My Mom asked me to post and ask what to expect post treatments for my Dad. Hopefully, he will only have about another week of rad/chemo. He is having a hard time right now, not being able to swallow, dry mouth, spitting up, nothing tastes good in his mouth, not getting enough in his PEG, depression...you name it. Mom just feels like she needs to be prepared. Its been so hard on her. Thanks everyone for always being so helpful!

Sorry to say but most likely the worst is yet to come for your dad. For the majority of us the 2 to 3 weeks POST Tx are the worst part of the "treatment". A lot of us, me included, had to visit the hospital to get stabilized so to speak. Everything he is experiencing now will just get worse and it's like a snowball rolling down a hill, it just gets bigger and so do his problems. As always, hydration and calories are important so IF he could get those in his system during this crucial time it wouldn't be as bad as I described but that's the problem as most of us ignore water and food because of the pain and nausea and constipation and everything else and that's what lands us in a critical situation.

The good news is that after about 2 to 3 weeks post Tx he will finally walk out of that dark tunnel he's been in and he will start to feel much better and he will know that he's finally in the recovery stage.

Hi David,

Thanks for responding. Hope all is well with you!

Do we know why the problems get worse after treatment is over? Is it because the body is so used to being zapped that it is basically on overload and trying to adjust back to what it knew as normal?


Could you tell me what they can expect from the problems getting worse? Mom doesn't want sugar coating, she wants the real deal, so as always, I appreciate your help and honesty.

Larrysdaughter,
My understanding is that radiation actually continues to build/burn/fight for the month after treatment. My dad finished his treatment November 18th and just started to swallow last Saturday, still occasionally uses suction, and has gone from very tired to tired. His voice is croakey etc.
But there are little improvements all the time and a great relief to be finished with treatment. Also look for depression and general anxiety for yourself, mother and father during the time you wait for results.

First of all, the standard caveat -- no two people are alike when it comes to treatment response & course. Having said that, given his problems to date, it would not be unreasonable to expect that things will worsen a bit over the next few weeks, then begin to turn around. Although Brian and Gary can probably provide a more cogent explanation, it is my understanding that the radiation is a cumulative effect, not the reaction to the immediate treatment. So, while many feel great for the first few weeks, the cumulative effect of the treatment starts impacting them after that. Under the same theory, the cumulative impact would build for awhile after treatment.

I was fortunate, in that my effects were relatively mild. I have frankly had more problems after treatment with the nerve impact of the neck dissection and fibrosis from the radiation, but I am not complaining.

Once the initial post-treatment period passes, things can start improving at a pretty good pace. I am just over 7 months out, and have most of my taste back, can do pretty much anything I want, and can eat almost anything, provided I have enough water with me.

My motto throughout treatment was "Prepare for the worst, rejoice at the best." While this worked well for me, it has its toll, too. Going through 8 - 9 weeks of treatment mentally preparing yourself each day for some new awful side effect wears on you. I had a real problem with depression in the early aftermath of treatment, and still battle it off and on.

It is something to watch out for. Also make sure that he gets plenty of rest. Getting over tired seems to make my depression worse.

In "stupid terms" as I say, it's like a microwave. Once you pull the meat out it's still cooking so once we finish rads we are still cooking. All of our problems taken one on one are manageable but when you combine the effects both physical and mental of weeks of nausea, pain, dehydration, constipation and total body weakness most of us reach a critical point when our body is about to give up and that usually occurs 2 to 3 weeks post Tx. Our body has been under extreme attack by the cancer in the first place and then we undergo surgery (some) and a combo of chemo and the maxium amount of rad our body can withstand in a lifetime. Most of us don't help our body by depriving it the water and fuel it needs to meet minimum daily needs much less one under such stress so the outcome is logical to me.

Tell him to get as much water and "food" in his system as he can and hang in there for a few more weeks and he will see progress.

I have to agree with Jeff & David. I hurt more after 3 weeks of rads and surgery than I imagined. I hope after this last week of them I don't hurt much more. The pain meds are like putting gasoline on a fire to control the burn. I wait a week and then go for the gold the 29th. Have a good day all and make the best of it.

Just to give a little balance here:

Bill was the odd one that started doing better immediately after his last rads. I keep trying to analyze how quickly he made progress.

The last week of treatment, he was hospitalized (three days) with a high fever and neutropenia (very low blood count.) While there, he was on heavy antibiotics, morphine, fluids, and a feeding pump thru his peg. He missed three rad appts and one chemo which he made up the next week and then he was finished. I can only assume that the extra fluids and antibiotics helped kick whatever (mouth sores??) and gave him a boost to start healing but he was off any pain meds two days after coming home and never needed them again. In fact, I think he stopped the pain meds too abruptly as he had insomnia for a week. He never had any worsening symptoms or mucous...just started feeling better and stronger each day. He was eating by mouth starting around the end of week two after treatment.

Just thought I would add this as a way of saying that everyone is different. I do think the majority of patients have a rough go for a few weeks after treatment ends...we just thankfully didn't.

Deb

Hi,

As others have pointed out, each person has different experiences and not all treatments are exact.

My Dad did his treatment at age 69 Apr-Jun 2006; 35 IMRT rads and 3 cisplatin chemo's (weeks 1, 3 and 6 I think). The last 2 weeks of treatment things got rough. This is when he started using the pain meds. The last week of treatment was the worst. He was very tired and nauseas. The treatment center gave him daily IV fluids the last week of treatment for hydration before each rad (this helped). Getting up the phlegm was very hard and rough on him. He wasn't getting as many cans in the tube either. He lost a total of 80lbs (he had the weight to loose).

As I recall the first week post treatment; not having to go each day for rads made it a wee bit better. By the 2nd week post treatment things were starting to improve each day better and off the pain meds. A week after that he was eating by mouth again.

So hang in there. Stay strong. If your father needs somethng speak up at the treatment center. Make sure he's hydrated! Very important.

Best wishes,
LisaB