My husband (Stage 4b with primary in tonsil) completed 15 weeks of treatment just over 3 weeks ago (induction chemo with three types of chemo followed by chemo/radiation). He did reasonably well until the last few weeks of treatment but developed severe mucositis and the mucous is still coming. Another problem was that his fentanyl patch was doubled over the course of a couple of days and he had a terrible reaction- hallucinations, confusion, etc. and was hospitalized (he is now down to 12mg patch). For about the past 6 weeks he had so little affect and could not interact much with me so it was such a loss and so scary. It is finally better this past wekk but now he is very frustrated with what he sees as his lack of progress, has lots of mucous still, can't eat much of anything that's not liquidy, and wants the thermostat set on 78 most of the time because he's cold. He doesn't seem to always realize that his mouth is full of mucous and then seems to get an almost unmanageable urge to just spit it out (hence at times spitting everywhere but in a his plastic spit dish or via his suction machine). He really wants me to assist with, or do, his tube feedings and I do crush up his meds and inject them in his peg tube. I am working full-time (much of it from home) but am really getting exhausted and overwhelmed- in large part because I have really been almost exclusively involved in his caretaking (most days driving over an hour each day for treatment and appointments) for 5 months. Friends have been great about bringing food and offering to drive some but his mucous, bad reaction to the fentanyl etc. were pretty much beyond what friends could manage these past 6-7 weeks.

We both need some reassurance that this awful mucositis should get better fast. I'm concerned that he is just basically spitting out almost anything that goes in his mouth because it hurts and he feels as if there's an obstacle at the back of his throat and wonder how others have gotten past this? Also, did others experience the turning up the thermostat issue and how did you cope with it? I have tried having him wear a hat, thick socks, etc but I'm practically ill from the stuffy heat. I have so much admiration for the caregivers on this board. It is so darned hard because you have to be so available, so on top of everything, and convey hopefulness and patience. I've done well but sometimes I'm concerned that I can't hold up much longer.

Sophie H.

Dear Sophie
If you read many of my old posts from March onwards you will see Rob and i nearly came to blows over the central heating lol.
Bearing in mind it was spring/summer when he was getting his treatment.

I moved out of the marital bed and into the spare room because i couldn't sleep in the heat he seemed to need all the time,and during the day i walked around in sleevless vests and cotton slacks.
It was unbearable and i thought i would suffocate.Every time i opened a window or door he went nuts,and because of the lack of air in the flat the smell of that damned mucous permeated every where.As well as the heating being on he had a blanket as well,boy was this subject a major issue.

The mucous was a nightmare and when he needed to clear it out, it went everywhere because he had to cough so violently.As a nurse, mucous was something i could never handle well,so this constant expectorating while very tiring and distressful to him ,had me in dry heaves many times.

Others here will tell you the likely duration of the mucous problem although i can tell you at just three weeks out,it will be just about peaking now.As for the coldness i think a lot of it was due to the extreme weight loss Robin suffered as he had no protective layer of fat to retain his body heat,and of course calorie intake produces heat and he didnt eat from February.

As for the rest i am sorry to say it is par for the course sophie,and i admire your stamina and the fact you have been able to hold down any sort of job let alone a full time one.

Some how we keep going ,i survived on three hours sleep for months,and only now since i lost Robin has my body given up on me and i seem to be catching colds at the drop of a hat,and have had a serious chest infection,and my latest cold is heading that way again.

This may sound a very self pitying thing to say sophie,but despite all the exhaustion and frustration,i would rather be in your shoes than mine now, so hang in ther honey,it will get better slowly but surely,and it will be worth it.

love liz

Sophie,

The radiation has probably affected his thyroid and other areas. Turning up the thermostat is normal, at least it was for me. I could not get warm enough. HOWEVER, my mucositis lasted for close to 4 months. I could only take small amounts of water through my mouth. I tolerated my morphine, fentynal, and other pain meds better, but: (and I'm not trying to be mean) YOUR HUSBAND HAS TO GET HOLD OF HIMSELF AND HELP WITH HIS TREATMENT!

He will get better if he stays positive and active. We all react differently, and I am not trying to be negative, but you cannot do it all. He must participate in his treatment and recovery and you must make him.

They wanted to show my wife how to feed me with my tube. Why should she have to do that, I could stand, open a bottle of Boost, and pour it into a funnel.

He needs to be a little more self sufficient, and you need to not baby him as much.

Sorry, for my rant, BUT HE NEEDS TO FIGHT!

Steve and Liz,

Thanks for your comments. My husband was pretty self-sufficient re/ feeding most of the way through the treatment(except he couldn't drive due to narcotics and distance). But you're right- he has to get a hold of this to a greater extent for his own recovery and for our relaitonship. I have made strides in doing less and so that he will do more each day but he is nowhere near his old self.

Steve, did you get better re/ being cold? I know that lots of people get thyroid problems months or even years after treatment but I haven't seen people post much about that. Do you take meds for that or did it resolve?

Thanks so much for responding- Sophie

Sophie,

Sorry to hear things are going a little ruff. As far as the thick mucus, I would wash mouth out with warm water mixed with salt & soda. It helps cut it. Also keep eye out for mouth thrush.

Most of us that had radiation lost the thyroid. I was 4 months out and found out Thyroid was not working. Now on Medication for it for life.

Even though your husband has feeding tube, please make sure he swallows water everyday to help keep his throat open.

After the saliva glands stop over working, he will get dry mouth. Then you will need other products to help with that. Most of us here use the biotene products. Oral Balance for dry mouth.

Take care of your self as well. You need to rest when you can. Take a nap when your husband is sleeping.

Things will slowly get better. Hang in there. Tell your Dr. of any problems or concerns you may have. Do not be afraid to ask questions.

Take care,
Diane

Hey, Sophie, I'm catching up here [have been nursing sick grandkids for a week]. #1. If the mucous is still a problem, get a suction machine- if you Doc won't prescribe one, I wil send you one to use until no longer needed. It will help!!. #2. If your hubby is not running a temp., rub his feet with a good lotion and have him wear socks, give him an electric blanket, put a t-shirt on or pjs and get him warm. You go sleep in another room ![ My John was cold all the time during treatment- summer and winter] We had an awful experience with fentanyl and quit it all together. What you all are going through now is a trial and error deal. His body will respond differently than someone's else's, but the side effects are pretty much the same- the problem is how to handle them on an individual basis. And as the caregiver, you ae going to be at your wits end Hang in there, Sophie, this is not easy. And please let me know if you want the "traveling suction machine". Amy in the Ozarks

Hi Sophie - it's a while since John finished treatment but I remember very clearly that it somehow seemed almost too much to handle a month or so after treatments ended. The huge amounts of mucous seemed to get worse - if that is possible. I, too, was exhausted and more on edge - there's limit to what is humanly possible as a care giver.

I think John also became very depressed when the daily treatments were finished and we had to wait a few months to have the tests to find out how effective the treatment had been. As others have said, better to be doing something that you hope will help than any of the waiting stuff.

The mucous did gradually get better. You are at a very difficult point right now but, soon, there will some small improvements and even a tiny change for the better can really lift your spirts. For me, it was when, after being fed by the electric pump for many days at the end of treatment and afterwards, he said he'd like to try just having a regular feeding through a hanging bag. Oh joy of joys!

Hope you're able to have some help come in - even if it's just so you can sleep for a few hours in the day. Being sleep deprived can make it all feel worse. There may a friend or relative who can handle the mucous bit. Not everyone is easily put off and some people really, really want to help.

Mary

Sophie:

I know this is a rough time, but it really does get better. I completed my chemo and tx on Sept 27. Mine treatment was for 8 weeks. After 2 hospital stays post-treatment for dehydration, I can now say I am good.

The mocous hung around for about 5 weeks for me. Remember everybody is different. Then came the dry mouth, which is annoying but nothing compared to the mucous.

I also have a PEG tube. Everything goes in there, medicines and liquid nutrition. I do the overnight feedings.

I do get cold easily, but my thermostat is set at 67. I wear a long sleeve turtleneck under my sweatshirt.

Im sure you could use a good rest. I feel very bad that you are going thru this right now. Hang in there.

Your husband needs to take responsibility for his recovery. I got thru this with pretty much no caregiver. Do you have a visiting nurse? I had one come once a week and she was wonderful. I had to depend on my teenage son to drive me to treatments. But, other than that I had no help. I did my own medications, feedings, everything.

Does your husband seem depressed? This is very common after treatments. I do remember the first 3 weeks after treatments were the worst. I pretty much stayed in bed most of the time.

Hi Sophie,
My last radiation treatment was 9/17/07. My last chemo was 9/10/07. I had 35 rads and 7 chemos. I now have dry mouth and although it is irritating it is nothing compared to the mucus weeks. But as others have said, it will pass and from what I have read it is different for all of us. I used a product called

Sophie,

Sorry to be responding so late, and hopefully most of your husband's problems have sorted themselves out by now. Just thought I would drop in with my 2 cents worth, since I had similar Dx and treatment.

I never had the mucous problems (thankfully), but I certainly did have the feeling cold bit. As has been already noted in the thread, the thyroid gland is suspect. At the very least, have your PCP or MO run a thyroid panel the next time they draw blood. If he is hypothyroid, it is easily treatable with a daily pill (very small, thus easy to swallow). In my case, the doc put me on minimum dosage of Levothyroxine for 5 weeks, and after that I tested and felt fine. I guess my thyroid just needed a jump start. I'm told it may recur at some point in the future, but I'm not going to worry about "what if" or "maybe" scenarios.

Hang in there. Things will improve.

-Bob