Those that have gone before me

[kimblanchard]

Met with the radiation ONC yeaterday and the staff. Had the mold made, chest tatoo'd and start treatments next week.

My Esophagus is right behind the Tumor and will be radiated rather heavily. My question is for those that have gone through this....what will help ease the pain and what do you advise to try and eat/drink with a sore swallow'er.

Got a feeling this is going to be tuffer for me than Chemo was.

Thank you

jim

[Addie]

Jim....ask about Amifostine shots. They are not the easiest to take...some people cannot tolerate them at all. But I was able to tolerate them (until the last couple of days) thru 31 days of chest radiation.

Amifostine, it was discovered back in the Eisenhower years, provides protection for the esophagus. I was able to eat pretty well throughout my chest rad and the only times I got sick were when I ate something they'd WARNED ME not to eat...like fried foods or anything spicy.

I also found yogurt drinks very easy to get down. Dannon makes one called Frusion. They are 16% protein and I want to say around 250 Calories...so a couple of those a day were soothing AND helped to keep my weight up.

I guess not every place even offers the Amifostine...but I hope it is available to you to at least try. I had to go about 1/2 hr. or so before my scheduled radiation to get the shot...which can go in the arms, tummy, thighs or high up on the posterior. Then you have to wait 15 minutes to make sure your b.p. stays okay. Amifostine can make it drop and they don't want you passing out on your way to radiation.

I never had a problem with my b.p. and it was only the last 2-3 days really, when my body was starting to say, "ENOUGH ALREADY" to the shots. I had an allergic reaction and ended up with two red bullseys marks on my butt that lasted for 2.5 weeks. And NO I'm not gonna post a picture of them!

The other thing with Amifostine, is that you have to get the radiation within an hour or so of the shot. So if they were running late in rad I would always REMIND THEM that my shot wouldn't do any good unless they squeezed me in there. They always did, within the time parameters.

Good luck...and let us know what you find out. Meantime, even without the shots....cold stuff seemed to go down easier than hot...and you may be one of those who isn't terribly troubled anyway. But do keep us posted...eh?

[Stephi]

Jim, they will probably also give you the well known "mouthwash" to use before meals..it tastes nasty I'm told, but it does give immediate relief. You will use alot of it. Larry went through several bottles a week sometimes..good luck to ya sweetie..

Stephi

[Kasey]

Jim,

Apparently my tumor was pretty close to the esophagus too. I really didn't have too much trouble until about 3 weeks into rad. And even then, it only lasted about 2 weeks tops. Happened to be right at Thanksgiving. How awful to smell the turkey and see all the goodies and drink a milkshake instead.

My trouble came about 6 months later. Had NO trouble in between there. My esophagus suffers radiation stricture and I have had it stretched 4 times since March or April. It is pretty good now, but will never be all right again. But hey, it is doable, you know what I mean?

Good luck, Jim. I have a feeling you will tolerate this and move on with good results.

Kasey

[SDianneB]

Popsicles!! They are good, nice and cold and felt really good to me going down, and they are good for fluids. The radiation oncologist told me they were excellent for fluids after the radiation, because it wasn't like drinking water -- it was a slow infusion of liquid which helps with healing.

My chest radiation was over about a year ago, and every time I have a chest CT, they report continued improvement (meaning more healing, but slow!) in that spot, with minimal scarring.

The radiation techs also recommended sipping on Mylanta, but I didn't get to that point, as the popsicles worked really well for me.

My best to you!

Di

[Stephi]

Jim,

We used pure aloe gell for t he rad. burns also..be sure to wash this off completely before the treatments and put it on right afterwards. Larry's skin did get a little "crusty" from the burn and he had just a little itching, but no pain from it, so I guess the gell worked. He also drank the pure aloe juice..get the stuff called "George's" it has no taste and is just like water..the other stuff can be nasty.

Stephi

[Patkid]

No experience, here, Jimben, just lots of support and we are so glad this option is open to you!!

Plan on the best outcome and it will happen, we just know it!!!!

Love

Brian and Pat

[bunny]

jim, I PMd you.

you know you're always in my thoughts.

xoxo

amie

[Fay A.]

Jim,

Ask about the Amifostine Injections. I had 33 radiation treatments and the injections. Radiation treatments start out easy, but things become worse as time and treatment progresses.

The Amifostine injections make some people very sick to their stomach. And they can cause a sudden drop in blood pressure that is usually temporary. And it causes a nasty headache. But it did help to inhibit radiation damage to normal tissue.

I had to drive myself to and from treatment each day, a little over an hour in each direction. I would pack a bag that contained a few bottles of plain water, plain saltine crackers, and wet washcloths that had been frozen. Each washcloth was in it's own ziplock bag. (using the cloths this way made the "ice pack" thin and light. Easy to keep on my neck without using my hands to do so.) When the stomach upset would hit I would sip the water. About the time the radiation treatment ended and I would have to drive home is when the real nausea hit, so I would sit in the car sipping water, and nibble at the crackers to help calm my stomach. Also, I would put one of the frozen washcloths against the back of my neck. All of these things are what I did to stop nausea during pregnancy. I don't know why they work, but they did work, at least for me. Especially the super cold cloth on the back of the neck. Once I was driving I would change the cloths as they would defrost or become less than very cold. May sound like a lot to go through, but I think it was worth it to obtain the benefit of Amifostine Injections while undergoing radition treatments to the bronchial stump and subcarina.

Also, use pure aloe juice on the skin. It doesn't interfere with the radiation treatments like some lotions/ointments. And it does help. Also there is a drinkable form of Aloe Juice, too, to help with the sore throat.

Jim, you're probably going to be sick and very tired, but having gone through this myself with some success I can honestly say it is just SO SO SO worth it!

Hang in there.

[Connie B]

Well, everyone said all the same things I would have said, and some! You'll know what you can and can't eat or drink. I was like Kasey in that I didn't have any discomfort until near the end of treatments, and then they were doable. I'll just hope and pray for the same for you.

Hang in there. Your in my thoughts and prayers.

Hugs,

Con

[Frank Lamb]

Jim,hoping you are one of those with little discomfort.I had a bad time with it every time I had to go thru it.(3 diff.times with 3 diff tumors).

As Fay stated tho it is well worth the discomfort.I had good results from it each time.

[Don Wood]

Jim, get the magic mouthwash prescription from your onc. Stock up on plenty liquids such as Ensure, Breeze, Smoothies, ice cream, Frosties and plenty of ingredients that can go in the blender for a liquid drink, such as bananas, strawberries, whipped cream, etc. Don

[kimblanchard]

I wanted to concur with the amnifostine. I too got the shots for 40 rad and 8 weeks of chemo at the same time.

This stuff worked great!!! They kept telling me I would not be able to eat, drink or swallow and may need a feeding tube a few weeks in, but the shots really helped, instead of the 20lbs they thought I'd lose, I gained 20!!!! Kept thinking I would not be able to eat so for the first time in my life I ate whatever I wanted.

If you want any more specific info in amnifostine let me know. I've heard the side effects can be harsh, but I had a very good experience.

Good luck!!!

Vicky

[Maryanne]

Hi Jim,

You certainly received a lot of valuable information from your post.

My husband had no experiece in that catagory, but I just wanted to let you know that I am thinking of you and wishing you miminal side effects.

Good luck Jim, please keep us posted.

Maryanne

[ma's kid]

Hi Jim,

My mom found cool things the most soothing. The magic mouthwash really helps her as well as the liquid tylenol with codeine.

Libby

[hollyanne]

Jim -

Just want you to know I will be thinking about you. My mom just finished radiation on the neck...and her throat is raw/raw. I found that high calorie Ensure (strawberries and cream) blended with raspberry sherbet, milk, fresh berries/banana -- stick with blueberries or smooth fruit -- gave her a bunch of calories and some relief.

Just reading some of your posts has been such a strength to me...go get em!

Holly

[Snowflake]

Jim,

When the irritation began, I took a shot of aloe (as in a shot glass) about four times a day. When the irritation got worse, I drank a shot of aloe and followed it with some really nasty tasting medication that was once used for treating ulcers (I cannot for the life of me remember what the drug was)...

Oreos were easy to swallow, they dissolve in the mouth. Liquid was a little rough to get down, the milk chaser for my Oreos was a killer! I would suggest eating watery things to keep the actual amount of what you swallow small enough that your gullet doesn't bounce.

All my best to you,

Becky

[J.C.]

Jim,

Mike's experience with the radiation was mostly

taken care by a complete change of food, what

he hated before he craved for and all his

favorite food were no good anymore.

A lot of small meals, milk shakes and dark chocolate

that melted in his mouth all mushy food went down

fast, the liquid were harder to keep down.

Good luck with your treatments.

J.C.

[cindi o'h]

Hi Jim.

I got zapped all around my swallower as that was where the mets to the lymph nodes lived.

I remember one time eating some sushi California roll... felt like I was swallowing a brick. Never again.

Each day was different. Textures were sometimes difficult to swallow...smooth food...like mashed potatoes were sometimes nearly impossible. You will figure it out.

I did have trouble with temperture of foods on most days. I couldn't tolerate anything other than body temperature foods. Sometimes a few degrees off were rather painful.

Be sure to apply lots of burn cream to your skin "after" your treatments, but go in with clean dry skin. I got 3rd degree burns and had to have wound care for the last few weeks.

It is not fun, but it is doable.

The best part of the whole thing were my techs, doc, and nurses. They were wonderful. I really missed them when I was all finished. I hope your team will be like mine.

Let us know how you do! Will be praying that the lymph node goes up in smoke!

love,Cindi o'h

[pammie]

Jim, I pray for you each night by name. will continue to do so and especially that you will be able to not have a lot of discomfort from the rads. pammie

[Nushka]

Jim,

I can't add to the advice you have already gotten. I can add my prayers and good wishes. You can do it.

Nina

[rvillella]

Jim;

I am in my third week of radiation and I can tell you that anything that eases the pain in the gullet is worth it. My RAD ONC prescribes magic mouthwash (nasty tasting stuff) and my Chemo OMC says take the pain killers from my surgery. All in all it is rough but doable. Not everything goes down right but you have to keep trying. I got bad enough this week that they had to pump fluid into me before my chemo because I was a little dehydrated. Soft foods seem to work for me. And some things that I didn't think I could eat I can. Everyone's different.

Praying that you sail through without the discomfort.

Ralph