Radiation worries. In need of some major advice - Oral Cancer Support

So I'm post op, having a very small part of my tongue and my lymph nodes removed on that side. It's been less than a month aftermy surgery and today I found out my doctor/surgeon wants me to pursue radiation. I haven't gone to the consultation yet but I am terrified. Also they removed all my stage one cancer and my lymph nodes came back completely negative.
I can't really seem to find a clear idea of risks so I was wondering if you guys could share your experiences with me.
I worried about having permenantely dry mouth and losing taste.
They said its preemptive and more or less an insurance policy for it not to come back and that it's ultimately my choice and I just want as much information as I can get before I make a decision.
It's just devastating that I just started to get back to normal and might lose it all before I get it all back.

I replied to this on your other post.

This might help. Its from the main OCF pages.
Main OCF pages Radiation

John

My advice is to get the radiation because the major risk of radiation is not getting it at all and then having those microscopic cells left over from the surgery bring the cancer back. This risk of not having radiation more than outweighs any possible complications. Otherwise you will never forgive yourself if the cancer does come back.
Use the insurance analogy: you always insure what you can not afford to lose: your house and your life. Trust me, some dry mouth issues and potential taste issues (both of which often and regularly resolve with time for many here) would be the very least of your worries if the cancer comes back.
I know you are emotionally overwhelmed here (okay, I don't know that- I'm just remembering that I was when I was facing a similar choice to risk getting a second round of radiation past the "maximum"), but having to sip water and finding some things bland is most definitely does not amount to "lose it all" in my book. That will be if you don't get the radiation and it comes back.
I wanted to make sure you have a clear idea of the real risk: joining the recurrence club here
Charm

John, I second Charm, who has been around more blocks with this stuff than any of us.

My docs never left any room for doubt about rads after my neck dissection. They said it was essential to making sure that any microscopic cells were killed dead dead dead. I trusted them, and although it was tough, at the end of it my RO pronounced the loveliest words I've ever heard in my life: "You're cured."

Also: contemporary radiation, i.e. IMRT or even more modern modalities, is better and better at sparing healthy tissue. Mine was standard IMRT, and although I had a year or so of a very dry mouth, my salivary function did indeed finally come back to a degree that surprised me. I'd say 70%, just guessing. As long as I make sure I have a glass of water handy at mealtimes, I'm ok.

My taste was certainly affected, but long term I don't think the radiation was responsible for those changes (had a nerve or two nicked during surgery resulting in permanent tongue numbness, so that's what's killing part of my taste).

I'm not by any means suggesting that RT is easy. But the alternative CAN be worse. The insurance analogy is just about right.

Keep us in the loop, hey?

i lost half of my saliva glands,radiation effects are manageable. i would encourage you to go through it. my dry mouth has become manageable, with a cooler of water in my truck at all times. dry mouth is worse in hot weather when doing physical activities, but as you progress in recovery you can do more. i had dry mouth "attacks" and found staying hydrated before you feel thirst is a big help

Add me to the list! I agree with everyone else! I sent you a longer response in your first post!

My mother is facing the same decisions. She was diagnosed with Stage One Oral cancer in November. She had a spot removed from her mouth. Now that it has started to heal we are facing the decision of the neck disection. and radiation. She has decided to to get the surgery next week. I came here to read what people have to say and maybe learn more.. We are so scared.

Jodyallen, welcome! There is alot of info on the main pages also. When you are ready to post make a post under Introduce Yourself and we will be able to help you too. Best wishes with these difficult decisions.

Hey Jody - welcome I know you're scared... Cancer is a terrifying word... The one thing I do have to say is do what you can to stop it now - people some times make the mistake of thinking - oh it's only stage one do the minimum because we caught it early. Realistically, it's cancer - staging doesn't matter. Whatever they offer you to fight it, clarify, make sure it's within the NCCN guidelines, and educate yourself, then decide... The worst thing is facing a recurrence and thinking - I should have.... good luck!

Paul

Isn't it Time to update your signature line where you indicate a score of 2 for you and zero for the cancer? With 3 recurrences and the original bout, shouldn't it be 4 for you and zero for the cancer? I didn't count Dec 2012 because I can't imagine that in the beginning of March you know the cancer has come back and you would wait until December.
What treatments did you get for 4 bouts of cancer? I thought I was the radiation champ here with 97 GYs , so when you update your signature, give us some hints on how you beat cancer 4 times running. I read all your prior posts as well as the ones you put up today but did not see any details of the 4 TX, just kudos to caregivers and nice advice on dealing with life.
Charm.

Thank you all. I will be going thru radiation you all helped me get their this. I don't know if in the coming months I'll be able to come on here as often so if you'd like keep in touch, please send me a PM. I would appreciate anything while I'm down and out. You have all helped me so much. I'd love a pen pal.

I will have radiation for 7 weeks 5 days a week.

John, I wish you all the very best with your upcoming radiation treatments! I know its not easy but keep up with a minimum of 2500 calories and 48 oz of water every single day. This will help you to get thru your treatments easier. While you are waiting to begin, try your best to eat everything you can as yoiru sensse of taste will temporarily change. You will also want to get your hearing tested, your teeth checked and flouride trays made. Another thing to do is to get a complete blood test including thyroid. Dont worry! We will walk you thru the whole thing and be here evry step of the way to support you.

Best wishes!

Hi John that's pretty average for rads. Christine is right enjoy your foods now, bulk up, and all the other stuff. They will take you in to make a mask don't freak, they actually bolt you to the table... Just giving you the heads up. If you're claustrophobic you might need anti anxiety meds. They may also offer you a feeding tube. Don't put off rads too long... Hopefully it will happen ASAP. Hugs and take care.

John

Not bad at all, my first round was 8 weeks for 40 radiation TX.
URGENT: get a TSH blood test NOW before the radiation hits. The hospital can do it very easily since they are taking blood work all the time. You need the actual TSH number and a copy of the blood test. There is controversy over what is the right TSH level with labs having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back . Without my pre radiation blood test for TSH, I would not have been able to get the TX I needed.
Charm

Hey Charm
I don't understand the whole TSh thing. I know it is for thyroid, but as far as I know they never checked Kevin's. Maybe they did and we just never talked about it. I know this ignorance on my part, but why is it important to know a starting number?
Kathy

Kathy

It is not ignorance. I had to drop my MO and get a young endocrinologist who went to medical school in the 21st century before I could get the TX I needed. First, radiation today is designed to minimize harm to the thryoid so that is what the doctors assume since it does not happen to everyone. Remember that I had two rounds of radiation. But the basic principle is that your TSH level should be the same after the radiation as it was before the radiation. Unfortunately some doctors believe that it doesn't matter as long as the TSH level is "within the normal range".
What is even worse is that there is controversy over what is the right TSH level with the labs having a 5.5 or a 4.5 as okay on their result sheets even though all the professional associations of endocrinologists conbsider 3.0 as the highest acceptable level. Then I found an old blood test that luckily had my pre radiation TSH level which my new doctor agreed should be my level again. (Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. )

While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results.

Of course there could also be nothing wrong at all with Kevin's thyroid . But it worked for me.

Kind of had a break down this morning. Im not normally the type to get angry or yell but this morning it all came to a boil and unfortunately my mom caught the brunt of it and I don't know what to do.
I feel guilty because it felt good. It feels like I just exercised and have calming endorphins running thru my body.
It was the dentist that finally made me snap. I had to go to the dentist to get checked out because I won't be able to have dental work done for 18 months after I complete radiation. I wasn't expecting anything and once again was shocked beyond belief. I had 12 cavities in between my teeth and had to have them all filled in the matter of 2 days. And the dentist kept referring to radiation side effects as if they were items on a grocery list. Like losing my taste for a while was totally fine and ok and she kept insisting I'd have no spit ever again even though I told her multiple times the Oncologist said I would have spit. And it was like she, albeit not maliciously or knowingly, kept taking my last shred of hope and throwing out the window.
And this morning I just raged like a wounded beast. I didn't realize how angry I was and how scares I am and how sad I am and how hard I've been suppressing everything so I can carry on. But it all came out. And I doubt seriously that my mother will be speaking to me again or coming with me to further appointments.
I just want to disappear. Some days I get up and wonder what I am fighting for. I'll be left with the shards and pieces of the life I had and will be forced to pick away at the normal everyday creature comforts until I become a slave to my mouth. And I can't honestly say this is the life I want. How much more can I take? How many mOre simple things can be ripped away before I just give up. And how long before people stop wanting to play with the broken doll I've become?

So sorry you had a dentist with not common sense. I find it just horrible that they could be so thoughtless giving you all kinds of medical advice when it is not anything they would even be treating you for. Do not let one person who doesnt think before they open their mouth get you upset. Just consider the source of all that bad info. I get amazed at the ignorance of some 'professionals'!

Truth is everyone is different. If you have saliva problems down the road, then there are meds that can help. After doing radiation, you can have dental work done. You will just need to do the Marx Protocol which is 20 hyperbaric oxygen treatments (HBO) before having extractions and 10 after. Ive done them and its no big deal at all, just time consuming. If you need to have a tooth filled, you do not need HBO.

Im certain your mother understands what was the underlying cause of your distress. Moms just know. It sound to me like you have been holding so much inside that you burst. Many OC patients see a therapist and also many take anxiety meds. Even caregivers can end up needing help to deal with facing the cancer of a loved one. So if you feel like its too much for you then I would suggest you seek out some help. Dont ever forget we are here to lean on too. This forum is made up of the most kind people anywhere in the world. Its ok to come here to vent if you feel the need. Anger is part of the grieving process. It may sound silly but we all go thru this in various degrees. We all grieve the person we used to be.

Hang in there, you really will get past this rough period in your life. ((((HUGS)))) to you.

Oh my goodness! What an absolutely insensitive, unthinking person to have talked to you that way!! And good for you, John, for speaking your mind. The fact that you felt good afterwards means you were able to relieve a lot of stress that had been building up. Is that dentist associated with other dentists in the same office? Would it be possible to see a different one? Stress is the last thing you need right now so maybe if you let your doctor know how you are feeling, he/she can make some suggestions re meds or seeing a different dentist. Christine is right about your Mom understanding your outburst. My son had a rough time of it, too but we both got thru it and he is doing just great, now! I'm sure your Mom worries about you and if you think it would help, you could suggest she come on OCF, too for some support in getting thru the rough parts of helping you through this. It is such a rough road you are on but it will get better. Keep coming back here. There is always someone here to listen and a soft shoulder to lean on. Let us know what's happening with you.

Boy, John, sounds like you need a new dentist. What a horrible way to be treated! Radiation side effects are no picnic, but you can get through them, I am living proof, as are most of the people on this site. Try not to get discouraged; you can make it!

Charm, Just saw your comment back to me re: TSH. Thank you for responding. Sorry I didn't find it sooner.
Kathy

John,
Listen....people, even professionals, really have no business telling you (us) how you are going to feel or what you can "for sure" expect. First of all, has she been through it herself. Second, we are ALL different. There probably are a handful of folks on here that all share the SAME side effects. A few out of thousands. Please don't be defeated before you get started.
You do need to vent. WE know your peeved. We've all been or still are peeved, that's why it's so important to have each other. The things you are feeling and saying are very familiar to all of us. You can get through this and attitude makes all the difference in the world. It's ok to get ticked. Scream, like you did, say your sorry and pick up and move on. Before you know it you'll be done and a few months later you'll be amazed how well you did.
Please stay on here and yell all you want. We KNOW!!! We've been there.
Kathy

Hi John, I understand all to well what you are going through, it's not an easy thing to go through you're not alone. Everyone handles Rad treatments differently. I had 1/2 of my tongue remover & all the lymph nodes on the right side of my neck removed as well At first I had very very little taste and in time it come back. I had the rad treatments and I'm glad that I did, I am now cancer free.
It's not as bad as it may seem. For dry mouth I use water, hard sugar free candy, Biotine mouth wash , juice , lollipops to keep mouth from drying.

Hi John, I've not read every post in this thread, but your rant was brilliant.

First, if you've not already, just suck it up and apologise to your mom.....she'll understand, I think! It's the only thing you can do. Water under the bridge and all that.

Next, you appear to be going through a period of mourning for the loss of the life you had, that perhaps you took for granted. I can relate A LOT! There was a period of time that I really believed I wasn't going to make it. Not to scare you, and my darkest hours were probably mostly down to a rare bad reaction to the steroids they gave me along with all the rest, so you might sail right through.

But, don't lose the lesson.

You *are* alive. And *this* is your life. And you can chose to play the cards you're dealt, or not. Big tip; play the cards. You may as well.

I was just 43 when this broadsided me, and yes, it really did upset the apple cart, and in a way, took two years out of my life. Never ever saw it coming.

My train is back on the tracks. My life view is forever altered, but largely for the better.

Deep breathe, gather your people for support, you may need it. You may not, and I wish that for you. Good luck, and let us know how it goes.

-Seth

Hey John,

Caregiver here. Apologize. Share the words you put up here with her. I found them to be raw and real and moving. And consider that at some point in this she'll probably go off on YOU.

And the fact that going off felt good just screams to me that you want to fight. Great, that spirit will help you many times over as you fight off grief, negative thoughts and negative people.

And I must borrow the words of others here because I have not walked in your shoes............Don't give cancer more power than it deserves. It can't take everything but you can certainly give it everything, if you choose. Our situation is still very difficult right now on many fronts but I still love watching toddlers and piles of puppies. I'm still amazed by the ocean and in love with music. Modern Family makes me laugh. I give love and receive love. Buddy, allow yourself to feel oh so sad, if you don't you must be lying to yourself. Then scrap yourself back up and get back to the fight.

All the best

Thanks everyone. Things settled here.
I do feel like I'm a mourning the life I had. Why now? I have no idea. Between the diagnosis time and operation time I really had no time to digest anything. Now I've been given time and I think everything is just catching up to me.
I'm nervous. And scared. This is going to sound silly but I feel like the worst possible place cancer could have happened was my mouth. My whole life there's always been something going on in my mouth that has held me back. Between braces, a pallet expander, and chronic canker sores there has always been something holding me back from being comfortable and this is the cherry on top of that shit Sunday.
I just wish I knew how I was going to react. I know me. I know if my taste changes I won't eat and I'm thin as is. And I more than anything am not ready for my tongue to hurt again.
But I finally had something good happen and it happened yesterday of all days!
Allow me to share something positive for a change.

So I had a birthday party for a kid in my class to attend. So I went and had a blast even though I was surrounded by ten year olds. It meant a lot to the boy that I go. He looks at me like a big brother.
After the party I went with my family to visit my grandmother's grave. On the way back they were having a contest on the radio to win tickets to see sugarland. I knew they were coming and wanted to go but with all these bills we can't afford anything. So I just decides to call the number and not only did I get thru but I won! And the concert will be right after radiation is over. It gives me a goal to get to, something good to look forward to and it just felt so good to win something.
I guess someone up there decides I deserved a little sunshine on a day that started off really dark. But not without struggle! Lol. While I was on the phone I dropped the call twice and managed to get back thru both times. It was kind of a weird wake up call. That there is fight left and there are good things to fight for.

Wow, John! Awesome to hear how things developed. A day like you describe really makes one wonder if there really isn't a master plan someplace directing our steps and leading us on the right path. Looks like your wake up call pointed you in the right direction. So glad you found the fight in you! And how nice it was of you to go to the birthday party with all the 10-year-olds. I'm sure it meant a lot to your "little brother". and it sounds like it made you feel good, too. I'm so glad you are staying involved in life and friends and family. It really does help to soften the difficult moments that come by. Keep up the fight, John!

The loss of the life you had...boy, I can sure identify with that! I get so tired of my friends and family having to accomodate me when we go out to eat, even though I tell them not to. I do agree that the mouth is one of the worst, if not the worst, places to have cancer. Nobody really understands that except the people here. It sounds as if you ended up having a pretty good day, though. Kids can really help us keep things in perspective. Good luck to you!

Brain is the worst definately... And lungs too. And also bone cancers...

But I agree that having tongue cancer is a nightmare. Never had problems with my mouth and then tongue cancer shows up. Cancer was somethimg that wasnt a big worry to my family... What about now?

My worst sensation right now is to not have the ability to move my tongue through my whole mouth.

its kinda claustrophobic.

But i thank got to keep the hability to eat. And hope ill keep this forever...

Hi John sorry your dentist sucked... I get it - though I think in some way you needed to hear some of what he or she had to say. A lot if the time we jump into this thinking that the drs. Will tell us everything.. The truth is unless you've been there you generally don't know and frankly if they tell you everything you'd run screaming from the room and never look back. Radiation has major fallout in some cases... Some even the drs haven't seen (only another survivor might have experienced) that's why getting a clear picture of what MIGHT happen isn't necessarily a bad thing. It may save some major anxiety and fear somewhere down the road. Though I imagine he or she could have been more sensitive - mouth cancer does definitely effect our lives drastically though there are other kinds of cancer that offer less hope and are more difficult to cure. Frankly I would prefer never to have heard the words cancer cross a drs lips, but it is what it is. There is some loss of our former lives.. I hear you but the reality is - when you get through to the other side - and climb back up that steep slope, you will have survived, you may be changed you may be challenged but you will be here, and truthfully there are many others who never make it up that slope but fight like hell and would give anything to get there.. So my advice - cancer can and will kill you if you let it. There will be times through treatment where you will want give up and just die in the corner... There will be times where swallowing is impossible and you will hate your caregiver for forcing you to drink, eat, swallow, etc... The only person who can get you through this is you... Do you want to live? I mean drama aside, do you want to live - really? Then nutrition and hydration is of primary importance.. Even if it has no taste or tastes like dog crap, you have to eat it or use your peg, you have to get fluid, you have to rinse your mouth, you have to take your meds, you have to keep your mouth clean, you have to do whatever it takes to get up that hill. Then eventually you will get your taste back, and hopefully eat normally again (this has a lot to do with diligence and persistence - and forcing yourself to swallow, even if it's just to drink lukewarm liquids). I know that's brutally honest. It it's the truth. How you come out the other side depends on you - you can fight to Maintain your quality of life, or you can waste your energy fighting your caregiver. Ps your mom loves you and forgives you it's what moms do! And so glad you got your tickets !!! Definitely strive to go! Hugs and good luck.

John
[quote]I feel like the worst possible place cancer could have happened was my mouth.[/quote]
Doesn't sound silly to me at all. We eat, drink, speak, kiss, or sob with our mouth. Anger such as you feel is normal. I used a different metaphor than yours of broken doll but recognize the pain.
During my time of lashing out with anger, this song by Pink was on the radio. It seemed to fit
[quote]I don't know if I can yell any louder
How many time I've kicked you outta here?
Or said something insulting?
Da da da, da da

I can be so mean when I wanna be
I am capable of really anything
I can cut you into pieces
But my heart is broken
Da da da, da da

Please don't leave me
Please don't leave me
I always say how I don't need you
But it's always gonna come right back to this
Please, don't leave me

How did I become so obnoxious?
What is it with you that makes me act like this?
I've never been this nasty[/quote]

All I can say is that this all passes. At the time, I had not found OCF so I thought it was just a private hell. Now I know it's tortures are quire common. The knowledge that others had suffered as much or more as me with the same or worse issues and yet somehow had broken thru to the other side really helped me the second time around.
Keep the Faith
Charm

Well I'm almost half way thru my radiation and it has finally caught up to me. I'm exhausted and my saliva has thickened and my mouth is dryer. My tongue is so raw I can't really talk and I feel like I'm falling down the same black hole that surgery was. I feel like I'm moving 2 steps forward to take 3 back.
I'm trying to keep working but trying to teach without being able to talk is next to impossible and in so afraid I'll fall asleep by accident while watching the children that I'm stressing myself out.
I feel like an idiot. I don't know how I can keep working and be in this much pain and this exhausted. I'm worried that if I just accept the fact that I can't talk but everything else is working fine that my job might ask me to take a leave if absence. And I can't afford not to work. My family depends in me.
This is just so much worse than I expected.
I do have some questions that could really give me hope if answered.
How long after radiation did your mouth or tongue feel raw? Did it start to heal quickly or take a while? Anything the doctor can prescribe so Ill be in less pain that I don't know about? How did you guys manage? I'm waking up everyday and I'm in a panic. I feel like I'm reliving the first few days after my operation. I just wish my life was where it was 4 months ago

Hi there... I think its courageous of you to still be working but honestly you shouldn't be.

I get that your family depends on you but you are seriously ill and need to be at home focusing on healing. Aside from it being physically difficult, you are on chemo, which compromises your immune system. Working with children or in a crowded environment is just asking to end up in the hospital. Is there no way you can get temporary disability? I know I don't know your circumstances financially so I can't really comment, and definitely won't judge but maybe your family should be helping you rather than be depending on you at this time? Ultimately it's a big health issue for you to be working. If you're job was independent and at your leisure - where you could do it and schedule appointments around your health, then that's a different story since you probably wouldn't be as stressed or exposed to all those people (stress is also bad for you as you are already compromised by the radiation.) I never got to the point where I was unable to talk though it was uncomfortable for me to do so. I was also tired, and frankly from here on in it gets worse with the worst of it being the two weeks after radiation finishes. I was blessed in that I was never raw or had open sores though I did have blisters (un opened ) in my mouth - at least that was what my RO told me. It still hurt but not in a debilitating manner - even at my worst I only used pain meds for a week. But I was very fortunate... and apparently I'm not the usual.

The drs. can prescribe all manner of pain meds but I am not sure how they will effect you, so that might make working even less of a possibility. I finished my treatment in May (the 4th actually) last year and felt okay enough to go back to work the end of june-- but didn't until Sept as I had short term disability.

When I did use the pain medication it was a 5mg oxycodone, and all it did was make me sleepy. You really should be home resting...

hugs.

Saw my oncologist today and she prescribed me some pain killers and a mouth wash that numbs my tongue long enough so I can eat. In much better shape than I was this morning. Still unable to talk without being in excruciating pain so tomorrow should be interesting at work.

My goodness, John! - You really need to be at home. With your immune system down, you don't need to be taking chances with your health. When my son was at the point you are in his treatment, he was out of a job, but I just can't imagine how he could have been able to go to work. He had a bad time of it with radiation and blisters and not being able to talk. Is there no way your doctor could write a letter indicating you are completely disabled and expect to be for some time? I understand from reading others' posts here that you could apply online for SS disability and some have been very successful. I sure hope there can be a way for you to recover at home.

I just don't see how it is possible. My oncologist knows I'm still working and has made no indication that I shouldn't be working. If it gets worse i'll have to see what my options are. I do much better with working. I'm very attached to my kids. And if im home I know I'll wallow in what's going on.

Does anyone have any advice for how to apply for disability?

I think there's a section on the forum here that offers financial advice - I'm Canadian so I'm no help, my disability was through work, I received full pay for up to 55 days (the maximum amount of sick days I could use at one time) then they automatically switch us over to short term disability for 3 years.. I know you need a purpose but health wise it's not a good thing - all it takes is a cold and you could end up in the hospital with pneumonia.

Hi John....sorry I haven't been in touch lately! Listen, seriously, you are only halfway through, and I don't want to scare you, but the worst is yet to come. The last week of radiation starts to get pretty bad, then after you're done the next few weeks are the WORST. We didn't realize this and started panicking, then I joined the forums and found out what was happening was normal.
You can apply for disability online. Our cc helped me apply and sent it in for me along with all of Kevin's records. He was approved in a short while, but remember, it doesn't start until after the 5-6 month waiting period. They will go back to your last day of work as your waiting period date, I think, but not sure about that. I applied after our 6 weeks of chemo and in our first week of radiation.
Being with the kids and all their germs is pretty scary John.
I'm sorry to be the bearer of yuck news. Please don't shoot the delivery person!!
Thinking of you,
Kathy

You would want to check into what your employer offers. If you have been employed full time for at least one year with this employer you would qualify for FMLA for up to 12 weeks. It depends on your employer weather it would be paid or unpaid leave. Im surprised you havent yet discussed working with your doctor. Radiation tends to zap your strength and make you progressively more tired as you go on, plus your weakened immune system shouldnt be ignored. Working with chlidren while going thru treatments might be something you would want to rethink with the germ and disease risks.

How far into rads are you? Unfortunately it gets more and more difficult as time goes on when doing radiation treatments. The first 2 or 3 weeks after you finish will be the hardest ones.

You mentioned kids, are you a teacher? Im sorry there are so many newer members I sometimes have trouble keeping everyone straight. Please take a minute and update your profile so its easier to help you.

Hey guys. Talked at length with my mom last night. We are going to look into disability.
I'm just so very sad. I don't know how else to explain it other than I feel like i'm back at the first day this all happened.
Thank you guys for your honesty and letting me know what to expect. I'm the kind of person who needs to know what is coming well ahead of time. But it's so discouraging to know that the way I feel now isn't even the worst of it.
I just wish I could check out for the next few weeks until the pain stops and I can get back some normalcy.

Dont get discouraged! Its better to be able to be prepared. We are right here with you every step of the way. Check out the Financial tab, there is some important info there. Plus check on the main OCF pages there are many links for all kinds of other resources available to you.

Nutrition and hydration are the key to getting thru this easier. Every single day take in at least 2500 calories and 48 oz of water. This must be your primary focus before anything else or you will feel horrible. If you cant make it with the water, at the hospital they can give you fluids. You will walk out of there feeling like a new man after getting hydrated.

Best wishes!

I'm glad that you are checking into disability. I know that I couldn't have worked while I was having my treatments. I was fortunate in that I had a ton of sick leave accumulated (I never got sick until I got cancer.) and also hadn't used much of my vacation time for that year. Good luck, John, and hang in there!

Hi, John -
if you think about it, your job right now is successfully completing treatment and then recovering. Disability, your friends and family, and of course your OCF buddies will help to support you along the way. Best wishes plowing thru the bureaucracy, and keep posting!

I guess I could try to think of it this way.
Mornings are the worst. I wake up and I'm in excruciating pain because my tongue is swollen from the radiation and rests on my teeth which causes me to bite and rebite my tongue so I can't even move it. Eating is no longer something I enjoy doing. It has to be planned out. I have to numb my entire mouth and hurry up and eat as much as I can before I can feel my tongue again.
I know I'm going to lose weight because the foods I can eat even with my tongue numb are so few. A lot of foods make my tongue feel like its on fire or burning. I have been drinking those boost plus shakes which I can tolerate I just wish they had more calories in them.
But once I take ibuprofen and the Tylenol with codeine it's better. I still can't talk but my tongue doesn't feel like a balloon in my mouth.

I've heard everyone talking about how the end of radiation is the worst but could you guys share your side effects and reactions with me?

Hi John,
Kevin had a lot of what you are going through and just progressively got worse. Same stuff just worse. You will probably have tons of phlegm to be dealing with soon too. It's very thick and gaggy, but there are many remedies to help with it. If you aren't pro-active several times a day with rinses though, it will be tough. Kevin gargled with salt water (after the magic mouthwash), then an hour later he would do a half peroxide/half water rinse. That's wierd because it bubbles like crazy. I have heard MANY other things people have done, but will let others comment on those. They also have suction machines you can use at home.
Once the phlegm gets better the dry mouth sets in. You will want to have a beverage handy at all times. Especially next to the bed at night.
Kevin also got quite severe radiation burns on the outside of his neck. It was very gross for a couple of weeks. If this happens get an antibiotic cream called Silvadene (sp). It worked wonders.
Do you have any disability through your work? I would look into the FML too. How is your boss being now? Hope she's not being a jerk still.
Keep eating and drinking. Try scrambled eggs. Kevin ate those every morning because they slid down easily. Pasta with lots of butter worked very well too and will give you some fat. He drank tons of Ensure and tons of water. Hydrate John...hydrate, hydrate, hydrate!!
I know you may not realize this, but it seems you are doing great. You are still eating/ drinking on your own and really with minimal pain meds. You may have to get out the big guns soon. Kevin took Lortab. It is a liquid and worked almost immediately for pain. He would take that and the magic mouthwash and chug down some nutrition several times a day. He tried stronger things like the Fentynal patch, but they made him really angry. Never used a feeding tube. Well, I won't say never...he tried it a few times with some of the formula, but HATED it and refused to use it!! He did put the Diflucan in the tube though because it tasted so nasty. He took this along with radiation to prevent thrush. He also did a stool softener liquid in the feeding tube for the same reason. (taste)
Hang tough John. You will turn a corner for the worse yes, but then you'll know in a month or so after treatment you'll turn a corner again. Everyone I know wishes they could have just been in a coma the last week of radiation and the next 3-4 weeks!! You're not alone in that.
When I read your last post I wanted to reassure you that everyone on here KNOWS EXACTLY how you are feeling and have been there. Honest. For me I was watching Kevin, but I felt it right along with him as I sat helplessly by.
Hang in there...you can do it and we are here for support!
Blessings,
Kathy

Thanks Kathy. If it weren't for the fact my tongue gets so swelled that I bite on it causing these awful cut on my tongue I'd be ok. The mornings are simply the worst but I think I've figured that our too. I got up early. Woke my mouth up and slowly got it to work again and then took the magic mouth wash, drank a boost so I could take my pills then went back to sleep and woke up when everyone else did after the pain pills have time to work.

One question I haven't been able to find the answer to is how long after radiation treatments stopped did you start get better?

Most of us would begin to feel better about 2 or 3 weeks after radiation ends. I returned to work part time 8 weeks post rads. For many of us it was 2 steps forward and one step back for the first 6 weeks afterwards. The better your nutrition, the easier it will be for you to pull yourself out of the tunnel. Many of us would get the Carnation Very High Calorie as it has 560 calories per can. Thats probably almost twice what a Boost has.

If you want to order the Carnation VHC, it can be bought on Amazon. Go to the main forum pages. There is a green box that has OCF's Amazon link in it. Click on that link for any of your Amazon purchases. This gives OCF a 6% kickback. Any Amazon purchase over $25 the shipping is free. I think the Carnation VHC case is about $46.

You can also drink chocolate milk which is high in calories too. It will help to soothe your mouth. I also drank alot of Yoo-Hoo while undergoing treatments.

Well I know my normal diet never reached anywhere near 2000 calories. I'm quite thin.

And other food suggestions? Can u survive on the boost alone?

John,
If you are thin now, you really need to take Christine's advice. Kevin lost 56 pounds and 35 or so were from the last week of tx and beyond. He still has trouble maintaining and he eats anything he wants. Really, go for the highest calorie you can find, especially now while you can still drink.
It takes about 4-6 weeks after tx to really feel you have turned that corner and are gonna make it!
Calories John, calories!!
Kathy

John, most of us would not normally need so many calories during an average day. But right now your body is burning up calories faster than you can take them in. I know 2500 calories sounds like alot but it is not, it is the daily minimum you will need to get thru this. Even better would be to take in 3500 calories daily. Your body must have enough calories to fight not just the cancer but also the effects of treatment. I cant stress this point enough! I had no caregiver and I struggled thru the whole thing. I lost 65 pounds and ended up being hospitalized a few times for malnutrition and dehydration. I am trying to help you to avoid these mistakes. You do not want to get stuck in the hospital!!!!

I lost 65 pounds in 6 weeks and it never went back on even when I finished and would take in 6000+ calories daily. I would make huge chocolate peanut butter milkshakes which were 2000+ calories each, I would drink 2 or 3 a day. Here is a list of easy to eat foods which should help you to take more things in. Try canned peaches, they will slide right down. Let me know if you want my recipe for the chocolate, peanut butter milkshakes.

List of Easy to Eat Foods

Christine
is the recipe for chocolate peanut butter milkshakes around somewhere?

Alex can tolerate chocolate flavours and used to love peanut butter although because of its texture and stickiness we have not even considered trying it with his swallowing issues. Of course we haven't considered putting it in a milkshake either.

John of Arc - yes you can survive on boost drinks alone - provided they are the high calorie, full meal supplement type. Alex has been taking Ensure Plus (or other brand) as almost his sole source of nutrition for the past two years. Like you, he was thin to begin with so his failure to eat during treatment became an emergency and he was admitted to hospital for 10 days. Trust me, you want to avoid that, and the way to do it is pay attention to Christine's post about taking on all the calories and fluids you can manage.

Like you Alex can't understand why 2000 calories isnt enough because he was never a big eater and managed to survive on 2000calories or less BC. He is a smart boy, but still manages to fail to grasp the concept that if he is not gaining weight then he needs more calories

Good that you have worked out to get up early take your meds and then go back to bed and wait for them to kick in. Alex also used the same strategy. Works to avoid nausea and vomiting too if you have that issue? "Waking up twice" seemed to improve his overall demeanour and ability to cope with the world too. It was nice that he was able to see the bright side while watching me get up and shiver my way through the shower at some ungodly hour in order to go make a living. He usually got up just before I headed out the door and had a cup of coffee with me (well, I had the coffee - he waved his about until it was stone cold).

3-4 cups chocolate ice cream (850-1130 calories)
1/4 cup choc syrup
1/2 cup peanut butter (750)
2 scoops dry Carnation Chocolate Instant Breakfast powder
2 cups whole milk (300)(add another cup if like a thinner shake)

Blend until super smooth. Top with some whipped creme.

You can even substitute one cup of whole milk for one cup of 1/2 and 1/2 which will boost the calories even higher.

I think for now until the swelling in my tongue goes down and I stop biting it causing sores boosts are the only real option for me. I can gulp them down pretty quick.

Has anyone ever tried aloe juice? I think my tongue is slightly burned from the radiation treatment and almost all foods just feel like my tongue is burning. I was wondering if the aloe juice would help with this?

John look up manuka honey under searches. It may help if you have any question pm me... Chocolate is acidic and ice cream at this point will likely hurt because I was very sensitive to temperature it may be e same for you. Chug away I survived on high calorie ensure and boost. Hugs!

What I'd like to know though is why everything but the boost shakes makes my tongue feel like it is burning. Is it because my tongue is "sun burned" like they said it might? There are so many things I'd eat if I didn't have to be in pain to do so

John, radiation sucks brotha and will burn the hell out of your tongue and cause pain. It could also be thrush which is common, talk to your Dr to see if it's thrush and they'll give you meds for it.

Magic Mouthwash will help, also maybe up your pain medications or just stick to Boost. Citrus (acid), pepper, vinegars bases etc will hurt and anything with them in it will hurt, but it won't last forever my friend, just a process.

Keep hydrated, drink lots of water as we've noticed those that focus on nutrition and hydration have less severe side effects. Focus on high fat/protein intake through treatment (add protein powder and olive oil to your boost) and stick the hydration brother.

Take a deep breath, focus on what you can control which is your attitude, hydration and nutrition.

Keep plugging in here John, we're here to help as we can my friend.

Eric

Thanks erikS. We found something nestle makes to put in food and it double the already high calories. So looks like I'm just going fo have to keep on keepin' on with the boost until my tongue heals.

John,also really make sure you get enough water in. Even if you think you've had enough, get some more. As Christine and Eric said, hydration is very important and will keep some of the nastier side effects away. I "ate" a lot of crushed ice...not ice chips because they have sharp edges, but sno-cone type of ice. My hubby would just put cubes in a ziploc baggy and smash with a hammer. I went thru liters of water that way and kept my swallowing muscles working and it was much easier than actually sipping water. good luck to you. Keep up the good fight.

and add the Manuka... that was a good tip from Cheryl that I used as well...it soothes the hot spots on the tongue. I would take a mouthful, keep it on my tongue as long as possible, then just spit it out. it really did help.

One thing my drs told me was to rinse with the baking soda and salt mixture, they also said that if I wanted I could take club soda let it flatten at room temp, and then rinse swish and drink. It acts the same as the baking soda mixture, but since you drink it it helps heal and sooth all the way down, and is a fluid so it helps with dehydration.

If you can try buying a protein powder and add a scoop to one of your boosts. It will help you increase your protein, and calories as well.

Good luck... you can get through this.

We found this stuff nestle makes that you add to anything. So I'm now getting 650 calories out of one boost shake.

Ps- half way thru radiation today!!!!!

Awesome congrats on both accounts...

John,

You are probably talking about Carnation Instant Breakfast VHC (Very High Calories). If not check that out as well. You have to order it either on line or thru a pharmacy like Walgreens, CVS but you don't need a prescrip. I found that stuff over 5 years ago and I talked about it sooo much on this forum that you would have thought that I was getting a kick back.

So after a discussion with my mom we both came to the conclusion that I couldn't work any more. So we started the temporary disability ball rolling and a miracle happened. My boyfriend started an online fundraiser for me just on the off chance that someone would donate and bam! Enough people donated where it doesn't even matter if the temporary disability kicks in or not.
After today 8 treatments left.

That's soooo awesome! You can do it!

That is really good news! Good for you and your bf!

Congrats John. Thinking about you!!

Had a relaxing day. Tomorrow starts my last full week of radiation and then after next week I have 3 more and I'm finished.
Yesterday wasn't such a good day.
I do have a radiation burn on my neck.
Here's hoping the next week and a half goes by smoothly. I'm so sick of eating only boost shakes.

For the radiation burns, your doc should have prescribed some heavy duty creams. I used beta-val cream, other have used aquaphor or some other ones. Pat the cream on gently, never rub it in. After bathing pat the cream on and let in soak in. If your neck is oozing, its still ok to put the cream on. It should be left open but its ok to gently place a non stick gauze pad on top of the cream, tape isnt necessary. You can put cream on right after rads but never go into rads with the cream on as it could interfere with the radiation treatment.

Oh we're treating it but it's still bad. It's like the entire side of my neck is peeling and the other side is covered in scabs. We're using aloe and aquaphor.

On a slightly different note did any of you feel like your entire mouth was on fire?
And I know a lot of you said the last 3-4 weeks when you're done with radiation is the worst. Can you describe?

You need to try Carnation Instant Breakfast VHC which has 560 cals in that same small can. Must either get it on the internet or through a pharmacy like Walgreens/Cvs/Walmart, etc but you don't need a script. Makes a huge difference when you can swallow less and get the same calories each day.

Yes for me I was very blessed it was only a week or two... I think it depend on your tolerance for pain. Mine was burnt and red much like your neck. I did have blisters thankfully they didn't open up. At its worst for about 5 days I would pop an oxy, wait for it to kick in, swish with magic mouthwash - then chug my ensure and snooze the pill off.... Hugs you're almost there!

I just looked in the mirror. On all sides my tongue is covered in sores. Even the magic mouth wash doesn't make it feel better. I have to swish chloroseptic.

I sure miss being able to talk and chew. I can honestly say I don't remember clearly a time when my mouth wasn't in some kind of pain.

And as for the carnation instant breakfast I don't need it. What I've been using has more calories. I use a boost shake and this stuff called benacalorie. Mix together and you have 650 calories per shake.

Well Benecalorie is an additive made By Nestle which is the same company that makes the Carnation Instant Breakfast VHV so instead of buying one product and having to buy another product and mix them together you can get the same amount of calories by buying this one product. JM2C's

The burning in your mouth can be soothed by drinking chocolate milk. At least that worked for me. I also would drink Yoo-Hoo, it was cold and felt soothing to my sore mouth. Good luck!!!

[quote=John of arc]I just looked in the mirror. On all sides my tongue is covered in sores. Even the magic mouth wash doesn't make it feel better. I have to swish chloroseptic. [/quote]

John - did you see your dentist before you started treatments? Did they make you fluoride trays? My RO had me wear my trays (sans the fluoride) during treatment. She said that any amount of metal in my mouth (which I have little) is what could cause the sores on the side of my tongue and the fluoride trays should help shield that a little bit. Just a thought! Mine was pretty bad and I absolutely know your pain.

It gets better. I promise.

Hi John,
You also may want to talk to your RO. It could be thrush beginning. Kevin had some issues and they put him on Diflucan for the rest of radiation. It cleared up and he never had the issue again.
As for the burns on the outside, Silvadene cream is the bomb!! It's a prescription. Good stuff!
Kathy

My dentist removed my metal fillings and replaced them with non metallic ones prior to radiation and he also fitted me with the trays and I started using them with Flouride 1 month pre Tx. That was 6 years ago. My dentist also came by my house (never called or asked him) 3 times during and post Tx to check on me and look in my mouth. GREAT GUY and he also has volunteered at all of my Oral Cancer Screenings. Kinda got off the topic.....

One thing I hear constantly but never explained in detail is the 3-4 weeks after.
Does it continue to get worse for 3-4 weeks after? Or are you at a stand still for 3-4 weeks before it starts healing? Or does it take 3-4 weeks from the last treatment to heal. I'm just so confused and would like to know what's coming.

I answered this question in your other posting. As for the mess on your tongue it's very normal. Have you been drinking flattened club soda or swishing with the baking soda mix?

Take care.

Yeah. The baking soda and salt water mixture. I don't know how or why but it works really well

Its non acidic and helps sooth and heal and mimics your natural body fluids.

Finished my radiation treatments. I have not lost my sense of taste and my oncologist said I would have that it won't be something I lose as the radiation keeps working.
Today was my first day without having to go to a treatment during the week. I had a paycheck at work to pick up so I had my mom drive me to pick it up and my co workers were just as cold and calus as ever. I was completely ignored by 1 of my co workers and not even asked how I was by the others.
I'm hoping in the coming weeks I can talk again without being in pain. The tip of my tongue feels raw and almost like its cut most of the time.
How long before your pain level decreased?

Geez you have some wonderful co-workers there. I do know that some people are profoundly uncomfortable with those of us who have a serious illness and some say some really stupid things. But for everyone to ignore you seems a bit odd to me.

Everyone is different with radiation pain. I was told that a few weeks after treatment was over I'd start to feel better. It was about 3 months for me! I was ready to cash it in. But I finally started coming around and have no pain anymore. Nothing is truly normal but it's good enough. You didn't lose your sense of taste. I lost mostly "sweet" taste but can taste salt fine. Mostly things are bland.

Keep hanging in there and let time help you.

Oh gosh! 3 months! How did you survive?! Were you able to speak?

Has anyone else experienced the tip of the tongue thing?

John,

I hope what I am about to say isn't what you experience BUT most of us don't even "walk out of our tunnel" so to speak until 2 to 3 weeks post TX and that's when we finally think we will start to get better. Even then we will have a few good days followed by some bad days and I mean BAD DAYS but over time the good days win out over the bad days. Your body has been poisoned and radiated with some of us taken to the brink of death so on average our recovery from this ordeal can take every bit of 2 years. I was weak as a kitten for a good 4 months post Tx. I didn't gain a pound my first year post Tx and I was consuming at least 3000 cals a day so that tells you how much energy your body needs to heal itself. My taste and saliva came back in spurts at 4 months, 5 months, 15 months (the biggest improvement) and 24 months (the last remembered improvement). My first year was pretty dark but the 2nd year was pretty much returning everything to normal.

Please don't expect too much right now. Your body will recovery when it does. I just don't want you to get frustrated thinking that now the rad is over things will pop back to pre Tx normal. Ain't gonna happen...you will reach a new normal over the next 2 years and hopefully it will be close to your old normal.

Re your co workers. Probably scared that it could happen to them. Creaps for sure but that's the only thing I can think of.

I would echo what David has said. I am nearly three years out and I still have eating issues. Also, speech issues at times. Yes. It is frustrating at times, especially on social occasions that involve food. (and in our society what social occasion doesn't involve food). You will find your new normal, however, and things will gradually get better. It won't happen overnight, but it will happen. Your co-workers do sound like a bunch of jerks, but i agree that fear might play a large part in their behavior. My friends and associates have been great, but I do imagine that since I do look pretty good, they often think that I should have put everything all behind me. To be perfectly fair, I have to admit that I didn't know anything about oral cancer until I got it, and had no idea what the treatment and recovery was like.

Thank you. I'm beginning to notice some differences already believe it or not. My appetite has returned. It's faint but there. And I now know what you guys mean by good days and bad days. Yesterday a bad day hit me out of no where. My tongue was in excruciating pain. Today was much better but yesterday came on so fast I was scared that it would happen again I didn't go out today.
I don't care about eating. I want to talk without being in pain and in those moments when my tongue is completely numb I have no speech problem. I didn't after surgery either. If I can talk and sing again a liquid diet is fine by me.

On a more positive note I had an angel sent to me today. I posted in the pet section on Craigslist talking about my situation and asking for help in providing supplies for my beloved hamster babies. A woman answered it today. She brought me a huge bag of bedding, food, and treats. It really eased my worries.

I have mucositis. When that clears I don't see how I'll have any trouble eating or talking.

Just remember that dry mouth follows the mucositis...not to be the bearer of bad news. Just to have you aware of it. That made it hard for Kevin to talk for any extended periods of time. He also has a bit of trouble singing, but it depends on the day.