OK. Today it is three weeks since I graduated from radiation therapy. I didn't expect chnage for the better immediately, whch is a good thing because the Sunday after I graduated I was running a high fever and, since I was neutropenic (or so I thought--it turned out technically my WBC was a litte higher than the cut off for neuropenia but the oncology nurse had told me I was the Friday before), I ended up in the hospital.

They immedistely put me on IV antibiotics, which was good, and the nurses were great about being sure I had adequate pain meds and that I was being treated for constipation (a couple of things I ahd not been staying on top off adequately at home it turned out). The doc said I had "cellulitis" because my neck was very swollen and the radiation burn was at its worst when I was admitted. They prescribed a burn cream that worked like magic--helped the dead skin peel off the neck within and couple of days and the neck sweeling went down somehwat (but not the cheek swelling--which has also been pretty noticable since the 4th or 5th week of rad.) I was kept in the hospital for nine days while they waited for any other bacterial infections to emerge from the cultures that needed to be treated (nothing did). It was so long because even with the anitbiotics, there was no sudden improvement in my health, just the fever gradually lowered over time until, after nine days, when it wasn't going over 101, at which point I was released. I had heard from a nurse that there were a couple of antibiotic -resistant diseases on the floor and I was glad to be released-even with a low fever still--since I didn;t want to take one of those home!

Since then, some things have improved over what they were when I graduated radiation. I have had another blood test and my white blood cell count has gone up to what my RO told me was "the low range of normal", so that was good news. The most distinct improvement was that I got my voice back which is *really* great (I was tired of having to write notes or whisper soundlessly), though I am still kind of low-voiced and throaty sounding.

BUT I am still spitting and in some cases heaving up all sorts of phlegm in my mouth. It is not quite as stringy as it was, usually, but it is often still a funny color (yellow) and it is abundant enough at some times during the day (and I can't predict when) that I feel like it's keeping me homebound at this point. Even though my blood ell count is OK, I can't go out anywhere public without risking sudden phlegm-stuck-in throat induced puking or lots of spitting (which I can't do wihtout making soem noise) into Puffs Plus as other people give me the evil eye and move away.

Also, the mucositis hasn't chnaged at all. I still have the same sores and lumps and bumps in my mouth. And, I guess because of that, the mouth pain is the same as or worse as it was when I ended rad 3 weeks ago.

But the thing that realy has me frustrated is the phlegm. I am SO sick of spitting all the time and also gagging on the really thick stuff that sometimes gets stuck in the back of my throat. I thought after thre weks most people didn't have phelgm probelms anymore? My sweet husband has suggested that maybe it is bad because the ending of it was kind of delayed by the infection that put me in the hospital. When should I be concerned about ti still being a problem?

I guess I just need some encouragement. I'm not feeling like very much has changed in three weeks. But I guess that could be because I was battling further infection most of that time. I think if the phlegm would go away, or mostly go away, I would feel like I was really on the mend.

Hang in there Nelie - you are right at the turning point. Progress is measured in three week increments early on. Try to have patience. The thick mucositis stuff usually just stops several week post Tx. It's been said many times here that "radiation is the gift that keeps on giving". The effects of it typically continue for three weeks post Tx (and that even can mean it can get worse), so nothing much changes during the first three weeks.

Most of us have been there - it really wears you sometimes doesn't it?

Actually you should be home bound as your immune system is pretty thrashed. You are taking a risk going out to public places right now. It was almost 2 years until my blood chemistry got back into normal ranges. Talk to your oncologist about going out in public and when it is safe for you to do so.

You'll start to get better I promise.

OK. I'm sorry to move this to the top again but it's two weeks later, FIVE weeks since the end of rad (over a month) and I STILL have a ton of phlegm I am spitting out. When does this become abnormal? I have been patienty wiating for it to just disappear as others have said it would, and I wil say it seems to have lessened in volume on most days but it has definitelyu NOT disappeared.

My ENT last week suggested I take Mucinex (Guaifenisin) to thin the phlegm somewhat so I don't gag and get the heaves on a daily basis (which was what was happening) and that does appear to have thinned it somewheat so that I am able to swallow it sometimes but then when enough of it gets in my stomach I get nausea and vomit from that!

I also still have lots of painful mouth sores and am not ingesting much through my mouth except green tea iced tea but even that is hard because when I swallow it, I swallow phlegm and then, again, there's phlegm in my syomach that builds up to the point it makes me sick.

Some days are better and some are worse and I'm writing this after a bad period--I have vomited from phlegm 4 times in the last day and 1/2. Before that I had about a day and 1/2 with no vomiting (though lots of pitting of course) But I just want to know if there's anything else I can do to get rid of this or if it is becoming a sign of something abnormal.

I also am taking salagen to increase my saliva and I haven't really noticed that helping or hurting the phlegm, though I did stop taking it yesterday for 24 hours when I seemed to be having more phlegm. It didn't make much difference.

I'm also taking a magic mouthwash mix, which stings the mouth sores , but has nystatin to control thrush. Sometimes the phlegm is yellow, sometimes clear, sometimes brownish (I think that might be from the iced tea). Does color make a difference?

Nelie
Oh boy that brings back memories of just a few weeks ago for me. I had my last RAD tx done on may 15th and thought by a month later io should be eating and feeling better but my body had other ideas for me. But I think you will see a diffrence in the next week or 2 which will help.
Reading your post was like reliving it for again for me, what a terrible time and hard to just be patient like everyone says to do. The musinex did help some for me and just spit, spit, spit. But this will soon pass and you are on the doorstep so dont give up :-)
Bob Grey

THANKS for that post Bob. You're about three weeks ahead of me so I will keep hoping! It's just a relief to know I'm not the only one going for this long without much relief.

Nelie, it will get better. Your end of the tunnel was probably delayed due to the infection you had to fight off. I too, had a hard time dealing with the phlegm and ended up vomiting when I had to cough that stuff up. Suddenly it just started easing up and it was like the dark cloud lifted. The dark cloud will lift for you too and it's just around the corner.

Even now that I'm several months out now from radiation ending in March, I will occasionally cough up a small ball of crud. I'll either cough it up or my nose will start running and I'll blow it out. Gross as that sounds, it is a small reminder that those days really aren't so far behind me.

Keep your spirits up as much as you can. I felt like I was at my lowest point after treatment ended and I was dealing with weeks of being "on the ropes"

Jen

Nelie, John is also struggling with the phlegm monster. I had read posts here that some folks used suction machines. I rented one for John last week and he says it helps alot. Amy

Nelie,

My husband also has alot of phlegm and we rented a portable suction machine to suck out the phlegm on regular basis. ( very similar to the one at your dentist but smaller and very efficient) It was a nifty little machine and our insurance paid for it's rental. Your doctor can prescribe one from a medical supply company that they work with. Believe me, they have a company that they work with. I am amazed that more people aren't using one. It was such a relief for David to use. It was easy to clean too.

The one we used was named a Yankuer, and it certainly did.
Yanked that yucky stuff right outa there!
Hope you get some relief soon.

Marica

Nelie, My husband didn't seem to have the phlegm problem - at least he never complained much about it and as far as I know, he's only vomited once through all this. He's about 3 weeks ahead of you. The cancer center treating him has an Integrative Care department and he's been using the acupuncturist to treat him for nausea, pain, and anxiety. So, maybe that has made the difference. Who knows? He still has the non-healing mouth sore (won't get biopsy results until next Mon/Tue, as surgeon went on vacation) and his neck is still swollen from neck dissection. I thought he would be able to eat soft foods again weeks ago, but it is 9 weeks out now from radiation and the mouth sore and swelling seems to be holding him back from that. He can only drink protein shakes and eat diced peaches. If the biopsy comes back negative, he'll get the hyperbaric oxygen treatment for the mouth sore thats not healing. But doesn't massage help out the neck swelling? They've talked to him about that before but said he needed more time after radiation to start that. So for now, he's not making any progress to speak of, just waiting for the surgeon to get back next week. Are you able to eat yet?

Hello all,
Reading these posts brought so many memories back. At times I thougtht I was the only one experiencing such problems. I wish I knew about this website earlier. Nellie, I know us telling you it will get better more than likely increases your frustration but don't let it. I had to take antibiotics because my mucous was green and so stringy and I had to tell the docs to give me antibiotics because it smelled horrible and was so stringy and the antibioitic cured that part up. Sorry folks I know that's disgusting. But it remained thick for a long time afterwards and then one day it was like it was gone. Take them puffs with you and spit and drink plenty of H2O.
Mary

I just came back to this topic and realized I never read the last couple of posts other people put here. I want to thank everyone for their en couragement. It turns out that now, 6 weeks out, the phlegm has let up a LOT, though I still do some spitting everyday and every now and then have a few hours when its as bad as it used to be.

My problem now is my tongue is SO sore in spots that I can't seem to find anythong to eat that doesn't make it hurt really badly. I actually can't even drink regular water without it styinging really badly. As I think I mentioned before, I have found iced tea works without hurting too much but I think the tea is staining my teeth really badly (especially since the enamel on them is probably poor after the radiation) and I'm worrying about drinking nothing but that.

The whole bottom left side of my tongue is very red and irrirtated looking, and actually has been forever--since before radiation even--but back then even though it looked red and irritated, it wasn't so pain sensitive. Now, it just stings like crazy when I try to drink water or even (today) eat something creamy like some leted ice cream ( melted because I heard somehting too cold could hurt). Menahwile, after a long period of never really feeling hungry, I am beginning to have real sensations of hunger again but NOT for another can of Jevity but for some kind of "real" food. I bought a few cream soups today and I'm ging to try those. The other thing that doesn't bother my mouth is the good old saline solution so maybe a soup with a little more salt in it will do the trick.

Can anyone tell me what you found you could eat or drink early on when lots of things still hurt? I'd be very curious.

Nelie,

I had the same kinds of pain and stinging from the latter stages of radiation and for several more weeks (I distinctly remember that I couldn't even drink water without first using the topical anesthetic "swish and spit" stuff that the nurses kept me supplied with). My diet at that point consisted of lots of baby food, applesauce, blender concoctions that were variations on the high-calorie shakes that you see elsewhere on this site (usually with fruit thrown in), overcooked pasta in creamy sauces, and melted ice cream.

With the swish and spit mixture that I had, I knew that I could get about 10-15 minutes of numbness on my tongue before it started to wear off, so my goal was simply to shovel in as many calories as I could get to slide down in that time.

I hope you'll start to see some lessening of the pain soon -- I think you're getting close to the stage where I was seeing improvement in the eating department.

Cathy

You know, Isoemtimes kind of wish I had toughed it out without the PEG tube, because I wouldn't have this battle to get back to eating real food. Although I can see why the folks at Dana Fraber said the required a PEG for their patients who were doing chemo and rad. One of the artciles they gave me on the effectiveness of chemo and rad looked at severity of side effects and the one most likely to increase in severity (from rad alone) was mucositis and it increased often to the point where the patients couldn't eat or swallow. I never stopped swallowing --I made myself sip water once in a while even when it stung--but I don't swallow unconsciously anymore, except when I'm sleeping. I think this is part of the reason I'm spitting so much is I have to consciously tell myself "OK, try swallowing that spit in your mouth" these days. It isn't surprising really because there is a very sore patch on my throat as well the the sore spots on my tongue.

I hope the pain lessens soon too. I can see from looking in my mouth and feeling around with my finger that some of the mouth sores are shrinking in size. It would also hwelp me not worry about the possibility of having a recurrence already if the pain lessened a little.

I forgot to say that I tried cream of celery soup this morning (that was about as bland as I could find) and it went down fine but it was wierd not being able taste much of anything. I can actually taste the tea when I drink it but I may only be able to eat soups that kind of taste like fatty puddles of liquid with no distinct flavor. After a few spoonfuls it started to seem like the jevity through the tube was easier than trying to make myself eat it.

Nelie, don't be sorry about the peg. It could save your life. I know it is all that is keeping John alive at this point.[10 days after the last rad. tx and I don't se him being able to take anything by mouth for a while yet] Hang in there. Amy

Nellie, Amy is right about the PEG. My mouth was so sore I could not hold a thermometer in it, so the PEG was truly a lifeline. About taste, salt comes back first, and sweet last. I ate lots and lots of chicken noodle soup because it has an obscene amount of sodium in it, and I could taste it. When the sweet began to return, I would take one bite and taste normally, and the next would be nothing. I was not until then a particularly patient person, but I learned.

Truly, in a few weeks you will be so much better.

BTW, I, too, finished tx and instead of the planned fishing trip, ended up in the hospital in the same condition you were. Not what we planned, was it? (grin).

Definitely not what we'd planned, Joanna! :rolleyes:

As for the thermometer thing, for some reason at my medical oncologist's iffice, the under tongue thermometers are all they have (whereas at the hosptial, the ear ones are all they have) and by the end of my daily visits to the oncology nurses before rad for the Amifostine shot, they knew better than to even try taking my temp. We have an ear one at home--thank God for them!

I was overweight by about 40-50 pounds right before I was diagnosed with tongue cancer (even with tongue pain I managed to overeat over Christmas ) and I have lost 45 pounds since then so am now at the top range of normal weight (back to where I was during my 30s and early 40s before I got together with my sweet and pasta-loving husband). So even without the PEG I probably wouldn't have had to worry about becoming too thin. But I know I would have gotten more dehydrated without it and that would have been bad so I can see why they require it.

Joanna, I assume you also had chemo and rad both since you ended up in the hosptial in a similar state to mine. How long after rad before you were able to eat or drink things without too much pain?

I taste salt sometimes. I also seem to taste some fruit flavors. I got some boittled iced white tea with honeydew juice in it and I swear I can taste the honeydew (at lest on the first sip) and today I made some iced pear-flavpred white tea (a new Celestial Saesonings flavor) and it seemed like I could taste the pear a little.

Nelie,
When I had the phlegm issue, I remember that anything with a high fat content added to my discomfort. Citrical, the calorie/vitamen drink I took, burned but helped with the phlegm greatly.

Also, I found that writing in a journal as i was healing from radiation helped me to put my life in perspective and got me back on the right track. I look back now (7 years) and can't believe what a short amount of time it really took from enjoying my life.

Do something everyday to bring you joy.
Eva

Thanks for that perspective and encouragement Eva! Yes, it's ironic that what goes down easiest (creamy stuff like cream soups) is probably bad for the phlegm, Which is why I'm pretty much back nto just putting Jevity and juices through the tube in the last couple of days.

Hi Nellie,
I finished my radiation July of 03 and Thanksgiving of 03 I was still having big issues eating. It's slow but the improvement is steady. Eating will never be the exact way it used to be but it does get back to being enjoyable.
Minnie

So you had the ethyol shots and you're still having that problem Nellie? That sucks and doesn't speak well of the Ethyol (isn't that part of it's intended effect)?

My radiation nurse recommended 2 tablespoons of glutamine powder, 2-3 times a day which I believe is for that side effect.

The glutamine is supposed to be good for mucositis -- but it isn't particularly well-absorbed by the body. There's a drug in clinical trial (Aesgen) that is really L-glutamine in a novel delivery material that increases absorption 100x, and this apparently is great for reducing mucositis. Of course, as with the other promising drug, benzydamine, it is not yet through clinical trials in USA. Arghh!

Nevertheless I have seen some papers recommending about 2 g l-glutamine in warm water or saline used as a mouthwash 2-3x a day to help with mouth sores. It isn't stable in water, you have to make up fresh each time.

We are going to try it...

Gail
(Barry Cooper's wife)

xynobix, I had ethyol most of the time I was having treatment but there was one week (5 days)I went off it because the second chemo was already giving me so much nausea, I couldn't see adding more and neither could the chemo nurses). The last week and 1/2 I was doing one day on/one day off of ethyol.

But I had most of the mucositic spots and sores that I still have in my mouth already by that time. I mainly did Amifostine to eventually be able to have some saliva. I think it's effect on helping mucositis is not so clear in the research. Right now I can't say I notice much of an effect on saliva either, I came here to whine about that actually, but my rad oncologist has told me it doesn't necessarilly come back right away--that I need to give it longer (so far that seems to be his answer to everything).

do you jusy buy l-glutamin in the vitamin section? Does it help prevent sores or also help heal them?

Hi --

The l-glutamine paper I found is a review posted on

www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/lgl_0125.shtml

It has a number of citations which I have not yet looked up which describe benefits against stomatitis/mucositis.

However, the summary info in the review says:
"In a recent placebo-controlled study, oral glutamine significantly decreased the severity and duration of painful mucositis (stomatitis) in autologous bone-marrow transplantation patients. It was similarly helpful in alleviating radiation-induced oral mucositis in a recent randomized pilot trial." Later the paper says, "Those with chemotherapy- or radiation-induced stomatitis have taken doses of 2 to 4 grams twice daily or 2 grams four times daily. This was done by dissolving a given amount of l-glutamine in water or normal saline - one gram dissolves in 20.8 ml. of water at 30 degrees Celsius -- and using it a a swish and swallow." I would make sure your nurses know you are doing this but personally cannot see that it can hurt. If you are concerned about ingesting it, I guess just swish and spit.

Reading the rest of the paper, it appears that people under metabolic stress and not taking in a normal diet are often deficient in this important amino acid.

A google on Aesgen has quite a bit on this new drug, and how l-glutamine acts against mucositis.

Gail

Thank you Gail. Very helpful information!