Hello all,
The good news is that John is done with treatment (except for a possible study to reduce recurrence w/ retin A)...The bad news is that he feels aweful. Until this week he really did well. Now he can't seem to put it into words, but feels terrible...the most overwhelming specific thing is the mucous especially with the trach (he is on Tussinex and Guaneffasin) and he has a fever so he was started on antibiotics...but it alos seems to me that he is generally feeling horrible......did this happen to anyone else and do you have any tips???
Thanks so much for you support..oh, by the way we haven't we have had any more "snack pack moments"...but we joke about it a lot....
Take care,
Sara

Hi Sara,
It's not really bad news - it's pretty normal to feel like crap when you're done with treatment. Most of us did. The following several weeks post Tx, for me, were the worst part of it. The thick mucous will eventually stop - for most of us pretty suddenly around 3 weeks. The treatment really kicks your ass.

I also had anemia and low WBC which totally screwed up my sensation of hot and cold. One minute I was freezing and the next burning up. I sat there with a pile of blankets in one hand and the remote control to the ceiling fan with the other. That'll pass too. The red blood cells replace themselves every 120 days.

The best advice I can give you is get plenty of rest, manage your energy carefully, watch for infections, thrush (especially since he's taking antibiotics), and stay on top of nutrition and water intake (2-3 liters/day).

Hey -but you're DONE with the mask already -that's a good thing. Completing treatment is great as well. Congratulations! Hang in there -it'll get better.

Hey Sara,
I so agree with Gary. Dan felt worse for at least two weeks post treatment and really didn't start feeling much better that whole month. However, now he is 3.5 months post treatment and feeling much better; PEG tube came out about 3 weeks ago. He still has really no taste yet, but trying to eat enough to survive and not lose more weight. Life does get better and I just praise God for how much better he is now than even last month and believe me, it's like almost 100% better than end of treatment and weeks after!

Take care and God bless,
Debbie

Thanks Gary and Debbie, YOur word were a great help for John...he was even interested in the guys only topic...he is a toughie as are you all!
Thanks and lol,
Sara

I am 5 months out from radiation and just now am feeling more like myself. I have a little different situation, but I don't think it's uncommon at all to feel poorly even months after Tx. Plenty of rest, lots of water, I think we all know the drill, but above all be patient with yourself, John. It will take months rather than weeks.

I am six weeks out of treatment and I too experienced my worst days two weeks out, However, six weeks out I am still not on solid food (Peg tube only).

Sara,
Yes!! Done!! What a good feeling! I know, the first two to three weeks after is the worst, but John is done! Hoorah! All he can do is hang in there. It does get better and when it does it gets to be very good. I am 5 months out of rad and while not back to what was "normal", I can't believe how much better than those first two to three weeks after. I eat all foods now, my peg is due out 7/12, and I feel and look so much better I can't believe it. There are still issues but they are minor compared to just after rad. So look forward to watching the improvements happen and regaining all of the things you used to have, or as many as possible, anyhow.

I remember the first few days after I finished treatment. I was mad because I felt worse!! Then I saw my doc again and he prescribe some stronger meds that helped me turn the corner quickly.

Of course, there were some very strong pain meds -- morphine, pain patches, etc. (watch out for constipation!!).

But the thing that really helped me was some kind of steroid they gave me (can't remember the name off hand). LIterally within a day or two, a lot of my mucous problems cleared up to where I could sleep through the night rather well, whereas before I was getting up every hour or two and gagging on all my junk... You might want to ask about that kind of steroid...

Don't forget to celebrate like heck because it's only going to get better in the weeks ahead after this last little dip...