I'll complete radiation on Monday, June 22nd. I've been told that things(?) will get worse for the following 2-3 weeks, before you start to feel better.

I've done very well so far: no need for pain medication, didn't lose weight. My main problem is a sunburn neck and a sore tongue, however I don't have any taste buds or appetite.

Could some of you share your after treatment experiences with me. I don't expect the worse, but it helps to be prepared.

Thanks
Sandyst

Sandy

In your case, the "worst" may never even happen. I say that because while it is true that the full effects of radiation don't peak until TX is over, they tend to be amplifications of what has gone before. I admit to being one of the skeptical ones in reading your posts, but if you have not had to take any pain pills at all, then you must be doing well. For me, the dry mouth got even more arid, the mucous thicker, the sores more plentiful and painful, the nausea and fatigue greater. But they had been happening all along - it was more a matter of degree. I had to escalate my pain meds also.
what could suddenly go bad if you don't watch it is your "sunburned neck"- keep close tabs on it. There are specific creams and lotions for radiation burns that can be prescribed.
Taste and appetite sink to new lows for most everybody.
So it sounds like you are doing great and there is no mandatory requirement that everyone has to sink to new lows, it just happens to most. Wishing you the best of success and that you sail through this as unscathed as possible.
charm

Things started to go south for me in my 5th week of rad right after my second Cisplatin dose. It got worse each week and by far the worst part was the 2 weeks post Tx but then I woke up one morning in my 3rd week post Tx and I just knew I was over the worse and I called it like walking out of my dark tunnel that I had been in for the last 5 weeks. Even after that I still had some bad days mixed in with some good days and eventually the good days out numbered the bad ones until the bad days finally went bye bye for good.

Thank you both for the info.
Having knowledge of what to expect in the coming weeks will help me not to become angry and frustrated that recovery isn't going fast enough. I plan to accept what each day presents, and be positive about the tomorrows.

Thanks again. I'm being extremely careful with my neck as I want it to heal ASAP (at least the one extremely sore patch). Of all the side effects, this is the least tolerable.

Sandyst

Sandy,
I kept waiting for the worst. It never came. I had a hard time with the chemo. They couldn't control my nausea. As soon as it was decided I couldn't take anymore-I only recieved 6 weeks of cisplatin-I started getting better. I still had almost 3 weeks of radiation to complete. I was eating small amounts of food with in about 3 weeks post tx. I guess it was around that time I realized the worst for me had already past.
My neck didn't even get that bad. It was discolored, and like a sunburn temp. changes were horrible and I peeled. I did not blister and I couldn't even strech what I had out and call it a burn.
I hope your worst has also already come and gone
Amy

Hi Sandy, the two - three weeks post Rads were the worst for me. Then you should begin to notice some subtle improvements. It's not going to be like turning on a switch rather like slowing turning on a light bulb with a dimmer. It just takes time for most!

Kevin

Hi SandySt,

My Hubby went through the same treatment as you're going through, although he also, had the RND two months after. He did not suffer any horrible side effects after tx...just extreme fatigue. Most importantly, get that nutrition in any way you can. Hubby was instructed to get in 2800-3000 cal/day, which can be almost impossible, but you got to do what you got to do! Drink ensure plus, puree foods, experiment with as many things as you can get your hands on...Beef and pork has the most protein for the ounce, poultry is next and then, fish. Get those veges in and fruits if you can, and healing will take place in its own timely way. Good luck!

Sandy,
I think the neck burn was also my biggest problem.

Fortunately I didn't have any open wounds from it and as long as I didn't touch it, it didn't hurt.

I tried different lotions, but that messy aquafor seemed to work the best for me.

Post Tx, after a couple weeks, the burn wasn't much of a problem for me, but it took quite a while for it all to fully heal and peel.

Seem like most of us who get Tomotherapy report having a somewhat easier time getting through this.

A couple doctors have told me they find chemo-radiation patients have more throat constriction issues during and following Tx. So that might be something to keep tabs on.

A Kaiser-Permanente swallowing therapist has been working with us at our monthly H&N support group meeting (for patients from all the area CCC's). It is real interested even for those of us who don't have significant issues since it seems we all have some degree of throat constriction.

As we all say, everyone can be different...I had the chemo rad but never had any throat constriction problems. I didn't have a Peg and was "forced" to swallow throughout so that MAY have helped.

Everyone has had such different experiences, Sandy, it seems like there's no telling about your own. I had months of chemo before transitioning to a radiation/chemo protocol. I tolerated the chemo extremely well, with only modest need for nausea control. (Zofran worked like magic.) By contrast, radiation was extremely harsh. Aside from extreme soreness in mouth and throat, and mouth sores, I've had extreme saliva thickening and, as a consequence, sleep deprivation: I have not had an hour's continuous sleep for over a month. Further, I had fairly severe neck burns from radiation -- but remarkably, this was the first side effect to recover. I completed radiation just two weeks ago and my skin (which had looked like hamburger) has largely healed -- this while other effects (soreness, saliva) continue as strong or stronger than ever. Go figure.