hi laurie --- ack i know its all so overwhelming. yes everyone is here and will hold your hand through it all. that was so reassuring to me, couldn't have done it without this forum. i had, compared to others, a very easy radiation experience. (did not have chemo, which i know makes a huge difference) i started preparing my neck with aquaphor two weeks before i even started radiation. i had outfits picked out for the 6 weeks, wore my sons flannels. i just did things like that, bec i knew that would help me mentally. (trying to control the little that i could) i also had a play list of music i would listen to during radiation. that helped me mentally and spiritually too.
i won't repeat what cheryld said, because that's exactly what i did. (she and christineb held my hand through the whole journey)
and like i said, tho it was no ride on a pink duck, i really did not have any pain to complain about.(just nausea and feeding tube problems) hoping and praying the same for you. will keep my eye out here to see how you are.

Hi Laurie - sorry you have to be going through all this but it sounds as if you have a great attitude, and of course your knowledge as an MD will help (or maybe you know too much !)

All the advice these folks have been giving you is great - the nutrition, the swallowing all the time, the various salves and such. You didn't mention whether or not it was recommended that you get a PEG. I did not, but found that a few weeks into rads I wished I'd had because of mouth sores. So it's certainly something to consider.

The mask is also pretty daunting, but I found that listening to music or an audio book during treatment was a lifesaver.

Please continue to ask questions here. You're part of our family and we're here to help. I know it's fatuous to say "don't worry", but I hope that the continued info you're getting here will help you achieve equilibrium while you await treatment.

I'm sure you'll come through it with flying colors!

Hi Laurie - my experience with radiation (only) wasn't bad at all. Like the guy above, I drove myself to treatment every day, but it was also only an 8 minute drive. I did have some dry skin around the neck area, worse on the left side where the radiation was more concentrated. But, as recommended I used Aquaphor morning and evening and the skin never ruptured into open sores. I also took their advice and wore no shirts with collars for about 3 months.

Losing pretty much all my appetite and taste was the worst thing of all. The mouth was sore most of the time and with no appetite I just had to force the Ensure down, 5 to 7 bottles per day. The docs wanted 7 but a lot of days 5 was all I could do.

Many people have said I had a very easy time through the radiation treatment, with very few side effects. I agree, it was a lot easier for me than for others.

Who knows if you will be one of the lucky ones, it's certainly possible.

good luck with it.

Tony

Hi Laurie,

I'm another that had a relatively easy time with the radiation. I had 70 gys over 40 applications, augmented by three applications of Cisplatin. I suspect that you'll have the same, or a very similar experience. BTW, may I strongly suggest that you read my intro, the URL in at the top of my sig.

At the time I was doing this, I was also full-time caregiver to my 88 year-old maiden aunt, who never knew because I knew it would freak her out to know that her fate was in the hands of a guy with stage IV cancer.

You will lose your sense of taste for a while. The loss will be sudden and complete. I was just about to eat a bowl of Vanilla Bean Ice Cream (my fav,) until I took the first bite, which I promptly spit out. It was exactly like frozen poster-paste! But that wasn't the worst, which care a week or so later as I was about to eat a chicken breast.

My radiation was to eliminate 4 tumors (all in lymph nodes) and resulted in burning out about 50% of my salivary glands, and customizing the remaining ones so that they would produce a super-thick substance with the holding power of super-glue.

So, I take bit of chicken breast and proceed to chew it as usual. Uh-oh...
the dry (the primary characteristic of chicken breast is DRY) chicken breast immediately acting like a sponge, sucking every atom of moisture out of my mouth; while the saliva acting like super-glue, immediately glued every one of the chicken-sawdust particles to a different spot in my mouth.

Acting swiftly, I got a glass of hot water and swished it vigorously around in my mouth (I can still hear that chicken sneering derisively and asking "is THAT all you got, sonny?") with no discernable impact. I had to stand there and use a finger to peel each and every one of those tiny hunks of chicken out my mouth.

The most unpleasant part of the experience was the 25 mile drive each way to get the radiation, as I was so nauseated that I had to constantly be on the look out for a place to pull over and hurl. Fortunately, I never did, but it felt that way.

Anyway, that was the worst of it for me, others had a much worse time with the radiation; but amazingly, I never even had my skin get red - and it burned out those tumors, for sure!

I suspect that you will have an experience much like mine; unpleasant but not horrific. And the best part is that when it's over, the nausea soon quits, your appetite returns and all is good, once again. Don't worry about it, it'll soon just be a memory.

Good luck,

Bart

Hi Laurie,

Everyone is different. You can see in my signature what I went through as it sounds like it will be similar to you. It pretty much kicked my butt but I'm alive and kickin' at almost a year out and doing Ok. Even went back to performing music again as of last week

My friend Donfoo will confirm, the key is NUTRITION, HYDRATION and PAIN MANAGEMENT. Keep those three aspects in check and you'll get through it. One day at a time, one foot in front of the other...

Positive thoughts and prayers

"T"

I had a bad experience in the MRI, and thought I'd be claustrophobic in the mask. But the staff are great and rads soon becomes routine. Make sure you get them to cut the eyes out. It feels more like a mask and less like a cage. In fact these days I find it quite empowering to see my reflection in the mask. Like a cancer fighting superhero.

Its all about the self talk in the head mate, keep it as positive as you can.

They cut out my eyes nose holes and mouth. They can do this if they haven't already. ;o) The rads isn't bad. I closed my eyes imagined myself on a beach. listened to the music. I made it fast and easy by wearing a sports bra with no metal and a tank. Walked in took off my jacket. Jumped on the table... got nuked. left.

And as with someone else here. I drove myself to all my treatments,except chemo days... my hospital was super cautious with cisplatin and they would keep me overnight, and run a line of IV to flush my kidneys. ;o)

Those days my hubby dropped me, only because I didn't want to leave my car overnight in the parking...

hugs.

Hi all

These replies are SO helpful. They make me feel like I can do this, and like I'm not alone! I am still recovering from surgery so won't start Rads for another 2-3 weeks. Am meeting the oncologist tomorrow to discuss chemo although I'm fairly certain it will be recommended as I had ECE in my one involved node.

I'm sure u will all be hearing from me again soon! This forum has been invaluable so far in getting me prepared (I already bought my WaterPik :-))

Thanks!

Hi Laurie, I remember you. You had the sentinel nodes biopsy, which isn't that common, yet. Sorry you're back, but If I can do radiation, anyone can! Good luck.

PaulB, yep unfortunately that was me. False negative biopsy. Maybe that is why it is not standard of care yet . Anyway, im ok with what we decided, but sad to be back. Ill be starting Rads/chemo in a few weeks so Im sure you'll hear more from me soon!