Want to be prepared for Mom's radiation treatments....

[BettyBP]

Hi Everyone -

We met with radiologist yesterday and Mom will be going in for another CT Monday at 10am (without contrast) so we can pinpoint the area(s) that will receive treatment.

She will be getting 5 weeks worth at either x25 straight with weekends off or 2 weeks on, 1 week off and then back on (if she is experiencing pain and wants to stop)

My family, including my Mother wants to be prepared and have what we need in the house for her to eat during this time if there is pain in swallowing. That seems to be the doctors main concern at this point.

He said NO SODA due to the carbonation and that is ok - what about juices? He talked about acid reflux causing pain and is also starting her on a daily heartburn pill (although she only takes them when she knows she is having sauce or something moderately spicy). Was anyone else here put on daily heartburn medicine?

What do you suggest to keep on hand in the house besides protein drinks and soups?

When does pain swallowing USUALLY begin?

I know not everyone has experienced pain while swallowing, but whether you (or the person you care for) HAS HAD or NOT HAD problems, I would like to hear about it and anything that can help us try to prepare a little ahead of time.

thanks so much again to everyone here - you all are in my prayers as well.

[Connie B]

No I didn't get daily heartburn meds, but I did get heartburn a couple of times during my treatments. I just took over the counter stuff and it was no big deal.

As for eating, once again, everyone is different. It's a wait a see situation. She might do well with most foods, and then again, she might only want warm things, or cool things, or whatever. I don't know about spicy though.

The last two to three weeks people start to have problems. Very few have problems at the start, BUT anything is possible.

My throat felt like I had cut glass in it. So, it was hard to swollow things like meat, and cereal, (hard things). I stayed with the soft stuff. This is to hard to plan ahead for, being no two people are alike. You just go with the flo and play it by ear. It works!

Good luck.

[dr_lindac]

My mom had the same experience as Connie B. But mom was given a couple of medicines; one was an anesthestic that she was supposed to take to coat her throat. It was like Choraseptic in that it numbed her for a few minutes so she could get food down.

She had a longer than usual problem with the soreness, but it did go away. It started about 3 weeks after radiation began and lasted about a month. It was frustrating for her and she had to look at food as nutrition for a while (it was hard to enjy it). The really important thing is to make sure your mom stays hydrated, even if it hurts to swallow.

I've also read a lot of posts from people who had almost no problems with sore throat from radiation.

Keeping her in my prayers. Tell her to just hang in there .

[recce101]

I haven't had radiation, but I did have an irritated mouth, throat, and esophagus from chemo (probably the Taxol) which caused problems swallowing. Anything grainy (bread, meat, some beans) was irritating, anything with sharp edges (nuts, most raw vegetables, some raw fruits) was painful. My favorites, in fact practically my entire diet for a while, consisted of things like creamy soups (lukewarm, no large or sharp-edged chunks, a minimum of meat, sometimes run through the blender before heating), soft fruits like peach slices and pear slices (canned or packed in individual cups with juice or syrup), smooth puddings, Ensure/Boost or their less expensive clones, Carnation Instant Breakfast (many flavors available) mixed in milk, and ice cream (no nuts or other chunky things). Basically I had my own stash of tried-and-true foods for snacks and mealtimes, then if the family was having something that looked interesting and tolerable I might take just a little -- but I tried to prevent my limitations from affecting others as much as possible. Nevertheless, it was a difficult time for my wife as well as myself.

Good luck and Aloha,

Ned

[blueeye]

My Mom was started on Carafate right away and she didn't have any burning IN the esophagus. But at one point she told him it felt like there was something stuck in her throat and they gave her a lidocaine viscous solution to swish and swallow. She used that even though she never complained about her throat. Just the "stuck" feeling.

[BettyBP]

Thanks everyone for the replies. I have sent them all on to my parents and brothers.

Will let everyone know the plan of action when we meet Mom's nurse from Pluta when she goes for her CT tomorrow at 10am.

thanks again

[teriw]

I just want to add one thing -- if your mom experiences a bad taste in her mouth along with "broken glass" pain when swallowing, make sure the doctors check whether she has a thrush infection. Bill's went untreated for way too long, because we were told about the side effect of painful swallowing, but not about the potential for thrush. He described it as everything tasting like motor oil, even things like popsicles. Once we really looked, there was also a film on his tongue.

Wishing the best for your mom.

[lc46]

Hi-My Mom had concurrent (twice a day) radiation to her lung for 3 weeks-she did not have one problem until her LAST treatment-that night we brought her to the ER because she couldn't even swallow her saliva. It got better as the weeks went on-I would say about 2-3 weeks. She forced herself to eat/drink so she didn't lose weight or get dehydrated.

Even water hurt-I know it's hard to imagine - I have heard many people say they couldn't swallow their saliva-my Mom would spit it out in a napkin because it hurt so much.

Hoping everything with your Mom goes well.

Dar

[dchurchi]

Betty,

My husband Alan had some swallowing issues with radiation.

He could not really eat anything that was too cold, like ice cream.

Soft foods worked best with Alan, scrambled eggs, mashed potatoes ect.

Foods like toast, when there could be "sharp" edges

hurt him to swallow.

You will probably just have to experiment and then

again your mom may have no issues at all. That is what I will pray for.

[BettyBP]

Thanks everyone - I am soo scared right now and I cannot imagine the feelings going through both of my parents minds....

Mom is so strong and ready to fight. Yesterday she receieve THREE marks on her chest and will start radiation tomorrow and will go daily at 8:15 each morning. The two spots she wanted to show me were marks right down the center of her chest

We go back this afternoon for a final set of x-rays and to make sure the simulation has her in the correct positions.

Hs anyone had radiation to three spots? I know one spot is causing the problem with the lung, one is a tiny one and not sure what the third spot is at this point

Just scared because one field can be bad enough, but THREE?????

thank you all for you support

[Guest hearrean]

As to the marks, I think it depends upon which type of radiation she is getting. I'm receiving what's called IMRT (Intensity Modulated Radiation Therapy) which actually shoots the radiation beam in a 3 Dimensional pattern so it kills not only the top, but both sides of the tumor(s). Given that, I have marks (crosshairs) not only close to the center of my chest (which is where my primary tumor + nodes are located), but also crosshair marks around on each side down about 6 " below each of my armpits. The robot arm swings 180 deg. and shoots each side as well as top center and also shoots at a 45 deg. angle on either side of the tumor. But if your Mom is getting traditional radiation, these type marks (and radiation pulses) probably won't apply.

As to the esophagus pain, I can tell you from 1st hand experience, that getting radiation along with chemo does enhance many of the side affects. This was proven to me when I was given a (1) week break from chemo. My throat had really gotten in bad shape, but when the chemo break came, my throat actually started healing & began feeling much better. When I resumed chemo last week, my esophagus began to hurt again. So if she is only getting radiation, she should fair better than if she gets both. But the esophagus pain & difficulty swallowing has really been my only side affect from radiation. Liquid Carafate does wonders, so make sure you talk to her Doc about keeping some on hand. Also pick up some liquid Gaviscon to have on hand. This is sold OTC, is somewhat expensive, but very much worth it. Like the Carafate, it coats the throat and really, really helps. As to the Gaviscon, don't try & substitute one of the store generics; stick with the real stuff!

Good luck to your Mom.

Ken

[BettyBP]

Ken, thank you so much for the detailed account and hope you start feeling better soon.

I dont want to pry, but can you tell me what feels good to eat? I just want us all to be prepared for when and if Mom starts getting that "broken glass" feeling in her throat that I keep hearing about.

So scared for her and my father right now and just praying for all clear at the end of the next 25 days.

She goes back in this afternoon and will find out if IMRT or not - she has like 5 marks on her and it made me scared that they were going after 5 areas when her last report only showed one tumor and enlarged node.

thanks again. prayers and love are with you

[Guest hearrean]

"BettyBP"]

I dont want to pry, but can you tell me what feels good to eat? I just want us all to be prepared for when and if Mom starts getting that "broken glass" feeling in her throat that I keep hearing about.

I haven't had what, some are calling a "broken glass feeling". Mine is more like a lump/knot in my esophagus. Sort of like when you get a large pill hung half-way down. With that does come some burning. When I swallow, the pain I feel is when it hits that area that is swollen/restricted as it's trying to pass thru a smaller opening. Sometimes it feels somewhat sharp & other times just pressure.

As others have mentioned, I find soups & smoothies to be somewhat comfortable. However you do have to be careful with anything hot or even anything cold. Cold water really hurts which seems strange, but it does. Lukewarm soups, smoothies, grits (I'm from the South), soft eggs, juices. But be careful with juices. Stay away from acidic juices like orange, grapefruit & cranberry. Vegetable juices like V8 are ok because of their nutrition, but in moderation because of the tomato. (This can cause GERD). Have her try some of these, and eventually her body will tell her what she can do & tolerate. She probably won't have many issues the first couple of weeks however, but then again, all of us are different as many on this forum have pointed out.

Hope this helps.

Ken

[ztweb]

Dad had it all in a row on the weekdays, and it wasn't too bad. He had PCI.

He didn't like being strapped to the table, and I will say that the mask was hanging in his bedroom for a very long time...come to think of it, I don't know where it went! Interesting!

He lost all of his hair, and it had a VERY hard time coming back. His head got very, very tanned. He didn't have too much trouble with swallowing...but it was harder with dry things or bread products that he felt "swelled" after he chewed them. He would try to eat a "little" "alot" of the time.

The biggest thing we thought was staying hydrated. We always said how it was as if he was getting a sunburn from the inside out...so he needed to keep the fluids. He wsan't a huge boost fan, but he took it. He ate a TON of watermelon, and drank juices that weren't acidy.

Good luck!

Jen

[BettyBP]

Thanks Jen again for your help and advice.

The doctor told Mom that one thing that wont happen is that she will not lose her hair with the radiation to the lung. FOr which she is very thankful as the hair is finally all coming back and even tho it may only be an inch or so, she is very happy about that.

I will keep in mind about the watermelon - she starts today at 8:15 and I am a wreck - she wants to go alone... and told me this morning that she will go alone until she thinks she cant do it (if that time comes)

thanks again to everyone on this site that has saved my sanity

[BettyBP]

Ken - the Gaviscon I found at the store in both liquid and tablet form state they are for heartburn/gas/GERD etc and nothing about sore throat?

Is this the same medicine you were speaking of?

Mom completed her fifth radiation treatment this morning and is doing really well and is sooooo upbeat and I am going to pick her up the Gaviscon and some vitamin water this afternoon and want to make sure this is the right stuff.

Another update on Mom is that she asked the doctor if she could color her hair on Monday and he said yes - so her multi-colored white, grey, black hair is now a blonde mix...she is pretty happy about it and it took Dad 24 hours to notice, but told her he thought the radiation was doing something to her hair.

She has curls coming in now too and says it is the first time in her life she has ever had curls (at age 65)

thanks again everyone here....