Since neither my sister nor I live in the same town as our mother we have been sharing the radiation treatment period; I am now back in town to take her for the last week ( of four).I guess I dont need to tell you about the pain of swallowing - she tries valiently but says everything but water stings and burns. However, my sister was given a script for solucortef - she told me the doctor said it is a local anesthetic. Googling comes up with some kind of steroid but I cannot find any references to this liquid form or for using it so you can swallow. I wont be able to ask an MD until mid week. Does anyone know what it is, how it works,side effects, and how far ahead of meal time it should be given?

I bullied my mother ( age 91) into drinking an entire can of Ensure Plus. It hurt.She hated the oily texture. And it took 3.5 hours.BUT the neat thing was about half way through it you could SEE her getting some energy back.

Second question - is it true that the radiation will keep working for 2-3 weeks after treatment stops? And if so, does that mean she will continue to get worse before eventually plateauing? I am trying to anticipate what sort of care she will need as I have to go back to work.

WD

Hi WD, It is hard to predict how recovery will be because everyone is different. Several folks here suggest that it continues to get worse until after the last treatment. In my experience the worst was the week BEFORE the schedualed end. I felt better after 2 days once the treatments stopped. I hope your mother has the easier time!

You are great for helping her and it is also good to stay on her to keep trying to drink and eat.

***Make sure she is drinking lots of water for sure. Dehydration can happen and result in a trip to the hospital for IV fluids.***

Many pain medications will cause constipation. Severe constipation! this is a subject we have joked about here in the past....but it is no laughing matter.

In terms of care in the next few weeks I would hope you can arrange someone to be with her every day. Not so much because of medical care but for companionship and someone just to "be" there. She may be tired (and hurting) enough to not want to try and eat or drink. Sometimes just having a coach is all it takes.

Take care you are in the home stretch!

WD,

I am one of the people that got worse after treatment. First couple of weeks in were a breeze. Last week and 2-3 weeks after were pretty bad. One of the quotes around this board has been, although everyone is different, it's usually "one month of recovery for every week of rad" although the recovery comes in stages of slowly getting better. It really needs to be judged in days not months or weeks.

We each respond differently.

Guess I don't understand why at your mother's age and if I remember right low weight the doctors did not recommend a peg tube? I know I didn't have one, but seems as she would be a prime canidate??

Right now she needs all the help she can get for nutrition to aid in healing and as Mark said, dehydration is a big worry and can lead to more problems.

Sorry, no answer on the medicine. I was given a liquid called pink magic, Pepto, lidocaine and benedryl(sp) It numbed my throat before every bite.

Good luck,
Dinah

Dear WD,
Dan definitely got a bit worse the two weeks following treatment, although he had 8 weeks of treatment and maybe that is why...we were told the radiation stays and still works in the body weeks following the end of treatment. Dan had a PEG tube and definitely needed it and used it totally for about 6 months. He still lost about 30 lbs., which is okay because he had some extra he could lose.

Take care...prayers are with you for you and your mom.
Debbie

Dear Mark and Dinah and Deb, thank you for this. I shall hope most fervently that she is more like Mark than Dinah and Dan. You cheered me greatly, Mark, to hear it is possible to start feeling better so soon. I get the impression more people continue to get worse. It hurts to imagine her feeling more miserable than she already is; she has always had wonderful spirit and independence and love of adventure, but now she is just enduring.
As for the Peg tube, I had never heard of it until I found this forum. No one mentioned it. When she sees the physician this week I will ask about it. I am unclear about how it is inserted. I assume it requires general anesthetic, and maybe they didnt want to risk putting her through that.
As for dehydration, she is drinking tea, so at the moment that is less of a worry. But if swallowing tea becomes a problem, oh boy....

Debbie, I hope Dan does well. He must have a strong will to take 8 weeks of chemo and radiation given what I see 3 weeks of radiation only doing.I wish him the best.

Worried Daughter, I want to chime in as another who felt better right way after 7 weeks of chemo/rad stopped. I was burned, but on drugs so I felt no pain, and I got stronger daily. Every single one of us is different, but I think that independent spirit you mention will go a long way to helping her recover. And although I have very fair skin, I did not burn until week 7, so your mother may escape that, which will be a great help. Please let us know how she is doing.

Worried Daughter,

I thought the first two weeks after radiation were the toughest and I went back to work only to find out two months later that my energy was just totally drained. I checked the thryoid regularly but just got totally exhausted. Everyone is different, though.

I had a PEG tube but I rarely used it except for Robitussin cough syrup to thin out the thick goo in my throat. That stuff will make your hair stand up if you drink it. It was like liquid fire, to me ! I could not get more than about half a can of Ensure down the tube and it would come right out the mouth. The doctors determined my stomach was positioned wierd and somewhat smaller so they tried to let some of the water out of the bulb inside but to no avail. It was more hassle and hurt a lot of the time but they wouldn't let me take it out for almost 8 months. Again, that was just my case and not the norm.

Remember caffeine in tea will increase the dehydration and de-caff would probably be a better choice.

Your mother will get better, especially with so much love around here. I wish you all the best!

Ed

Ensure is not oily tasting. That just must be her taste buds shutting down from the radiation. I couldn't eat food because everything tasted salty. I read somewhere on this board that the salt atste is the last to go. Guess I had lsot all the others and could only taste salt.

Anyway, I had no peg and lived on 4 cans of ENSURE PLUS a day. Make certain it is cold. It was a struggle, but generally could get it down in a half hour, but I had no surgery other than neck dissection. I liked the vanilla and butter pecan. Still drink it for breakfast.

Keep her spirits up and remember to take care of yourself too.

Eileen

Worried - if your mom doesn't like the taste of Ensure and you have Presidents Choice products in your grocery stores try the PC Ultra Shake plus Calories about 350 cal. in a can with 18 grams of protein. - my sister said the taste was far better than Ensure or Boost.

WD: Just to add my two cents worth, though we are all different, I had 7 weeks of rad/chemo and worked throughout the 7 weeks. No pain medications until after work as I drive a lot. The two to four weeks after rad were worst of the lot. But I got through it OK. Also, I had a peg and think it should be automatically installed before starting rad. I couldn't even swallow what little saliva I had left, let alone water and forget food for the last few weeks of rad and into the first 3 weeks or so after. I took ensure type stuff with instant breakfast to get about 450 calories per can. Had 4 cans per day through the peg and it stopped my weight loss at 25% of my starting body weight, 50 pounds total lost. Now back up 15 pounds and eating my fool head off. In looking back, it wasn't so bad, but going through it is a bear. Suggest you get mom a peg and keep her weight on. At her age, though, they may be concerned with the procedure because they do have to punch a hole through her stomach. Well, ask them about it and they will give you the best advice.