will get better. The thick mucus was the hardest part for my husband. He just had to wake frequently and try to hack it out. Please let your husband know it will pass. Keep coming back to the forum. There are wonderful people on here who have been through this and will be able to help you both. You both can and will get through this. Make sure you treat yourself in some way every day because this is really hard on the caregiver. Good luck!

Randi

Welcome to OCF, Deb & Co! (Great screen name ) Im so glad you have found our group! We can help you with info and support. You hit the nail on the head saying others can only understand and help so much. Our site is made up of OC patients/survivors and caregivers. We have gone thru this and seen first hand how awful OC is and its brutal treatments.

At only 2 weeks post rads, your husband has a long way to go before he will crawl out of the tunnel. Most patients will say the first 2 or 3 weeks post rads were the worst of the whole thing. Radiation is still working, just like you are still being treated and thats when you feel abandoned by the medical team.

To make his recovery (and everything else easier) focus on his intake. Every single day push to get him to take in a minimum of 2500 calories and 48-64 oz of water. If he can take more, say 3000 or 35000 calories with a focus on protein intake this would be even more helpful. This is what will get him back on his feet. If he is using the feeding tube for his nutrition then remember to count the fluids there as water too. Also adding water to the mix (if he is using the feeding pump) or an extra syringe of water to flush the tube helps to keep him hydrated.

In a week or 2 the thick gunky mucous will change practically overnight into dry mouth. Using a waterpik on its lowest setting with a tiny amount of mild alcohol free mouthwash helps with the gunk and the bad taste.

Hang in there, the worst of this is just about over.

Welcome Deb & Co., and congratulations on a successful surgery! I also found surgery the easiest out of all my treatments, and have been through all that is currently being experienced.

As far as thick mucus, thick salvia, aka rope mucus, it's mostly from the parotid gland being radiated, chemo can do it too, which produces mainly thick saliva, the other two is a mixture of thick and thin, and the fact that radiation only effects thin saliva, not thick, which thick saliva usually lasts several weeks until the parotid gland, as well as others start recovering or other major and minor salivary glands compensate for its loss. That also depends on the radiation dosage, areas radiated, volume, fractions.

There are ways to help with this as listed below, but check with your medical team as the odd taste, and inability to tolerate anything can be from a number of things such as an infection, like thrush, mucocitus, vitamin deficiency, altered kidney function, other medications.

As far as feeling better after all my different treatments/procedures, I had about 10 or so, I say 3 months is when I stared feeling somewhat better, I guess from acute toxicities, although I never fully recovered from everything, some taking several years, then long term side effects start kicking in, but you learn to roll with the punches by then.

Impeccable oral care, rinsing, flossing after each meal, before bed
Adequate hydration, Drinking water before bed
Milk enzymes replicate saliva, doesn't chance thick saliva as rumored
Sleeping with a humidifier
Sleeping on an incline
Robitusm, Mucinex
Rinsing with papaya or pineapple juice
Rinsing with meat tenderizer diluted with water
Chewing sugarless gum

I hope this helps, and good luck!

Thank you Randi for the information and encouragement. It really means a lot to both me and my Ted. I will be checking in regularly. Glad to here you hubby is doing so well...blessings to you both!

Thank you Paul for all your information...very helpful and we will give some of these 'remedies' a shot. One other thing that really helped him in the beginning of RAD was Manuka Honey from New Zealand. It really helped with the blistering in his mouth but then the taste got to be too much for him. You can get it through Amazon and it it has many healing properties way beyond regular honey. Here is an article about the honey if interested. http://draxe.com/manuka-honey-benefits-uses/

Ted and I appreciate you taking your time to share your information with us and connect. It really means a lot when there are so many uncharted waters to navigate and you feel like the winds are blowing you this way and that.

Blessings!
Debi

Yes, Manuka Honey too, although I never used it $, other then organic honey, which burned my mouth anyway from the sugars, so I never bothered buying the Manuka honey. Virgin Organic Cocunut Oil, which has antibacterial properties too, can be swished, swallowed or rinsed with the salt water/baking soda rinse, adding glutamine powder or on its own help with healing. Forget to mention rinsing with carbonated soda, which can be left to flatten a little, helps break up mucus, even beer, but that may be a while :), rinsing or drinking cool tea, and egg drop soup helped loosen mucus, at least when I was able to eat, and steam from a warm shower helps loosen the mucus. Some use a netti-pot, I never did though.

Christine...Thank you so much for the helpful info. I'm glad I found you too. Ted is on the PEG and getting about 1800 to 2000 calories a day from FiberSource and then I'm trying to implement in between feedings some 'real'food in the Vitamix like chicken soup and fruits and veggies. I have to keep it thin enough though so I don't clog up the tube. He is getting 74 oz. + of fluid a day.I would love to get any recipes for the Vitamix that anyone can suggest.
Thanks again for all the love and understanding...means the world to us right now...Blessings

Deb

Great, we'll look into these helpful suggestions as well.
Thanks Paul

Hi Deb,

Welcome to OCF! I was fortunate to not get any of the ro[ey mucous but keeping posting the other side effects as there is a good chance some of here have something to share how they got through it. Don

Hi Deb. I finished up my RADS about a month before your husband, and I had the exact same complaints about rope mucous as he does. The advice you've already gotten here is pretty good. In my own case I started to get rid of that about four weeks ago, and it is completely gone now. Of course my current complaint is dry-mouth, but at least that isn't waking me up at night from choking.

I have been at work full time now for 3 weeks and can say things are really getting a *lot* better. You're almost there!

Deb,

I gargled with regular club soda and then ginger ale when I could handle the taste. The carbonation seemed to help for temporary relief.

The Netti pot is a damned godsend after waking up. If he hasnt used one, I would try the squeeze bottle kind. I went thru probably 500 of the solution packets recovering, they are cheap on amazon.

I would spray the back of my throat and then use it thru the nose. Sounds gross, but judge me after he tries it.

Thumbs up on the Netti pot. It's been quite a while now, but I still remember my son using it and it really helped.

If you have a Waterpik, you can get your hubby to clean his mouth several times a day. You should use it on the slowest setting, with warm water and a bit of the magic mouthwash in it. It works like magic.