Hello! It has been awhile since I've posted, but thought I would "vent" a few issues that my dad is having on this forum. It always seems like the suggestions I give him to try from ideas on the forum are more than any doctors are giving him. This might be a long post - so stick with me!

1 - worst problem BY FAR is my dad's excessive mucous. This summer has been HORRIBLE - but the tremendous heat and humidity we've had in Iowa hasn't helped anyone out....but I find it weird because in the winter the docs have told him to use a humidifier to HELP with mucous....strange huh? It seems he's tried about everything.....the mucous just won't stop. And now it has a pretty nasty odor....I think it just comes from he having such an excess, cleaning out his mouth, and 15-20 minutes having a mouth full AGAIN. (by the way...he is on a PEG tube and can't swallow, so he has to cough and push everything out.) He mentioned he lives his life now in the toilet bowl. Any suggestions? He has a prescribed mouth rinse and a nasal rinse he has been told to try, but it works right after he cleans everything and when the mucous presents itself, it smells again. Oh - and the mucous is so bad he can't sleep.....he's taken a few Tylenol PM's, but mom is scared he will choke on the mucous.

2 - neck pain in the shoulder blade area and jaw area/temple area/ear....this is the side he had all of his radiation on....he can MAYBE open his mouth 1-2 cm.....so i think some of this is just pain from post radiation and also not using his jaw. He stretches his mouth daily, but can't get it very wide open. Is there something that can be done from "pain" after radiation? the muscle "stiffness?"

3 - tiredness....he seems to sleep more now than he did while going through his radiation treatments LAST summer. Maybe it's just the hot summer and the excessive mucous is making it so he can't sleep, so therefore he sleeps during the day - but this worries me. Anyone STILL tired a year out of treatment?

My dad is usually such an upbeat and positive person...he's not only an oral cancer survivor, he's a skin cancer survivor, and has survived leukemia and a complete stem cell transplant from his sister over 16 years ago. He has been through SO much...this summer has just been tough. Tonight he broke down and said that when he's gone someday, he doesn't want my mom and me to remember him the way he is now....a mouth full of mucous and going to the bathroom to clean his mouth out every 10 minutes. Makes me really sad to see him SO unhappy after fighting SO hard all of these years. Why can't the mucous just stop? Seems there is always something. I love my dad SO much and can't imagine life without him (he's only 62)....please pray for some relief for him. He goes to Omaha on Monday for a checkup - I hope they can help him. Any suggestions for the odor/mucous/muscle stiffness/achiness would be SO appreciated.

Thanks for listening and sorry for the long post - just a GREAT place to vent and MAYBE get some ideas to pass on to him.

You know D, it's tough to help when there isn't any posted information about what treatment your dad has had in your signature. The more information you give about what treatment your dad has gone through, diagnosis etc...the more we can be of help.

Obviously he's been through radiation and is experiencing mucocitis, of which I don't know of any treatment for other then keeping the mouth area clean or Caphosol or Mugard rinses...I haven't experienced mucositis since shortly after treatment, I really can't help there.

CRF (cancer related fatigue) I do have experience with and have several suggestions to try and help ease it. I will say that CRF is experienced by many for years after treatment...I'm 2.5 years out of radiation/chemo and I still suffer from it. Getting the thyroid checked should be the first step, as well as the adrenal glands. Testosterone levels should be checked as well as radiation to the head and neck can damage the pituitary gland and the hypothalmus, both of which play a factor in testosterone production. If your father is still on opiate pain medication, this can play a factor as well. Some opiates depress the central nervous and cardio-vascular systems which will cause fatigue and low blood pressure. A sure sign that this is an issue is if your dad has issues being cold, even in very warm weather (also a sign of thyroid which is easily confused for).

Some things that have helped me is testosterone therapy and plenty of B vitamins, which I get through 5 Hour Energy.

As far as the pain goes, it could be several issues depending on what your dad has gone through. Since it is on the same side and general area(temple, jaw, neck, shoulder) it could indicate nerve damage and he's experiencing neuropathy, nerve pain induced from nerve damage. Patients who've had Neck Dissections have had similar issues, including cramping. I've also heard of deteriation of nerve tissues after radiation that's caused nerve pain and partial facial paralysis. I suffered severe neuropathy after my Neck Dissection and Fibular Free flap surgeries, however my facial nerve was compromised and the severe nerve damage was the culprit of the nerve pain. After my nerve graft, the nerve pain has greatly reduced.

Anyway without knowing more we could shoot in the dark all day.

Hopefully this helps, with more info I hope you can get some insight to help your dad.

Eric

He has been through sooooo much I wouldn't have enough room, but...I will try to gain access from my mom....a huge notebook from 16 years of medical treatment. Thanks for the response.

My husband used musinex(spelling?) and that helped thin the mucous so the gagging feeling wasn't so intense.

Erics,

Thank you for the information you posted yesterday, I went to my GP this am and had them run tests for my thyroid, I have lost almost 100 lbs since treatment(radiation and chemo) started in may 09. I had a feeding tube until oct, and have only really started to be able to eat a larger menu a few months ago. I have had some swelling in my thyroid area and have been told it was normal after radiation in alot of people, that with the weight loss and fatigue didn't seem to get anybody's attention as I also have MS and they have blamed everything on it, but after reading your post about being cold all of the time it all came together, my wife is having her personal summers and I am sitting in the same room with sweat pants and sweat shirt on trying to stay warm. The dr agreed and is asking why niether the radiologist or oncologist have tested me for it up to now.

Has anybody had any numbness of the lips or gums from this, the front part of my chin along with my lower lip and the gum in that area are are like they would be if I had dental work done in the area. My nuerologist is blaming it on the radiation and the radiologist is blaming it on the MS

JScott

EricS is right on the money. I'd add that when you get the test results back, ask for the actual TSH levels. While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level went down to
3.04 on 25 mcg ,2.17 on 50 mcg and now 1.73 on 75 mcg. Of course there could also be nothing wrong at all with your thryoid . But it worked for me.
Charm

D

Has your Dad tried a suction machine? After my surgery, I had very similar problems to your dad with the PEG and choking on mucous. They sent me a little suction machine that I could vacumn out the mucous. I did have to get up three times a night but eventually it got better. Insurance usually covers it and its very simple, just plugs in, and is a mini version of the one they use in the hospital. It's easy to change the collection chamber. It's is awful but better than using the toilet bowl all the time
Charm

Have your dad try Club Soda for the mucous. Swish and spit. worked great for me.

Charm,

How long did it take for"the pill" to take effect, I've read different places "several weeks" They put me on Synthroid.

D

defintely try the suction unit, it made all the difference for me along with sleeping half way sitting up ( 5 pillows ) I had more problem when I laid down. I had quite a few nights were I slept in my chair in the living room.