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Mucositis won't go away after treatment

Artray
Posts: 24
Joined: May 2009

I am writing as my husbands advocate (again and still!).
He was diagnosed with scc last Sept and started 7 wks radiation and 3 chemo treatments that finished on 2/22 (yeah!). The dr's insisted on a j-peg before he started which has been a real blessing throughout as he's suffered a huge case of mucositis which the dr's seemed unprepared to deal with and we haven't seen any mention of this on the boards.
During the treatment and for about 6 wks after it was a tremendous problem and he still must sleep sitting upright to avoid chocking and although it has subsided alot it's still a big problem.
Any one out there experience this at all?

He is now 13 wks past treatment and although the PET scan showed the scc on the base of the tongue was gone, there was still some 'lit' areas in the lymph node and around the neck...we go to the ENT this week (3 weeks since the PET scan) to find out what the next step is or if he's still healing.

Although he has been able to eat a little bit, a few meals here and there, then the mucous starts flowing and his throat gets so sore he just goes back to the tube to get some relief and not exacerbate the problem any more!

Any help would be appreciated alot...

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Artray, congratulations to your husband for getting through the treatments, and a hearty salute to you for being the loving caregiver that continues to seek answers for him! I believe your job may be harder than his, frankly.

Regarding the mucous, which I will address momentarily, be advised that your husband is not alone.

I am a squamous cell carcinoma survivor, having had half of my tongue replaced with stuff from my arm, followed by the same sort of regimen your husband apparently experienced: seven weeks of radiation along with a number of chemotherapy treatments (cisplatin in my case).

My surgery was in October of '05, followed virtually immediately by the rads and chemo, which lasted well into January of '06.

Let me begin by saying, in all honesty, that I would be quite concerned about the 'lit areas'. I had the surgery in an attempt to avoid that possibility, and when I had the surgery, they took out not only half of my tongue but some lymph nodes in my neck, where they also found some positive activity.

Perhaps, with all of this time gone by, they are more confident about the positive effects of the chemo and rads. In '05 - '06, frankly, these treatments, in my case, were dedicated to removing any strays missed by the surgery.

That said, I know that every case is different, and I am hopeful that your husband's doctors are much more intelligent about this situation than I am.

(I would not get overly worried, Artray, but I WOULD follow up on this, as I am sure you will. It is true, and I am someone who knows firsthand, that 'lit areas' can be false positives.)

As for the mucous build up, yes, it is quite natural, and yes, it tends to ease up as time goes by, at least in my experience.

During my treatment and for some time afterward, I could pretty much set the clock by the times I woke to go to the bathroom to eject the stuff. Every two hours in my case.

Four years later, it is still there, but not with such severity.

And, this is after the fact, but I took on two shots of Amifostine (sp?) prior to each day's rad treatments in the hopes of saving my saliva glands. This treatment was not exactly endorsed by my doctors, but was offered, and I took it. (The medical profession, at least at that time, was ambivalent about its positive effects in this regard.)

I do have saliva action, for what it's worth.

Getting to the root of your husband's problem (and, thus, yours) I advise a rigorous oral hygiene regimen, using toothpaste and mouthwaste specially designed to reduce/eliminate dry mouth. I advise carrying a bottle of water everywhere and drinking lots of water with meals (my OncoMan has advised that seltzer water is better even than water, and that sports drinks can actually lead to leeching of certain important vitams/elements, by the way).

I started out trying the recommended lemon drops for getting saliva to flow, but frankly, they were too tart, and I feared swallowing them and choking to death :). I switched to TicTacs, even though others have rightly reminded me that they are not good for your teeth. I now use Altoids, and I am sure my friends will say the same regarding the sugar content, but they help me moisturize my mouth while also sweetening my otherwise death-smelling breath, to be blunt about it.

I advise that your husband do his very best not to rely on the peg tube, although I still have one nearly four years later. It becomes like a crutch, and the worst effect is potential tightening of the jaw muscles from lack of use. That is not to say that he should get rid of it. I agree with you: it can be a blessing of sorts and should not be removed before its time. I am only saying that if your husband can eat, he should do his best to do so rather than cratering to the ease of the tube.

I would suggest perhaps cutting back on the normal sorts of meals and concentrating on nutrition-rich things that do not hurt his throat. Experiment with smoothies and yogurt and ice cream and broths and soups, things that are not spicy or 'edgy'. Meat, for example, can be an issue when you are starting to eat again.

For the phlegm (mucous) I simply went to the bathroom, gargled, and ejected it. Still do. I got used to getting up every two hours for a time, and that was fine. Eventually, and I am sorry I don't have a timetable for you, it dissipated. Again, it still occurs, but I do not wake in the night, and it is probably once or twice a day now.

I can live with that.

I wish your husband, you, and your family and friends, the very best, Artray. You have come to a good place, and I am sure that you will get a lot of good advice regarding this subject.

In the meantime, I WOULD approach the 'lit areas' and the sore throat with serious and determined intent.

Take care,

Joe

byzas
Posts: 9
Joined: May 2009

Hi Artray,
I'm happy to hear your husband finished his treatment. Hopefully the lit area will be benign.
I was diagnosed with scc of the left tonsil in January 2007. I had known people with various cancers but mostly breast cancer. I did not know anyone that had a feeding tube during their treatment. I knew that some patients had a port for their IV but that was the extent of it. So, I did not have a j-peg since no one recommended it to me and I didn't know to ask.
However I did suffer from mucositis terribly. Between the sores, the inflammation and the mucous it was horrible, I could barely even open my mouth. Eventually, I was unable to eat or even swallow water because I was producing so much mucous. I constantly spit into tissues and kept a pail next to my bed in case I couldn't make it to the bathroom.
Like your husband I felt it necessary to prop myself up at night. I would wake up choking all the time, during treatment I never got an entire nights sleep.
I read Joe's reply and I agree about your husband doing his best with oral hygiene. Rinsing with salt water helped me, and that is something he can do as often as he needs to. I also agree to encourage your husband to eat easy healthy things. My sister made a simple beef broth for me.
I ended up in the hospital because of dehydration and everyday they would bring ginger ale but nothing would go down so I didn't try. One day I felt like I was dying of thirst and I grabbed the ginger ale they had left for me and it went down. It burnt going down but I was able to swallow it. The carbonation got through. That is when I got the idea to mix plain seltzer and water and I was successful swallowing again. Only a few sips at first but then I was able to drink a glass at a time. I finished treatment April 20th, 2007 and do know I continued to have trouble with mucous into June, but I can't remember when it stopped. Like Joe, I keep water around all the time.
The recovery is a slow process, at least it was for me. Keep trying different things because as your husband heals he will be able to eat more variety again.
I wish you and your husband the very best, please ask anything, anytime you need to, and if I can't answer you someone on this board will be able to.
Linda

Artray
Posts: 24
Joined: May 2009

Joe and Linda,
Thank you so much for the info! Actually, my name is Jeani and my husband is Art and I signed him onto this board with hopes that he would get some support and info in his frustration and dealing with this situation so that he knows he is not alone!
Joe, I had to laugh out loud when you mentioned your 'death like breath' as it's a point of contention for us cuz I keep asking him to rinse and he says it won't matter!

He is sleeping pretty well thru the nite, we've replaced the 'bucket' for spitting with a cup and it's really noticeably cut down in the past 6-8 weeks but every day at some time he gets a coughing spell that really hits hard. The mucos is still there, sometimes thicker than others but less than before, for sure!

As for the eating, he did a few meals while we were on vacation last week but then his throat started bleeding and the mucos seems to swell when he thinks about eating so he swore off it for a few days...I'm offering the soft stuff like soup, eggs easy over, mashed potatoes, cottage cheese...

And for the saliva, that seems to be gone for now. He does have his taste buds but when the mucos subsides, the dry mouth sets in and then he's equally frustrated.

Anyways, we go see the dr's on Wed for the next step. I'll keep in mind your guidance on possible false positives and doing precautionary surgery. As I'm sure with all medical facilities, we're with the VA so even if they want to do something it takes 3 weeks for the next appt then 3 weeks for the results then 3 weeks for the next appt...I'll let you know what happens so you can tell me your thoughts as we progress!

Thanks again...,
Jeani (and Art)

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Jeani:

Good luck to Art and you with that next visit. DO be sure to mention the coughing episodes. SCC is famous for heading to two places, unfortunately: the lungs and the brain.

In fact, I mentioned to my family doctor more than a year after my tongue/neck cancer treatment that I still had a niggling cough, despite the fact I no longer smoked, and asked him why. He had me get another CAT scan, and lo and behold, they found cancer in my lungs (speaking of false positives, by the way, they originally 'found' cancer in both lungs and declared me 'terminal'...but it turned out to be mostly an infection, with but a small node in my lowest right lobe, which was removed via a lobectomy).

The point is, DO bring that up.

Best of wishes!

Take care,

Joe

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