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.