Today was Rad 18, so I am now on my last half. Actually, if they keep getting good alignments, I just have three weeks left (15 more rad sessions). Wish I could hold my breath for ten minutes

I have been hoping to make it to this weekend without major issues and unless I wake up tomorrow with a problem, except for totally haywire taste buds, I have

My throat has really improved and I can eat about anything again. Unfortunately, it all tastes so bad. Yesterday I was munching on a sugar cookie and sipping an Ensure, but they tasted so bad I finally just dumped the Ensure down the tube and tossed the cookie

I must report; I have finally been Assimilated into the PEG Borg Collective!

Still no mouth sores, but my neck is really burnt (no open sores yet). Everything I have tried to put on it seems to sting. I have read about a cream called Aquaphor � any users?

Any other good suggestions?

Don:

I was given aquaphor when I went thru radiation. It was kinda like petrolium jelly and didnt seem to work for me. I then got prescription cream called BetaVal cream (Betamethasone Valerate). That stuff worked the best for me, there are several different kinds the docs will suggest.

Welcome to the world of PEG users. I sure wish we both werent part of that group. Ive had mine for 1 year already.

I used Aquaphor like it was going out of style from day one. I never let my neck dry out except for when I had treatment. I would wash it off in the morning before treatment and then put it back on when I got home from treatment. I'm still using it. My neck fared quite well through treatment - it got really red and a little gross looking the last week, but it healed really fast. Now that I'm out of treatment, I clean my neck with diluted hydrogen peroxide and then slather the Aquaphor on it. But I'm sure there are better creams out there especially since your burns already hurt, ask your RO or your nurse, I'm sure they would love to give you some options (maybe get a small tube of Aquaphor to get you through the weekend).

I think the worst part about the neck burns was how hot my neck stayed all the time (it made me sweat!) - anyone else have that problem?

I remember getting to the half way point and being so antsy and ready for it all to be over! It seems like it takes forever but it goes fast! Make the most out of your PEG tube while you have to (but keep eating and drinking by mouth as much as you can every day) and then get rid of it as soon as possible!

My suggestion is to not be fully assimilated to the Peg. You better keep swallowing every day as often as you can or you will pay a hefty price later. I am convinced that I don't have any swallowing problems post Tx due in a great part to me being forced to swallow since I didn't have the Peg to fall back on.

I used aquaphor continualy amd I was healed up good after the rads and chemo were stopped inside of 2 weeks. It worked wonders for me but like you I didn't have any mouth sores from it. I hadenough trouble in there from Rad seed implants in my tongue.

I got a jar of the aquaphor. Thanks for the recommendation. It is messy, but it seems to be working and doesn't sting.

I'm already well cooked, but fortunately no neck wounds yet.

Saw one of my RO's today and he said they now want me to go the full 35, so that means three full weeks left (15 more rad sessions). Not having a primary tumor site to shoot at, they have gone back and forth from 33 to 35 sessions.

David,
My mouth is still in pretty good shape and I am chewing gum and drinking lots of water (despite the peculiar taste), but gave up on food - everything just tasted too foul, lost my appetite and was beginning to lose weight.

They don't want me to lose more than a pound a week (if any). I seem to tolerate the formula just fine (but burp a lot).

Hope Margret is OK. With just 4 to go she can likely see that end of radiation road now.

Don:

You are doing great!!! Glad you are still drinking water, the more the better. Make sure you are also keeping up the calories, minimum 2000 but try for 3000 a day. Glad to hear you are able to chew gum even though you arent eating. That will help your jaw muscles. Are you doing any jaw exercises to stretch you jaw muscles? If not might want to check with one of your doc's or nutritionist. A few exercises now could prevent big problems later.

Keep up the good work

Hi Don! Thanks for the thought

Just finished my final chemo infusion today, and yes, only 4 rads left to go! I'm in surprisingly good shape, no blisters or sores on my skin, but my mouth and throat are a mess. I think I'm gonna have to start taking more pain meds. Thanks to my PEG, I haven't lost any more weight and I'm staying well hydrated. The biggest struggles I'm having are being just flat-out tired and the horrid secretions/mucous. Last night and this morning I gagged so badly I threw-up and I prefer NOT to make a habit of that.

The end of the road is definitely in sight though and for that I am most grateful.

Margaret:

Hang in there, you are almost finished. If the mucous gets too bad ask your doc about a portable suction machine. Try taking robotussin to help with the mucous. Also the water with baking soda and if you can tolerate it salt rinse helps too. Rinse as many times a day as possible. Keep up the great attitude

Christine,

I'm already doing the Tussin and the saltwater rinse (I can't use baking soda though because I'm oddly allergic to it if I use it topically). When I wake up in the morning and before that last dose at bedtime is when it gets bad. I did talk to my nurse practioner today, who I adore, and he also talked about staying hydrated to combat the problem. I guess I really just need to stay in front of it.

I so don't want to have to get a suction machine

You are almost done Margaret! Keep it up! My mouth sores really kicked in the week after my radiation ended and I definitely bumped up the pain meds and got some morphine and kept on top of it. I remember just balling in my doctor's office because I was just so sick of the ulcers and the mucus (and it had only been a couple weeks! I'm such a pansy!) I only have one or two left and I'm not quite two weeks out from the end of treatment. The mucus has subsided but I have the stringy nasty saliva which is driving me insane. It coats my mouth so I am constantly spitting it out and I can't wait until it calms down. I throw up most mornings from gagging on it (but I have a really sensitive gag reflex). My saliva was kind of similar to what it is now after my surgery so I'm hoping when I start eating a lot by mouth it will get better. You are almost done and that's really exciting!!! Hang in there!!

Margaret you are getting thru this so much better than I did. Im always happy to see people who are able to keep up their hydration and nutrition, it just makes it so much easier on them. Keep up the good work.

Margaret,

I think you're doing fantastic.

Don,

Do what you can to get the water and calories down the hatch BUT keep swallowing during each day.

Bad Omen again!
Tomorrow is Friday and I have 13 rad sessions to go.

I know when I had my 13th, that was also a Friday - so perhaps tomorrow is double jinx day -- sure hope not, but life is sure starting to get tougher every day!

Saw my ENT today and he warned me of real bad things lurking out on that last third of Radiation Road -- now just two "rad" away. Sounded like hords of hovering dragons.

I hope Margret is OK.

Don:

It was nice your doc warned you about the rough part still coming up. You have come this far, you can get thru this. Keep up the hydration and nutrition, it will help make it so much easier. Hang in there.

Don,

I think you have to much time on your hands?

Don,

I am so close I can taste it!!

Actually, tonight I'm spiking a fever - ugh! Talked to my MO and she called in an antibiotic. My blood work was nearly perfect on Tuesday so she's not too alarmed, but if it hasn't gone down by Monday, we'll have to take a closer look.

Other than that, the fatigue has really caught up with me (although the doc suggested that could also be from whatever is causing the fever). Generally, I'm feeling a little like I got run over by a freight train. I cannot wait for this part to be over and for the healing part to start. My birthday is next month and I'd like to be able to celebrate it at least a little bit.

Margaret!

You are so close! If it's any encouragement, I went out to dinner tonight (at a REAL restaurant) and I had some fish and sauteed mushrooms - two weeks out from treatment (I can taste everything except for sweet, so I had to pass on the desserts). So there is definitely hope for you to be celebrating your birthday in a month!!! Finish strong and I hope your fever goes away soon and get some rest!!!

Stephanie,

That actually is a huge encouragement!! Are you taking all your meals by mouth now? (I can't remember if you have a PEG or not?)

My mom has found a local farmstand and has been eating fresh corn on the cob every night for dinner and fresh tomatoes. I'm so jealous...

Stephanie
Two week out and going to restaurants! Wow you are so un-real.
That must be Olympic Gold! I am eating some food again. At first it seems to taste normal then foul (so I swallow quickly).
I have sweet and occasionally munch a sugar cookie.

Margaret my dragon slayer
I so envy and admire you and dread having to face the rest of radiation road you have traveled so bravely. I know with 12 more to go that I will break big time and will be lamenting on the forum. But, it looks like this will be another decent week-end for me (with some help from Aquaphor and Biafine).

Victor was online for a while; running 10 behind me, but I haven't seen him all month. I hope is OK.

Come Monday, I think it is only me and him on this hard road and I hope it stays that way

I'm not yet doing everything by mouth but I'm working on it! Basically I'm doing less by PEG and trying to eat what I can at meal times - I get full really quick since I'm not used to having food in my stomach all at once (I've been on the feeding pump for about 3 months or so now). But I eat some fruit and soup every day (I started two days ago) and tonight I went out to eat with friends. I tried drinking the formula at first, but it took me forever and it made me super full all day from one can - not to mention it tasted horrible since I can't taste the sweetness in it, so I scratched that idea. So I'm just doing less by the PEG as I do more by mouth and eventually I'll get there. I still have trouble with spices and stuff (I have some of those pesky ulcers left), so I guess I just need to start doing some cooking around here to make it so that I can eat it!

It is those "pesky ulcers" that worry me.

All this week it has felt like they were trying to erupt. Fortunately I made it to the week-end, but just barely.

Next week I think they will get there way with me

It might be nice to have a pump. I get tired of slow "gravity feed", and I think they put my PEG hole in too low. It is hard to get more than a can in at a time.

I'll add to the good advice above to keep swallowing as much as possible and to stretch your jaws open as much as possible -- It takes a lot less effort to keep these areas functioning than it does to restore function to them.

Don - how's it going so far this week???

Margaret - you're done, right??? Yippee!!! How does it feel???

Hey Stephanie!

Yes! I'm done. Today was my first day off, other than weekends, of course, and it felt pretty good. One slight complication, I've developed shingles on my scalp, which has been a little painful - but I'm on meds for it so it should clear up. The RO thought that was probably what caused my fever spike on Friday night. My tongue is very swollen and the mucositis is pretty bad, but I'm sleeping a lot, trying to stay hydrated and letting my body do the healing thing.

How are you faring?

Margaret!

I'm making it. I've stopped using my PEG tube for feedings so I am obsessively counting calories and it's driving me nuts! I bought a scale today to make sure my weight doesn't drop. Since I stopped the tube feedings my appetite has increased but it's just frustrating when it takes so long to eat! That's the worst part, well that and not being able to taste sweet! I have a cat scan tomorrow to check on my PEG tube because it has really been hurting me the past few days and it's kind of swollen around it so they are going to check on it and make sure there's not a fluid build up around it or anything else wrong with it. I'm hoping to go back to work after Labor Day - it's not strenuous work at all, just office stuff - it will give me something to do!

I hope your shingles get better soon!!! The mucositis will get better, but it'll take a little while. It's crazy - almost overnight one night you will notice a big difference. I still sleep a lot! I sleep until about 10 every morning and then most days I take a nap.

Radiation Road is awful lonely now, but I am so happy for Margaret.

Am I the only one left?

Nine more to go (week six).

So far not much change since week four(when my taste buds bit the dirt ) except for a big bald spot on the back of my neck!

Today they changed my program since some of the fields are done and now the time being zapped has been cut in half.

I can't really tell much difference yet, but maybe with less zapping I can slip through without any of those "pesky" mouth ulcers or "heavy" mucous, but just in case I have my Lortab, Lidocaine and Robitussin ready!

I know that last week can be a killer!

Wow Stephanie! I'm impressed that you're off the PEG. That gives me something to strive for! Hasn't it been less than three weeks?? So other than sweets, your taste is pretty normal? Wow wow wow!

I think my secretions are actually getting worse this week and my mouth is pretty beaten up. I think I will start trying to sip some broth or thinned soups in the next couple of days, though, just to see how it goes.

Don-

I'm sure there are others still in radiation, they're just not as chatty as we are

Hang in there, buddy. It sounds like you're doing pretty well.

Don- I too am sporting that bald spot on the back of my head except I have a little bit of hair to cover it up - not much because my hair is pretty short. And I doubt you are the only one right now! But hang in there because you are almost done - 9 left! Then we'll have to move out of the "currently in treatment" forum.

Margaret - I'm not officially off the PEG - I have to make sure I'm not losing any weight before I make it official - but I'm definitely not using it right now! I am three weeks post treatment tomorrow and I stopped using the PEG this past Sunday by accident (I went out to lunch and got stuck out shopping with my parents and just didn't feel like "plugging in" so I ate dinner and stuff and I enjoyed being free too much to "plug" back in after that!)

Margaret,

Normally it is nice to know if you break down that someone is on the road behind you.

But, in this case if that happens you and Stephanie will just have to toss me a rope and drag me in.

The hair on the back of the head will grow back but it will take at least a year. At least we can't see it.

Wow,
I had no idea it would take that long

What about the beard?
Everything below the jaw line fell out after week three and now the cheeks areas are patchy.

My whiskers never came back below my chin which is about the only positive thing that came out of the radiation. The whiskers above my chin first came back darker and heavier then settled back to pre Tx normal.

Don-

Another week down...how are you doing? Hanging in there???

[quote=davidcpa]My whiskers never came back below my chin which is about the only positive thing that came out of the radiation. The whiskers above my chin first came back darker and heavier then settled back to pre Tx normal. [/quote]

In my case, I had a beard for over 30 years (For two reasons; primarily I am too lazy to shave every day and secondarily for the amount of money I saved on shaving supplies over three decades) -- I still have my goatee and mustache, but the rest has gone.

Pete,
The only significant beard areas I have left now are also goatee and mustache.

I am OK with that, but I really dislike the bald spot on the back of neck. Maybe I can let the higher hair grow longer to help cover it.

The bald spot will likely fill in this is just the exit radiation.
Give it some time (couple of months).

At this point my sideburns have filled in again (a la Elvis). It is just fortunate that because of the radiation field they are at least symmetric. Everything else with exception of one spot is (still?) dead. The exception is a small patch right under my nose. Not the type of mustache I want!.

M

Stephanie,
I guess I am doing pretty good.
My MO said last week he very rarely has a patient do so well this far along.

Just seven more zaps left now, but as you know the bottom can fall out in that last week.

I developed laryngitis and coughing spells but I don't have much of a sore throat and my mouth is relatively fine (no sores). Although I doubt I could eat solid food; I am not needing to use any of the pain meds yet.

Saliva seem to come and go; not much mucous yet. I really hope the saliva doesn't get worse and dry up; as-is is pretty decent.

I stopped going out to public places because I don't want to catch anything.

Interestingly I was invited to a dinner party last night. They knew I couldn't eat, but figured I might like the company --- I declined Guess now I can't complain to anyone anymore about having "cabin fever".

I am feeling more tired, but not sleeping any more than I normally would, just dragging around the house, pestering the cat, watching TV and reading.

I am still holding all the extra weight I put on and I have never been this heavy in my whole life!

DonB,

Sounds like things are going pretty good for you. So glad to hear and hope it will continue. Only one week to go.. Wow I am sure you can hardly wait.!!

If you are having any problems with dry mounth try the Oral Balance from Biotene. It really helps.

Take care.. Diane

Don,

It sounds like you're doing really well. Are you still able to swallow? And are you stretching your jaw? I've found that the skin around my mouth is super tight, making jaw stretches difficult, but I'm doing my best to stay mobile.

Keep up the good work

- Margaret

Don

It sounds like you have listened and really worked hard at following everyones advice and tis paying off. I did the same thing with staying home so not to pick up anything, very smart idea. Hope you continue to amaze your doctors with your progress. Hang in there, the last week and 2 weeks after tx stops can be rough. Keep up the good work.

Don,

There seems to be a small lucky few that do as well as you are doing so count your blessings and lets hope you continue to do well.

David,
The end is just barely in site, but by what I hear I could take nose-dive before then, so lets just keep hoping for the best.

I just hope the big C isn't having as easy of a go with this -- that really bothers me.

Don,

You can only do what you can do, ya know? And you are giving those cancers cells a good run for their lives and their money (or is it your money?). After that, there really isn't much more to do!

The waiting to know the results is hard, especially when you're right in the middle of it. I won't get scanned again until October, until then I'm going to trust that my docs got it right and got it all and that I'm gonna live another 30 years or so.

Margaret,
I am still able to swallow pretty well. I drink a lot of water, a little Plum juice, dark warm cocoa, and (bad tasting) coffee.

For my ENT, I am supposed to eat a little jello, pudding or noddles two or three time a day, but I have become a bit of a slackard due to the awful after-taste of everything.

My RO and MO seem to think drinking, as well as I do, and all the time, like I do, should be enough.

Also apparently this new program isn't focusing on the throat anymore but, the program will change again mid-week and move to the "boost phase" (not sure what that entails).

There is a bit of stiffness in my jaws and neck, but nothing significant and I have no problem opening my mouth (wide) or rotating my neck.

It is still a bit touchy back where they took out the tonsils and hurts when I yawn.

My neck dissection was just on one side and "selective". They just took out two lymph nodes and surrounding tissue. There were two ENT surgeons who agreed there was no reason to go beyond that, base on their visual and the PET.

The concern I have is that I still have seven more zaps, and what might those seven more do?

I really hope I don't have to deal with a lot of dry mouth (so far not so bad). My RO just grins and tells me they know how to shoot straight and there is plenty they aren't hitting -- I hope so!

So when is the the big "B" day? I am alway up for a big slice of cyber cake.

Don -

You are doing well! Wowza!! I'm not swallowing anywhere near as much as you are. Between the terrible taste in my mouth, the burning on my tongue and my throat, its just really unpleasant.

My birthday is next month, the 20th, and I'll be more than happy to share some cake with you

Don-

I kept waiting for the ball to drop on my treatments and for things to get worse...I guess they did for about two weeks but it was nothing like it could have been - I hope that is the case with you. You sound like you are doing great! Just keep hanging in there and you will be done before you know it and eating out all the time! I still get these blister like ulcer things in my throat when I eat something that is too dry (my latest are breadsticks from Olive Garden in marinara, they're soooo good but they make my throat hurt for a few minutes, but I'm too stubborn to not eat them!).

Keep it up...the end is in sight!!!!!! Keep us posted on how you do this week...

Hmmm bread sticks. I forget what they taste like as I do most of my favorite foods. Someday I will eat and it will taste normalt beyond the 1st bite. And another day close to that one I hope to make saliva again and get some dentures and go and enjoy. You are doing great so whatever you are doing, keep doing.

Jim,

You're optimism is so wonderful. One of these days, I'd like to shake your hand. And make you a wonderful smoothie!

You're the best, my man. The absolute best.

Dip the breadsticks in the olive oil!

Our bodies are undergoing a lot of change, both taking in radiation and healing -- Things we observe in the short term may not stick around for the long term -- Excess mucous and drooling are good examples of this.

Just reading about Olive Garden, bread-sticks and marinara is making my mouth water (along wit some birthday cake)

Seems better for dry mouth than Biotene spray

I can't wait to get thru tx and get back a few taste buds.

Pete, I did start doing something I haven't done over the year since tongue and left neck dissection. Now it's getting to where when I cough, it's productive. I hate to say this, but it sure feels good to spit again and get it out. LOL Sorry , but I know no other way to say it. Think I'm going to Margarets and have a smoothie. LOL

I was dismissed from speech therapy today - she said she was sick of my slacker attitude and never wanted to see me again! HA. No, she really just said I'm doing well and she had told me everything she knew to tell me to do and it was now up to me to actually do it and that I'm doing really well! I just have to check in with her once in a while to say hi!

Don-

Breadsticks will give you something to shoot for when you are done with your treatment! I won't talk about what foods I'm eating on here anymore for fear of retaliation!!! I will say that I have not had any birthday cake yet, and I'm afraid too because I tried some during radiation and that's when I realized my sweet taste buds were fried (it tasted like crisco). So even though they have mostly come back now, I'm still afraid of the cake - because I LOVE cake!

Jim-

Did Margaret make you that smoothie yet?

Stephanie!

That is excellent news! You're my new hero.

I'm planning a rendez-vous with Jim somewhere in upstate NY - just me, him and my blender

Stephanie,
Actually a menu list of what tasted good early after the ending Radiation Road would be nice to have.
I really want to get back right away to real food like you have.

Just six more to go.

My laryngitis is subsiding and I felt really good today -- sever cabin fever.

It was overcast so I went out and worked in the yard a bit (still wore my cowboy hat and kept my collar up). Then noticed how bad my car was looking so I washed it.

I think I am actually starting to feel more energetic -- for sure my tongue is better -- may be I have adapted to getting zap or something.

Probably not. It will probably hit me like a flying cinder block in a day or two!

Don:

There are all kinds of food ideas under eating, speech, swallowing and feeding alternatives. Lots of recipies too.

Christine
Thanks for pointing out that sub-topic. It has some nice recipes that I printed out (yummy meatloaf).

But, starting out I am still not sure which foods might at first taste decent.

I saw one of my RO's today and she said I could start getting my taste back about a week after RT is over because my saliva flow is good and the only RT I have left is only on the right side of my face and neck.

Don,

I think you just have to play around with it. BTW, I tried sipping some of the Carnation VHC today - totally disgusting. Of course, my tongue was blasted with rads and still covered in mucositis. Start with mild foods, like pureed soups, yogurts and mashed potatoes and go from there. And I've been told that things can change day to day, so something that works today may not work tomorrow, and vice versa. Its truly a moving target.

- Margaret

Hey Don-

Remember: what worked for me may not work for you - I only lost my sweet taste (except when I had thrush, then everything tasted off). At first I did a LOT of chicken noodle soup (it was the easiest and tasted the best), chicken flavored ramen, yogurt smoothies (they're in the yogurt section, taste like yogurt but liquid so they are easier to get down), carnation instant breakfast, ummm...a lot of fish (catfish and cod mostly). If I went out to eat I ate pasta with alfredo sauce and shrimp was easy to eat. Baked potatoes with lots of sour cream and cheese (this is probably better when the mucositis gets better because the potato tends to coat your tongue and stick places). Guacamole / Avocado. Ice cream. Watered down juices (I started with peach and eventually worked up to apple - but it's more acidic and will burn at first). I raided the baby food section and ate a lot of baby food oatmeal with mashed up banana in it, the pureed bananas, and a few others (just experiment). I can now eat regular oatmeal and I get the kind with peaches in it. I've heard scrambled eggs are good, but I'm not a big egg eater (they kinda make me gag) but I managed to eat some with lots of cheese, they were alright. Pudding was okay as well but it's kind of bland if you can't taste sugar, but it's calories. Start with those ideas and when you get brave start eating anything and everything. Wash everything down with lots of liquids. Also, my speech therapist told me after I finished treatment that basically I needed to suck up the pain (not really in those words) and start eating (the mucositis is temporary but I needed to keep swallowing to help myself out in the long run). So even if nothing tastes good you need to keep eating...one day you'll be eating something and realize it tastes good, slowly but surely! So if something doesn't taste good today, shelve it and try again in a few days or a week or a month - it takes time for things to get better so don't give up on things forever! (I had cake today...tasted alright, definitely not like crisco anymore, but it was a cream cheese frosting so that may have helped! YUM!)

Margaret-

Boost and ensure and the 2cal all tasted horrible to me - still do, but I can drink the Carnation Instant Breakfasts without any trouble. Don't know if you might want to try those? You can add ice cream and blend them or add peanut butter to the chocolate ones and blend that, or add protein powder for some added protein. Just an idea.

Margaret,

I will add those to my new "food list".

Last night I dreamed I was flying back from New Zealand and they served Big Macs on the flight. They were delicious! Before when I have dreamed of eating food it didn't have any taste, but last night those Macs were fabulous

I guess I took a fork in radiation road that will bypass that rough finish.

I had my weekly today with one of my RO's and she said I am one of the very few that gets through this without any bad side effects. She had a big grin!

She said the program changes tomorrow for the final five (boost) sessions and they are unlikely to effect me at all.

They finished my oral cavity a week ago and my oropharynx today, but she said there would still be some radiation hitting the right side of those areas although now they will just be boosting selectively to the right side lymph nodes.

So she thinks, at this point, it is doubtful I will get any of those mouth sores but that it is still possible on that right side.

I asked her if not having a hard go it might mean the cancer didn't either
She laughed and said everything was fine.
Hope so!

She said not to try swallowing solid food for of a couple weeks.

My saliva is good.
All I need now are taste bud

Don-

I really hope your RO is right and you make it through without any trouble! How awesome!!!!!! I can't believe they told you not to swallow solid foods for a few weeks, but awesome, keep swallowing the liquids then. My RO was all about me swallowing as much as I could, whenever I could, and whatever I could. I heard a story the other day about a guy who had no tongue and my RO was still adamant about him swallowing - how does that work! But my RO was OCD about two things - keeping on the weight and swallowing, you can pretty much ask anyone in the hospital about him and they will tell you that. He has a reputation.

I haven't had any food dreams but dang it I have been craving Whataburger and Dr. Pepper since my surgery!!!! Don't think the Dr. Pepper will be too good for my teeth now, but as soon as it doesn't burn my tongue anymore I'm going to have to get one (it's one of the few things that still bothers my tongue)!

Wow Stephanie,
This is a great list and some of this I still have around the house, but had stopped eating when it got to tasting bad.

I am going to start experimenting tomorrow since that will be my first "boost" session day and they won't intentionally be zapping any taste-buds.

I never had the mucositis, or, I guess, never had it to any significant extent.

I notice on you blog you also had TomoTherapy. How is your saliva?
Everyone is different, depending on the target I guess, but my medical team is really convinced that for H&N Tomo has some avantages and helps in keeping good saliva.
Mine is good so I certainly can't complain

I did have Tomo, 32 zaps on it and then I did one last treatment on the Novalis machine which was only targeted at my tongue. My saliva is not quite like it was, it's a little slimy from time to time (mostly just at night and it depends on what side I sleep on, weird I know but if I sleep on the side the flap is on my mouth gets a little dryer and slimier) but I still have plenty. I remember it being really messed up after my surgery (I had to use a suction machine, mostly because I wasn't really allowed to swallow until my tongue healed more) but it fixed itself and then the radiation made it a little off. It's getting better though, I think I still just get mucus in it from time to time and that's what makes it slimy. I noticed that milk makes it a little thicker, so I avoid dairy later in the day and apple juice makes it slimier as well (but it always had). So, no complaints here, for what I've been through, I'm quite happy and I can tell it's still getting better.

Another thing to add to your list that I ate a TON of - canned peaches! They are really easy to eat! Happy experimenting!

Today I came home and hung up my Mask -- It was my last zap
Radiation Road is behind me.

I did have a slight set back late last week and over Labor Day week-end. I developed bad Nausea, Vomiting and Diarrhea. This led to some dehydration, so Tuesday after weigh-in, I spent most the day on an IV

They prescribed generic Zofran for the nausea and I was shocked that it cost $250 for a little 50ml bottle of the stuff (Liquid Gold)! My prescription was for six bottles. Fortunately my insurance covered it.

No luck on eating. The taste-buds are fried
But I am nausea free and back to drinking juice (dark Grape & Blackberry) and water.

My voice is back, no mouth sores, very little mucous and the neck is starting to peel, but in one piece.

They said I really did extremely well and sent me home mask in hand with a "Congratulations Certificate" signed by all my RT team

So it is goodbye to the "Currently in Treatment" forum and hello to the "After Treatment Issues" -- Slowing Moving on

Yeah Don!!!!!


Congrats on finishing your treatments! You have about 2 more weeks to get thru before you start feeling a little better. It will take time to heal so try your best to keep the fluids and calories up, it will make a huge difference. Sorry to hear about yuor setback. Alot of us, myself included had some problems with the last few treatments.

Hang in there very soon you will feel more human

WOOHOO!!! Welcome to the world of finishing treatment! I hope your tastebuds return fast! And zofran was definitely my friend at the beginning of my treatments when I had issues with nausea. Congrats on making it through! Next comes your "all-clear" PET scan!

Congratulations, Don!! What're you going to do with your mask?

I too, am sorry to hear about your troubles over Labor Day. That must have been discouraging but it sounds like your team fixed you up pretty well.

Hang in there, my friend, and don't be surprised if over the next couple of weeks you slide backwards a bit. I'm rooting for you

Don,

I know that feeling and it's quite a relief but watch out for the little bit of depression that can creep in a few days out as you may miss, believe it or not, your daily routine. This also comes at a time when most of us suffered the most in the 2 to 3 weeks post Tx, but the end of that tunnel is very near and when you walk out, it just keeps getting better and more normal.

Congrats Don...walking out after that last treatment is a really good feeling. Brace for the worst for a couple of weeks but have a little hope that it won't be too awful...we only went uphill from the last treatment. Bill didn't experience worsening, in fact each day post treatment saw improvement in all areas and he was eating totally by mouth the second week after.

Hope you have a good recovery, Deb