Hi all

So I'm 10 days out from my modified radical neck and will start Rads soon. Probably cisplatin as well, but that is to be decided this week. My question is, has anyone here had even a decent experience with rads/chemo? I've gotten myself pretty terrified after reading all the posts. I'm trying so hard to stay positive, and I know everyone's experience is different, but just thought I might feel better hearing that someone wasn't completely miserable :-). But maybe this doesn't exist?

Thanks!

Many have, Laurie, even if everyone is different.

For what my 2p is worth, don't psych yourself out too much reading other people's experiences. I've only started about 10 days ago and I've had some rough days myself, but I am getting through them and nothing, NOTHING I worried about would have changed those days.

Lots of people seem to have a pretty tolerable time of it. It's not fun for anyone, I'm sure, but I have talked to other survivors and it is possible to get through this without experiencing all of the horrors you might see other people go through.

Be strong, be yourself, and ride out each problem as it arises. Ask for advice when you need it and don't be afraid to get help, but don't go in assuming the worst will happen to you. Already In my treatment, I saw some things happen and dodged a couple of others. At the very least, remember that you can and will do this, no matter what happens and in doing so, you will get through it.

For myself, that's been the one part I've handled well. I did the reading, did the worrying, then realized it DIDN'T CHANGE ANYTHING and have gotten on with the work. I think waiting to start is extra tough and scary, so until you start, it may be tough not to let your imagination run riot. There are a LOT of people here who would tell you this more eloquntly than I will, I'll just say again, plan to fight your fight and no one else's. What comes, comes -- stay strong and beat this thing!!

My apologies if this is a bit out of place. I hope others will be able to tell you about treatment cycles that were nothing like horror stories -- I know those stories exist. I just wanted to share my recent perspective. I just came off of the waiting, worrying game and started treatment and I can say that the pre-treatment journey was its own special brand of difficult. Get through that journey, though, because the real journey -- the treatment and cure journey-- begins soon and I wish you all strength and luck on that journey.

Most of all, take care of you,

The Hellion

Yes, some members are fortunate enough to sail right thru their treatments. The common link in those patients is they pushed themselves with their intake. That is what is in your control and needs to be your focus.

Over the years Ive become a broken record with the following advice.... Every single day you must take in a minimum of 2500 calories and 48-60 oz of water. Getting more in is great and can be beneficial. I cant stress this enough! Every patient thinks its ok to skimp here and there, it wont make a difference in the whole scheme of things. By cheating, you are only cheating yourself. When going thru it, you will have a better understanding of this thought process.

As far as hydration goes, do not stop drinking. The swallowing muscles can quickly 'forget' how to work correctly. Later there will be bigger issues if you stop drinking every single day. Even taking small sips thru out the day gets those muscles working. Ask your doc for an open prescription to get hydrated in the chemo lab. This is an underused tool to help you avoid dehydration and all the problems that go along with it. After getting a couple bags of fluid, you will feel great.

Do yourself a huge favor and try not to worry about what is yet to come. It doesnt help and only gets the patient all stressed out. I know know difficult it is not to be concerned about your upcoming treatments. Stay busy, it really does help. Try taking it day by day and put your energies into the things you can control. By doing positive things and keeping busy it will help pass the time in a productive way.

Best wishes!!!!

I had radiation 5 times, three different types with IMRT, IORT, and Proton Therapy, with over 200Gy, and a number of things factor in with radiation.

Side effects depend on the type of radiation being given, what the dosage will be, called Grays (Gy), the daily fractions, the duration, where being radiated, if being radiated bilaterally or ipsilateral (both or one side), if the salivary glands are being spared, which usually are with IMRT or partially so, if just having radiation alone or with Chemoradiation, the type of chemo, if surgery or radiation was done prior, plus others things that matter. Also factoring in is your current health status, co-medical conditions, illnesses, medications that may effect treatment.

Several things that help get you through radiation is adequate nutrition, hydration, impeccable oral care, pain and nausea control, infection control, neck care, and rest.

I'm not saying worry to death, but you should be concerned or on heightened alert, and start taking some actions, since it's the fight for your life. I read everything I could, had the best doctors, hospital I thought, had a plan of action, even thought of plan B, and C, so I was ahead of the game, even found 2 more cancers before two different surgeries on my own from being diligent, which were then eradicated during the planned surgery. I also thought of my finances, my medical insurance continuation, and if it would be good to change or not, how I would get to treatment, everyday, what resources there were, shopping for food, meals, what your work benefits are, applying for short term disability, Long term, SSDI, SSI, if ever needed etc., so there are a lot to things to think about, some may just be a thought, some items may take more thought, other tasks can be delegated, some ate when needed, depending on the situation, change of situation, to plan, replan again after treatment. I'm just not one to sit idle to wait for things to happen, sometimes you do wait when all can be done until the next phase, but my actions helped me a lot, I believe.

Good luck with everything.

Yes I had an okay experience. The "ok" is relative to everyone else's horrible. Was it a picnic...? No. But was it doable? Yes.
Christine is right a lot of it is about intake - know what you have to do, and do it. Plan for the worst. Hope for the best.
By this I mean - note what others have gone through and start off working towards putting off those symptoms. For example neck burns... Day one I started applying cream to the area several times a day (never right before rads) from day one I rinsed my mouth out several times a day, invested in a baby toothbrush and cleaned it so that I never had food sitting in there. (I would leave the treatment room - go to the bathroom rinse and spit there and apply my cream. I also cleaned and rinsed after every meal/snack. I yawned repeatedly and did my neck exercises daily to help ward off the tightening of the scar tissue, and stretch my internal muscles and despite how painful it was I took my foods by mouth (for the last week of treatment it was primarily boost - and I made myself drink it.)
I bought club soda, flattened it, drank lukewarm water (cold hurt) avoided foods that burned, etc.. But keeping your mouth clean is very important.
I invested in a waterpik, and a humidifier.

Overall I had a week where I resorted to pain meds.

If you're sensitive to pain... Do stay on top of it.

Think about things that make you feel good (obviously not alcohol or drugs) but things like hot showers etc.. And follow through with them. I also slept a lot.

A lot of what you experience depends on where the rads is aimed as well, I had it mostly on the left side of my head, and bilaterally on my neck, so basically I hurt all over... I had blisters in my mouth and throat.

Bland soups, high nutrient smoothies, soft foods.

Hugs - you will get through it.

Hi,

Cancer treatments are harsh. Both chemo and radiation by nature are designed to KILL cells. Neither is targeted enough to just get the baddies. Collateral damage occurs, plain and simple.

Waiting is the worst. Wanting to get going and kill the cancer as soon as possible. Not knowing what is going to happen during treatment. What sort of side effects you will have. The list goes on.

Since you are doing surgery first, there will be some healing time before you start chemo and rads. From what I read here nearly all report surgery generates the least side effects and your recovery is the fastest.

Chemo and rads are far enough out to think about later. For the time being, just try to stay calm and learn about the surgery aspect now.

You'll do fine. Good luck, Don

Thanks, all! These replies help a ton. Ive done very well after surgery (11 days out now) and was basically a walk in the park compared to rest, I'm guessing. Ive learned so much on this site; I think Im just learning to balance how to read/learn with reading too many horror stories that add only to my anxiety. I just needed a little reassurance that I will get through it. If all of you have done it, and many more, I know I can and will. I really appreciate the advice re: intake, water, mouth hygeine etc and have already started to gather supplies. I agree with PaulB who discussed being prepared; it gives us a sense of control over at least one aspect of an uncontrollable situation.
Anyway thanks again and Im sure Ill be talking to all of you again very soon. As mentioned above, they will not allow Rads to start for another 2 weeks-ish so I have some time to be normal until then.

Laurie,

As others have said, everyone is different. I had RT, but no chemo, The radiation was focused on the right side of my mouth and some of my neck, so my treatment wasn't as bad as many who had their entire throat radiated. I didn't have the thick mucous that many have, and I was able to swallow and took all my nutrition by mouth (no peg). My main problem was the painful mouth ulcers and swollen tongue that started mid-way through treatment and lasted for months afterwards. So I was on a liquid, bland diet for a very long time, lost a lot of weight and was on pain medication for months afterwards because of the mouth ulcers.

Follow the advice others have already given you. Radiation can damage your thyroid, so make sure you have blood work before treatment begins to get a baseline TSH. Also, radiation can damage your teeth, so you should use dental trays for fluoride during and after treatment.

Best wishes!

The funny thing for me was that all the nursing staff and the doctors told me I sailed thru treatment and had the best attitude about it of anyone in the last couple years.

Me: you guys must be dipping into the patients pain killers.

Seriously tho, I had some really bad days, but I drove myself to every treatment except chemo days as they drugged me up pretty hardcore on that day.

I thought being young would give me a serious advantage, did not notice said advantage. I found the very last week of rads thru 4-5 weeks post treatment to be the seriously uncomfortable ones. I was on Hydromorphone at the end, never made it to the fentinal patches. and only took the pain meds after I got home from rads.

But all in all, I think you'll find that you can do it, just communicate well with your docs about pain.

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!

If I could add anything of value to Cheryld's wonderfully informative post I would just reiterate her advice to start treating the skin on day one of rads. There is no green light or red flag that will tell you when to start so start on day one of the rads. Unfortunately, I didn't understand that when I started rads so I have some uncomfortable burns that I might have been able to mitigate or avoid. Start your care routine on day one and you won't have to be adjusting in the middle of your treatments.