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?