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Getting Ready for Radiation..

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Hi all, sorry its been awhile since my last update but feeling anxious and scared more often, can't sleep and getting very irritable with my wife and nurses, family, etc...it's more my own frustration on being dependent on others to do things for me and not at them. But feeling guilty as well. For the first time I feel less positive and more pessimistic. I don't like it. I am not normally ever this way.

I saw Dr. McGee, the Radiation Oncologist this week. Radiation typically begins 6 weeks post-surgery, so my radiation will begin on August 13th. I will go Monday through Friday for 6 weeks. The dose is 60 ray over 6 weeks, a total of 30 treatments. The Illinois Cancer Center is literally upgrading their equipment right now and it will be ready to use by the time it is time for my radiation.

They will be using intensity modulated therapy which allows them to shape the radiation to the patients need. Because of this new technology, they are most likely going to be able to protect my right salivary glands and not radiate anything that they don't need to. This is good news I think?!?!? When they do radiation they will radiate the incision on my neck, as tumor cells can track there as well. Because lymphatics can drain both ways there is a chance of cancer cells in the right side as well as left, so they will do a little there too. I will still keep my g-tube in until after radiation because I will most likely have sores in mouth and throat at times. I have a planning appointment on August 6th, the week before radiation begins. They will do a CAT scan at that time, which will allow them to better plan my radiation treatment. I will also be receiving IV fluid treatments to help with hydration and overall wellness during the radiation period.

My pain has been unbearable the past few days, and I went out to the IL Cancer Center to pick up some scripts for an increase in one med and another additional drug. That was a nightmare. The additional drug is new and no one in the area carries it except the pharmacy at IL Cancer Center, which his insurance will not let him fill at. Filling all these meds and changing them, dealing with four different docs has been a real pain to get everyone on the same page. Plus the pharmacy feels like they need to lecture me on what schedule the drugs are and that i know what im doing....Ummm yes, I have cancer, thank you, the doctors talk it over.

Sorry about the rant/gripe session tonight but very scared and don't really know if I should go through it at all.

Anyway just looking for advice and/or explanation of what I am facing.

Much Love

- Bob

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Sorry to hear about your pain. I'm past my treatments for the time being; my first post-treatment PET Scan is still more than a month off.

If you decide to have your Rx filled at the Center Pharmacy, still have them bill the insurance (even if you know that it will be denied). Then file a written appeal. It probably won't help; but sometimes there are pleasant surprises. I know it is almost impossible to fight the insurance companies at the same time your fighting cancer.

phrannie51's picture
phrannie51
Posts: 3680
Joined: Mar 2012

We've all been right where you are...in pain, scared, facing the unknown...and having to get used to being dependent on others...and yes...wondering if there is a point in pursuing treatment.

First of all...yes, treatment is worth giving every effort to...we have a high rate of survability, so it would be a waste to NOT go thru treatment. I remember going thru a period of time of being blase about if I survived or not...I didn't care. I knew that isn't like me and ended up taking anit-depressants...they helped a lot...this is a time in your life that you need to use everything in the arsenal! Anti-depressents work.

Be gentle with your wife...she is going thru this, too....maybe not physically, but emotionally, she too is scared for you, wondering about the future, wants to care for you, but this is new, and she doesn't know the in's and outs...

Radiation is an everyday thing...takes 20 minutes, is painless...you get used to your schedule, and soon it is routine......and then suddenly it is over. You will do fine, I know...tho I remember the anticipation of starting...and I was scared, too.

Just keep posting here, you will get so much support for how you feel, what you're going thru, frustration and pain....this is the best place to put that.

p

MarineE5
Posts: 748
Joined: Dec 2005

Bob,

I feel the concern in your post, I can relate in a sense. Your treatment path is much like mine was. After my surgery, neck disection, etc. I had to wait until my incisions healed up and I think that was one of the bad parts of all this. We tend to want to get into the fight right away. We now know what the problem is, now let's get going and kick cancer's A**. We get antsy waiting and our minds wander...

Once you start treatments, you will be focused once again. I am not sure if you have read the Super Threads that Sweetblood bumps up every so often, allot of good information in there.

Your path of treatment time is 6 weeks of Rad's which was mine also, but mine was during the Holidays, so it got broken up a little and it turned into 7 weeks. I am glad to hear that your saliva glands may be spared to some extent, mine are gone completely. Dry mouth for roughly 7 1/2 years now, but I work around that with Biotene mouth spray/ mouthwash and liquids.

Addressing your concerns about the sores in your mouth and throat. Baking soda and Salt solution was my ticket to keep a handle on the discomfort for me. 1 Teaspoon of each in 1 quart of room temperature water mixed up. Rinse and gargle as often as you feel you need to. I would do this as often as every 20-30 minutes in the later weeks of treatment 4-6 weeks in. Prior to that, I would only use it every 1-2 hours. In the later part of the treatments, I also increased the amount of Baking Soda and Salt to 1 Tablespoon of each. I would also spit most of it out, but kept a little bit to swallow and allow to hit my throat, it helped allot. At the time of my treatments, I was not told or heard of Magic Mouthwash, so that is another option available for you.

Med's- very important to stay ahead of any pain. I was given Nurotin/ Nurutin (sp)and I used it around week 4-5 and continued to use it for a week or two after my final treatment.

Hydration- This is very important in so many ways, yet many people over look this. We need to take in at least 64 ozs of fluid per day. When we are on Med's we can get constipated from them and that causes more problems. Use a stool softener, I was told to use the liquid form of Colace, an over the counter product found in your local stores. I used it every other day and it worked very good for me.

Nutrition- again, something that will cause problems if we can't take in the amounts we need to. I was told to take in 8 cans of Nutrin 1.5 daily. I was able to at the beginning, but found it more difficult in the later weeks and would force myself to get 6 cans in. At some point, we get bloated in the stomach between the intake of water and the nutrition cans. So, I kind of made my nutrition the primary fluid intake. There is a simple test we can perform on ourselves that I learned after all my treatments and I read it here. Pinch the back of one of your hands and if the skin stays up more then 5 seconds, you aren't hydrated enough. Our skin should return quickly to it's orginal position.

I apologize for such a long post, but hopefully this helps a little bit. Not knowing exactly what lays ahead can work on us. Please ask any question you may have, because someone here has traveled the same path you are about to take.

My Best to You and Everyone Here

ditto1
Posts: 630
Joined: Mar 2012

the bloody sheets. Bob my point in that introduction we all will have different times when we are upbeat and down. My 1st post you may be able to find in around late March or April 1st was Ready for the Fight, where I to asked if the fight was worth it and these folks let me know yes it was. I have had my good days and bad, I feared the Mask, Chemo scared me and just the overall progression of this scared me. But with the help of God, Diane,my family and these folks I have made it 3/4 of the way. Still have 10 RADS and 3 Erbitux to go, but I see the end of the tunnel people talk about. I also realize when tx is done we will not just wake up out of a bad dream and all will be well, but I have hope we will start to recover as so many on this site have offered us that hope and reality. So just know what you are feeling is totally normal.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

the fear and irritability are easy to understand--you're in pain with the Big C and the waiting around for rads to start is daunting. you've got every right to those emotions. (not so sure about the guilt.)
as mentioned above, the break between surgery and rads isn't doing you any favors--just more time to think and worry. but once you get into the plan, you'll have concrete battles to fight and the treatments will pass quickly. be a bit angry, and turn the anger into fight. be afraid, and be human. :-)

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Hi Bob,

Are you taking anything for anxiety? I dropped a Lorazapam before radiation and a few times to help me sleep, it works great and I thought I was normal and in complete control. Sounds like you need to buck up on the positives and kick the pessimism to the curb. Easy to say, harder to do. When you are positive, you don’t realize it and life flies by like everything is normal. When you are pessimistic, it consumes your thoughts and makes you feel wacky. Less wacky more normal.

Your treatment plan sounds good and better yet you sound like you understand it. You’ve got a whole team on your side to help you conquer this invader and you’ve got us for questions any time of the day.

I am sorry to hear you are in pain but I wouldn’t hesitate a second to take something for it. You want to stay ahead of any changes you are going through. Tell the nurses and doctors about any changes, pain or problems you have, they will more then likely have something for it. It is hard to predict what your symptoms will be or how bad, so why not take them one at a time as they come. This website had me so aware of swallowing problems that I started drinking water on day one and never looked back and I did and I am doing very well in the swallowing department.

Well, you have just over two weeks to rest up and get ready. When your pain is less, take your wife out for a dinner. Enjoy everything around you and don’t sweat the small stuff. You will do fine, I promise you everyone on this site will be with you all the way and help you to the other side.

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I know this sounds "hoakie" ...but you sound perfectly normal. I can relate to sooo much of what you just posted.

Of course I am sorry you have to go thru any of it. As crazy as this sounds, I was concerned I did NOT have surgery....all I had was Erbitux and radiation...you are getting more than I did :) At the time (not now) I was really frustrated bc I also did not get the platinum chemo drugs, just Erbitux.

I have a confession to make. Just last week my wife and I had a pretty good argument. I had to (and wanted to) apologize to her bc I was so grumpy. I had a flair up of pain and it got pretty bad (I'm 7 months past treatments). I think this high altitde where I live 5300 feet up and the super dry air as well as all the summer pollen and such has just wreaked havoc on my throat area (seems to me to be coming from above the uvula area ...it went on (and still is) for a couple of weeks and it just wore me down and I presume I was just really tired of hurting that day we argued (I did not tell her I was hurting).

Anyway ...I will also say this ...man you got your stuff together!! I still remember that post you did a ways back and you really had some good notes on your treatment plan...and you STILL do. You are way ahead of me when I started my tx...I did not know half of what you posted....I just followed the "little yellow brick road" they told me too :)

I can tell by you posts to like to do for yourself and you like to control the things around you (in a good way) ....but this is one of those times you will have to ask for and need help...you've given all your life I bet ...now let those who care most about you help..it will be good for them too. I think the week my daughter (13 years old) came down and stayed with me in the RV I had at the place of my treatments was good for her. Looking back it gave her a feeling (and it was true) she was helping her dad fight. Quite frankly I would come back from treatments and just barely get in the bed ..she would make sure I was tube fed my cocktail of nutrition ...bring me my pain meds and even just sit and hold my hand ....it was a comfort to have her there until my wife could take over (we have five kids and my mother flew up from Florida ..but until Mom got here my wife had to stay with the other 4 kids, ages 2-11) .

Sorry too for the long post ....but I sure feel your anx's in your voice and I just wanted to share I truly have been there and understand ....

You ARE doing the right thing ...you family needs you Bob!!!

Best,

Tim

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

and I'd love to do the same for you...any emotion fighting this poo-poo is allowed..sorry for the pain, ask your Dr for something your insurance will cover, my insurance didn't want to cover liquid oxycotin until I explained to my contact person, I CANNOT SWALLOW PILLS, then when I went to fill it, no one carried it except our local hospital pharmacy and those women looked at me, kept glancing at me, like I was a drug addict...I told my Dr about it and he laughed and said ignore them, maybe next refill I'll prescribe methadone :)

I for the first time ever am on an anti-depressent too, we around here call it my happy pill...good luck, you can do this!!!

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

No question about it, when you get that 1st scan following tx and it comes back NED, it is all worth it. I had to say I was sorry to my primary caregivers more than once. Caregivers have a way of understanding and loving you despite your difficult days. Like others, certain times I questioned if the tx was worth it. Today I can say, yes it was. Stay ahead of the pain. Try the Lorazepam.
God Bless

BarefootBob's picture
BarefootBob
Posts: 72
Joined: May 2012

Thank you all for your kind words, it makes me feel I'm not alone and also get the advice I feel comfortable talking to family about,

Two questions.

1: .they started me on oxycodine, is there a difference between that and OxyContin ? It is a small dose but pain remains the same. I think it is only 5 mg.

2: what will the lorazepam do for me? I don't want to have so many Jekyll and Hyde moments that I know my wife sees me going thru. I want to just maintain, or stabilize my attitude.

I know I will still get moments that are good and bad but they are starting to become more frequent.

Thanks for all your input,
Much love,

Bob

boardwalkgirl
Posts: 263
Joined: Jun 2012

I believe Oxycontin is the brand name for Oycodone. Oxycontin is typically a longer acting form and they do make immediate release oxycodone tabs I think

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I got ativan when I was vomiting mucous three times a night.
it did help me sleep longer than 30 mins. it also slightly affected my balance.
not sure if it did anything for my state of mind, but it's supposed to.

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

My ONC actually prescribed the Lorazepam for nausea but it is primarily for anxiety. I only take 1 at night now because it helps me sleep. The script was 1 to 2 every 6 hours as needed. So there is lots of room to adjust the dose that works for you. Hindsight, I slept through much of the nastiness of the radiation. They should give a script to caregivers too :-)Tiniest pill I ever had...you get really anxious when you drop one and can't find it!
What I read is oxycodone usually has tylenol mixed with it and is a slower release than oxycotin which is the more addicting form. The 1st is usually prescribed every 6 hours and the oxycotin every 12 hours. My doctor gave me hydrocodone. Also had the fentynl patch a couple of weeks. 25mg. then 50mg. which made my hands shake like I was 100 so I only did that 1 week. Gave up all the pain meds when I got ready to drive myself, not worth the risk of injuring someone else.

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Bob,

The Lorazepam is great. When I took one 1mg tablet (my regular dose) I thought I was totally normal and alert. If I took more I would end up sleeping all afternoon. Normally, I only took Lorazepam prior to rad treatments (1/2 hour before the mask). A few times when my mind was racing at bed time, I dropped one pill to get to sleep. I now keep a supply for CT and PET scans. I was very careful when I took the pill so that it would have peak efficiency.

The first PET scan I had, I freaked out and had my first panic attack. I made it through but from then on I had to use my little helper. For my first post treatment PET scan I dropped 1 ½ tablets and zoomed through the scan with ease (even feel asleep and snored a little).

If I had to pick my favorite helpers (so far) through this ordeal it would be:
1. Lorazepam (anxiety)
2. Magic Mouth Wash (throat pain and mouth sores)
3. Silver Sulfadiazine Cream (neck burn)

To be honest, the first indicator I had that I wasn’t as sharp as I thought was when visiting the nutritionist at 12 weeks post. All during treatments I would visit her once a week and always after rad treatments. At the post visit she mentioned how great it was to see me so alert (heck I thought I was always alert). I would have to say, the nonalert Matt was ½ rad treatment and ½ Lorazepam .

Today, I take nothing but an occasional Tylenol or Advil. I would be more afraid of the non medicated Bob, if I was a betting man.

Best,

Matt

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

got some last week for the oozing, crusty burn on my neck.
smearing that goo on about 5 times a day, does wonders. thumbs up!

phrannie51's picture
phrannie51
Posts: 3680
Joined: Mar 2012

I was prescribed it as an anti-nausea drug, and had to take it daily with the amifostine I had right before rads...ah, but it did me the biggest favor with the rads...I was so relaxed for them.

I only take 1/2 of one tablet, and that is all it takes for me to get to sleep at night or to relax before rads....just like Matt....it was a little wonder drug.

p

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