I read over and over again that thick mucus is part of recovery process and there is no good solution to combat this side effect.

At 10 weeks post-tx., my husband can swallow, but the muscus is delaying all aspects of his recovery, (eating, drinking, & mental attitude). He does have PEG. He is now voicing that he feels that he can't cope anymore with this choking feeling.

The recent pattern has been that it goes away for a day or two. He's then able to increase diet and activity level, and then it returns and he backslides.

We've tried Robitussin, and suction machine when in hospital for a procedure, and neither helped.

I don't know what response I can expect but we're starting to become frantic over this side effect. Can one live like this long term?

Don't give up hope. He should be right at the turning point where it will suddenly stop being such a major problem. There are different meds that can be taken to mitigate the mucous but be aware that some can temporarily make drymouth worse. Thrush can also be a contributor at his early srtage of post Tx.

Things that sort of worked for me was insuring that my throat was as clear as possible before eating anything. Water, carbonated water and different swish and spit solutions such as saline, baking soda, etc. may help. Start with the least toxic and experiment with different things. Sleep slightly elevated as well. I also ran (and still do) a humidifier 24/7. See if the doctor has any suggestions as well.

Very nasty stuff! I wish I could offer something substantive but I agree with Gary that he's probably about to to crest the hill time wise and see some improvement. It took me several weeks to get by this and constant foaming in the mouth once my tx had ended. What is his RO saying?

I am about a week farther along and also received radiation appropriate for a BOT primary.

Although I never suffered through the excessive mucous problem, this area of the throat has and still is my most significant healing issue.

Often the "swallow muscle" part of my throat seems quite tight and constricted. For weeks I had spells when a persistent ticklish irritation would develop in that area and cause me to have coughing spells.

Finally that irritation seems to have subsided, but the recurring tightness/constriction is still an issue and I think if I added mucous it would definitely equate to 'choking' like spells.

Of note, my ENT told me this area takes months to heal and normalize and he said in my case this seems to be the area where the radiation damage is the most significant and evident.

Also the radiation left:
-- short deep creases around my chin where I had had prior reconstructive surgery. The creases have now gone away.
-- extremely tight skin along the sides of my neck that has now loosed up.
-- a double ridge of excess skin hanging down the middle of my neck that is now gone.
-- And, Now I have developed a golf ball size jello like wad hanging around and below my Adam's Apple.

The ENT thinks in couple months the jello golf ball will also subside. So things keep changing every month.

Thank you all. We've tried all suggestions except humidifier.
I guess we're worn out and at this point no longer resilient. My husband has always been physically fit, with great stamina. I expected that as horrible as the side effects were, once he started to improve and could swallow, it would go faster than this. But this darn mucus...

RO says this will pass - no abnormalities when scoped. Clean PET @ 8 wks post-tx. Reports sounds good but mucus is becoming debilitating. Lottie

Gary listed the options. Cans and cans of seltzer water plus a whole house humidifier got me thru a similiar period. that choking feeking is terrible and I had to lug around a "spit bucket" (actually a cylindrical mini igloo cooler type) because I was constantly swishing the mucous out to clear my throat.
It seemed like it would never get better - My sympathy to your husband.

That mucous is always getting in my tongue where it was removed on both sides and where al the biopsies were taken. I actually have to use a paper towel and my fingers, along with water to get it off my tongue and other hiding places it seems to locate. Very nasty goo for sure.

Doea you husband rinse with water baking soda and salt mixture? If not he should be doing that several times per day, it will help. Its a quart or water and 2 teaspoons baking soda, and 2 teaspoons salt (the salt can be omitted or cut back if it bothers him).

Please remember, most of the people responding to your posts have gone thru this as patients. Its a very difficult thing to go thru but it can be done. Some OC patients and their caregivers too have needed anti depressants to help them cope.

One thing I have found most helpful is attitude, it will make things so much easier to think of the good. I have had OC twice within a year and have been left with some pretty bad long term after effects which may be permanent. Your husband is very fortunate to have had a such a wonderful caring caregiver. He is also very fortunate to have won his battle with OC. Congrats on the clear PET scan. It will get better in time. Patience is key as recovery will take quite a long time.

Christine - Yes, my husband has been using baking soda/salt sol all along.

Regarding attitude, he has a naturally optimistic personality (a great sense of humor and always looking on the bright side is actually how his friends describe him). Allowing this to get him down has been a shock for him (he's never experienced even mild depression, even when going through difficult times in the past).

He has appt with MO coming up. They have a great relationship. If this continues, I will bring up anti-depressants but am hoping that the mucus part will lessen by then. Up until this return of thick mucus, he was coping well.

Thank you, Lottie

The attitude is the mani weapon fightint this disease. You have to go into the battle saying I am going to win and doing so. Positive is the way and upbeat worked well for me.

Lottie:

Cancer can really beat you up mentally. It does take alot out of someone who has always been an active person and they arent the same anymore. Im glad you will ask the doc if it continues. Most of those meds take a few weeks to work.

I struggle with the upbeat attitude at times too. I got sick when I was 44 and was always very active. Im a single mother raising 2 children without any assistance. When I got sick it was devastating to not just me but also my chlldren who needed me. I still cant do everything like I had before which bothers me, but I make the best of it and do what I can.

Nutrition and hydration still do play an important part on how you feel. It will be like that for a long time. Try to get your husband to consume at least 48 oz water and 3000 calories per day. After a couple days like that he should feee a little better. Since he has the peg tube, maybe try for 53 oz of water, that should help thin out the mucous. Also if nobody told him, he should be stretching his mouth open as wide as possible several times per day.

Hope this helps. I know its difficult, probably the hardest thing both of you have ever done. Hang in there it will improve. It just seems to take forever.

positive attitude + cancer = cancer POSITIVELY sucks!

Lottie, we all understand, trust me. Attitude helps a lot but isn't much benefit when you feel like you are choking to death. i would be calling his docs to find something to help. anti depressants may well help, as they would calm him when he has the choking feeling - because when you get a scared feeling it makes your throat muscles respond by tightening which makes it worse ... but do talk to them and find something to take for it so he can get some relief.