Wow, it feels great to be on this site...no more treatment!!! Its been 3 days and i cant say i really feel to good. Ok i have heard that this time is no fun, but a few questions here...why does my throat hurt worse now than during treatment? I can barely swallow or even talk? My skin is doing alot better, finally starting to heal, everyday, i gain a lil more energy, the tube is doing great, the thick spit is so damn annoying i cant stand it!!! Thats it...2 complaints ( the spit, the sore throat ) HELP SOMEONE... let me know how to fix these problems!!! And to top it all off, i have sinus infection too!!! But damn, it sure feels good not to go to treatment, haha. Im hanging in there, but really need some help on these issue's. Thanks.

Linda, since I am a caregiver to a pretty sick guy, I can only congratulate you on a "job well done" so far. I think your 2 problems will probably get better-at least the sore throat should diminish - the thick spit may be something you will have to deal with for awhile. I'm sure you will get some good suggestions on dealing with both those issues. The main thing is that you have dealt with all of this so well-remember that in the days ahead-Good for You! Amy

Linda, it is definitely normal that you feel your throat getting more painful than during treatment because the side effects are accumulative. You will expect the pain to stay with you for quite a while and it is difficult to predict how long it will last because everyone heals differently. For me I had to take pain killers regularly every day for about 2 months after treatment. As for the burnt skin, yes, most people share similar experience that this is the first area that gets healed. I spat a lot too after treatment and conumed a large quantity of Kleenex. Yes very annoying but the amount will decrease gradually. I didn't do anything to stop it because I knew it was a natural outcome after treatment. Just accept it as a price you pay in exchange of your health. When there is no more mucus, the mouth dryness soon appears. You have recovered very well already since you are gaining some energy so soon. Be patient!

Karen

Linda,
As I have written you before: the first few weeks following the end of radiation are the hardest of all. My docs at MDACC prescribed me the Duragesic pain patches for the sore throat and I wore the things 24/7 for a few months. I could not swallow anything but a little water and got my nutrition solely from the tube feedings for quite a while.
Has anyone at MDACC spoken to you about the Yankauer suction machine? It is like the little thing that your dentist uses to suck up liquids in your mouth. They prescribed one for me and I kept it by the easy chair during the day and bedside at night during the period when I had so much mucous. I found it much easier to use and less irritating to my mouth and face than constantly spitting into tissues. I would recommend that you speak to the speech pathologist or one of your docs about getting one. Insurance paid for mine.

Take care and keep us posted about how you are doing. One can get very depressed during this time and there is an agency in Houston that provides free counselling sessions with psychologists who are trained in cancer counselling.

Danny G.

Hi Linda,
My husbands radiation stopped August 11th and although the thick mucus has subsided it is still there it takes time the drs says he wakes up everymorning with a swollen face from the radiation that is still there and I believe some of the swelling is from the mouth and tongue ulcers also. Like Karen we go through tons of kleenex, paper towels and napkins plus cases of bottled water its important to keep drinking so the epoglotis doesn't get stiff. Did you get the amifostine shots? Luckily my husband didn't have to many side effects. He did miss about 4 of them because his blood pressure was so low and he did get pneumonia. Also for the burnt skin They gave my husband Aguafhor to keep the skin soft it really helped, actually I used it around my eyes, what the hec it might help those crows feet.
Take Care

Linda, My worst week was the first week after treatment ended but my rad doc pretty much warned me but it still was bad. I am 5 weeks out so I'm pretty close to you. My throat still hurts but now probably 1 on the 10 scale. That thick stuff left me in week 3 but now I have the dry mouth and am atrtached to water bottles all over my house and cars. Still can't taste anything which irks me the most. I have started to gain weight and I feel less tired every day. I feel 200% better than I did because of all of this but still nowhere near "normal". One thing that has helped me is finding Carnation Instant Breakfast VHC which is identical to Ensure Plus BUT has 560 cals in 8 ozs. If you want more info just ask. Hang in there it will get better.

1 Week out of treatment, and thanks to all that responded to my questions! I am here to report that my throat still hurts, the spit is still thick, but i do have more energy than last week! So im seeing improvement there. My skin is healing very good,( a lil itchy when i let it get to dry.) Im still eating by the tube, but damn im wanting some good ol food! I want to hear "crunch" haha, but i know it will all come in time! I dont feel like im depressed at all, im getting impatient with all of this but not depressed. Im still loving the fact i dont have to go to treatment anymore...YIPEEEE ! Thanks again for all of ya'lls help, and i will let you know of any changes that go on here, hahaha wow i lead a really interesting life here dont i ? Im just waiting for changes...haha i so deserve the changes, so i guess thats good, huh?

Linda,

I'm about 10 days behind you. My last xrt is tomorrow. So I follow your posts closely, as I said in the other forum you have been both an inspiration and source of knowledge for me. You are doing geat with your recovery, keep on keeping on.

Thanks

Well im officially two weeks out of Radiation and i went to the doctor today, and she told me i "looked" great! What does that mean? Ok, i do feel alot better, i have energy and my skin, well put it this way, all the evidence of Rad. is almost gone! And i really am starting to feel great, 85% back to normal, But the big question is, why am i so scared to eat or drink, is this tube my crutch now? I cant figure out if im scared of the food tasting bad like it did, or that im scared of the whole idea of just eating, like its going to hurt my throat? I think i have a mental block here, and hell i cant believe its over food...im the one that cant wait to crunch and the one that is sooooooo jealous of seeing people eat!!! I REALLY WANT TO EAT!!! But im really scared to...i did a brave thing and did my first taste test yesterday on the way home, i stopped and got a "orange slush" from Sonic, ( let me say, i hate orange slushes ) but i didnt want to try something i liked just in case it tasted bad or i couldnt taste at all! Well i am glad to report...it tasted ok, YES I COULD TASTE THE FLAVOR i really and truely could!!! Then i went as far as tasting my daughters "raspberry tea" ( which that is something i would have drank before all of this ) and guess what? IT WAS BITTER AND I HATED IT!!! So, does this mean, everything i use to like i wont now? And everything i didnt like, i will now? THIS IS WHY IM SCARED TO DEATH TO EAT!!! I have been dreaming of Outback Steak House and Olive Garden and Mexican Food ( TexMex ) I dont want to ruin those dreams, haha, i swear sometimes i can taste them, if i think hard enough about them! The Cheeseburger story the other day, ummm... i think it was DavidCPA, i laughed until i cried, that was the most funniest thing i have heard, we put so much value on food, dont we? I found myself telling my husband the story and got tickled again, and he just looked at me like i had to much radiation or something, he didnt find it funny at all, but then i realized why would he, he eats, nothing has changed his taste, people that do go through this, they have no idea the every day things as common as eating or drinking we all take for granted...Well, not no more, not this woman, im going to thank god every night for the ability to eat and drink when i can! Haha, people told me, when i found out i had cancer, that it would change my life forever...it does do that, and it does change it for the best, it makes you stop and smell the roses!!! Well, until next week, my goal this coming week is to "EAT" and "DRINK" so i will let ya'll know how it all went, I CAN DO THIS!!!

Linda,

Good to hear from you. I've been wondering where you've been and how you are doing? I'm one week behind you. Today I'm officially out of XRT 1 week. I've managed to keep sipping water and to eat some mother's oats. How is your throat pain? Are you still on pain Meds? Do you have thick mucous/phlegm? Great job so far and you can do it because you are strong.

Linda, I hinted stongly to my wife that I wanted to try a cheesburger and then a slice of pizza. I assume that's because in the last 3 months I have watched 1,000,000 burger and pizza commercials!! She came through with the cheeseburger and I sat hoping the next day for my pizza. It didn't come & I didn't say anything because she has done soooo much. Two nights ago one of her employees, Pokey (a story for another Post) showed up at my front door with a slice of pizza from Pappa Johns. When I did eat pizza, my favorite was Pizza Hut's Meatlovers Pan but beggers can't be choosers. I also let it slide that Pokey was on the clock and I wonder where the other pieces of the pizza were since mine wasn't that hot!! To weak to go there. I could taste the sausage, the pepperoni and the red sauce but the melted gooey cheese was disapointing. I also felt really bloated after eating but al least I finally got my pizza. I'll talk to Pokey when I feel stronger.

Linda,
Good to hear you're doing well. I've pretty much healed burn wise on the face and neck, the inside of the mouth is still pretty raw, but I'm almost off of the sustained release morphine completely, and stepping down on almost all of the breakthrough pain meds.

No taste yet, but I'm hoping for a return soon. I have a fair bit of TMJ-style pain on the opposite side, almost like a pinched nerve sort of pain on occasion. I am undergoing some massage therapy for that next week, hopefully we'll see some improvement there
Take care
Wayne

Tim, it was great to hear from you, and you sound like your doing good! I really hate to answer some of your questions because im going to guess im a rare case(compared to the others i have talked to)I never did take any pain meds while doing radiation or after treatment either. Now im not saying that 1 week after treatment my throat didnt hurt, cause it did, and i had the patch and the codine(breakthrough) ready the whole time during and after but, it just didnt seem that bad enough to take it, let me explain, i had my tonsils taken out before my rad.that is where they found the source is my right one, now that hurt like "hell" i stayed on the pain meds. all the first week, i didnt even wake up unless it was to take more pain medicine ( i have given birth to children and trust me, that didnt even compare, haha. So i cant help you on that question, but the mucous/phlegm OMG that is one of my biggest pain in the butt there is, i hate that alot. I will say it is getting a little better with week 2, but then again, i got thrush back in my mouth so that blew that right out of the water. I have been told that it will last for about 3-4 weeks, i cant wait until that goes away though. I will have to say, im proud of you for still drinking and eating, that is something i cant get myself to do yet...as im sure you have read my post! But i am going to try really hard this next week, and i will report next Tuesday anyother changes going on. Keep in touch and let me know your progress as well. Great talking to you!

David, I have to say, i was reading all the post late one night and i came across yours, and i laughed and laughed,(you made my day) that was the funniest thing i have heard...you describe what everyone is thinking i promise you! Its funny how we take eating(tasteing) for granted. It made me feel like a "fat kid" in a candy store!!! You hit it right on the button. It still makes me laugh to think about that cheeseburger i could almost taste it with you describing it, haha, and im soooo glad you got your pizza too! Keep it coming...i love to hear how the food taste to you (cause that is exactly how it is for all of us too) good luck on your next craving!!! Hahaha

Hey Wayne, Im sorry to hear about the pain on the opposite side, what did they say that was from? And you said "no taste yet", does that mean you have tried to eat? Wow, im so impressed with everyone that can do that, i have some kind of mental block on eating!!! How long have have you been completed with Radiation? How many treatments did you have? Where was you SCC ? Did you have treatment in Canada? Keep in touch and let me know, if you dont mind me being sooo nosey!!! Hope the therapy works!

Linda,
It's been 3 weeks for me since the last of 30 treatments. I started trying to eat solids within a few days. I never did go to a tube, so I've been drinking all along. My cancer was in my left jaw. I had 17 hours of surgery in June where they removed about 40% of my jaw and rebuilt it with fibula from my leg and a free flap graft from my arm.

I did have all of my treatment at the Tom Baker Cancer Center in Calgary, ALberta. It is a fantastic facility, one of the best in the country. A lot of the surgical procedures they used on me were developed by Doctors at the Tom Baker, and I had a couple of them on my team, so I couldn't have gotten better treatment anywhere.

Interestingly, a man I met during treatment is the CEO of a large U.S. company, and could have been treated anywhere he wanted. He chose the Baker center, which says a lot for it.

David, Funny what you say about all the food ads on tv. I never realized it until my husbnad pointed it out. He swore 2/3 of all tv ads were for food. He too went for the cheeseburger when he could first eat. Of course, he would also torture himself by watching the Food Network. I finally forbade him to watch it. It just made him so much worse. Sometimes, he would have me get a carry-out of his favorite food and watch me eat it. I thought it was a little weird when he would sniff my food, but if it made him happy...
He finished treatment 7-13 and we have our 3rd checkup today. Always nerve-wracking, but he looks and feels so much better. He eats almost anything he wants now, but I try to keep it healthy. He is back to work and a normal full schedule. I even have him doing his share of the household chores. So, taste and energy and hair and everything else is right around the corner. Don't get too frustrated everyone! Every day you discover a new food that tastes normal, it is like getting a present.

Thanks for the encouragement

Wayne, Sounds tough to me! Wow, and you are doing this good, im so proud of you, i didnt even start to go through what you did, it amazes me all the different places this cancer hits, its really scarey if you think to much about it! I was a minor case and thank my lucky stars everyday. When i found out, i had read alot on where to get treatment and i did read on Canada. I had heard it was a great place "Tom Baker Cancer Center" but as you know im here in Houston, Texas so M.D. Anderson is in my backyard! Which is a great place too. We are lucky to be able to have a place that knows so much about Cancer. I dont know how you ever went without a tube, and you just kept eating and drinking, im impressed!!!

Today is 3 weeks out of treatment!!! Yipee There has been a few changes, but not much. I do feel better, have more energy. The sore throat, the redness of the skin all gone! Ok i know i have been putting this off, cause i dont want to sound like a total failure, NO I HAVENT EATEN!!! But i will say, i have tried some foods but not many, i have been fighting the good ol' "thrush", which is almost gone AGAIN...(man how many times do i have to look forward to that returning?) So my little goal of eating got pushed back but im here to say, im going to really and truely try this coming week! Oh i have a question for you "been there, done that" people...will my hair in the back of my scalp grow back, if it wasnt directly hit with the radiation? My doc says it will, but what i read on here, some say it wont??? Well thats about all i have to report this week, i really hope everyone is doing great or better, so i will get back to ya'll in another week and let you know if i ever got up enough courage to EAT!!!

Linda,
My Drs said the hair on the back of my head will come back. He did say it may not be the same as it was, probably finer/thinner. My wife says I have some hair back there no, but it is baby fine type hair.

I'm not quite 2 weeks out; I've been eating by mouth a little more and more each day. I started with oats and soup. Yesterday I had some egg noodles with cheese sauce. I still have pain/discomfort in my throat; I pray that goes away soon. I haven't gained any weight back, but I'm drinking the Carnation VHC shakes too. I hope that helps gain weight. I lost 14 lbs since I started and want to gain most of that back.

I think the Drs here in TX will release me next week to travel back to my home in GA. I have my PEG tube scheduled to come out next Wed. What do you think? I'm a little nervous about getting it out even though I don't use it much any more. I still don't have any taste, do you have any taste?

LInda and Tim, My wife says the hair on the back of my neck has started to come back but I can't feel anything. I don't care because I can't see back there anyway & I used to try to shave the back of my neck in between haircuts and I always worried I would cut myself and bleed all over my shirt without realizing it.

Hi Linda,
My husband finished treatment at the end of May, it took maybe 2 months for the hair at the back of his head to grow back, it is finer, very soft!!
Getting the taste back is very slow going, it has been almost 5 months for him, and he just gets hints of taste. He eats everything just for the calories, really has no appetite. He started eating "solid" foods about 3 weeks after radiation.
Congratulation on finishing treatment!!

I thought I would share something that helped me with the thick spit. The doctor prescribed lidocaine and I added that to a solution of baking soda, salt, and water. I can't remember the measurements now but it helped to keep my mouth clean and helped with pain (for a few minutes) and to heal those sores. I always carried my mason jar of that around. It was my best friend along with the h2o.

Oh thank goodness, i will get my hair back ( thinner but back ) i really hate to sound so excited about that, but being a woman, its just a little harder to deal with...YIPEE!!! And Tim you are doing sooooo great, stop pushing yourself, i think you are more advanced than you think, im proud of you, and i know you want to get home a.s.a.p. but i will have to say, Texas will miss you and your family! As far as my taste, im to scared to see if i have it back, when i try to eat, the texture or something just doesnt feel right? Or as i have been saying...its all mental, i dont know? And i have this damn thrush too, so that is not helping me at all. But this week, im going to try to eat, and will let you know if i have taste or not. I know my nose works just fine, haha! I use my tube always, so i would panick to have to get it out right now soon, they told me, 5 weeks and they would take it out. I lost 29lbs though, so they want me to eat and push through the tube. Thanks for the congrats too, Cindy, boy am i glad that is over with!!! And Mary, thanks for the "thick spit" advise!!! That can be a BIG pain in the butt, over coming that part!!! Tim, keep going strong and you will be home before you know it, your doing fantastic!!!

I have seen references several times to choosing between the tube and eating normally. My hubby had a PEG tube but could eat orally while it was still in. That helped to bridge him from eating no solids to eating regularly. At first, there was no way he could bring in enough calories with an oral diet. He would eat some oatmeal or soup and supplement his calories with the PEG tube. That way he could keep trying new foods but not worry if he couldn't finish them or they hurt his mouth. I would just throw it out and try something else.

anemone70/

How long did your husband have his tube for?

Linda,

I think you are doing great too. Thanks for all you kind words of encouragement. Tomorrow will be day 14 post treatment. The biggest thing I'm dealing with now/today is fear/depression for the future. I have a wife and 6 yr old son and my dx has really thrown me for a mental loop. I lay a wake at night worried about thier/our future.

Cindywi, your husband's treatment parallels mine, almost down to the day. Like him, I eat only for calories as my taste is still extemely distorted/disminished.

The hair on the back of my head grew back after about 3 months. It is somewhat thinner and finer and slower growing than before, but it fills in just fine.

linda, I understand the food phobia-mine went on for nearly 4 months while I lived on Ensure and Naturade weight gain and Prosure, probably less than 2000 total calories every day. Weight loss is 30 lbs (without a PEG). I'm now back to eating and off the Ensure (for the most part), but I haven't put on any weight yet. My energy level has improved significantly, though, with food.

RileyMc, I am on Carnation VHC (560 cals) to gain weight, which I am doing nicely but I am still a weak puppy. I am active all am but lie in the bed and watch tv the rest of the day. I can eat anything I want (without great taste)but I still choose the liquids for weight gain and convenience. Are you saying that your energy improved soley because you went to solid foods?

David, my energy level improved SUBSTANTIALLY after I began eating regular food (mostly chicken,beef & pork no bread, potatoes, rice or other starchy stuff.) Now, it could have been a direct result of the food intake, or it could be that I was far enough out from treatment that my body was recovering anyway.

I also began to respond to treatment for post tx depression, so that could have been a factor also. In any event, things are much more 'normal' after I returned to eating and quit depending on the liquids.

RileyMc

What are you doing for depression?

Tim, Unless your peg is driving you nuts, why don't you consider keeping it until you are within 5 lbs or so of you weight gain goal? In the event you cought a cold, flu, sore throat or something over the next few weeks, it would be real handy for hydration, medications, etc. Glad to hear you are gonna get to go home.
Linda, you sound like you are doing great![even with the frustrations] One day at a time, Lady. You will get there. Amy

Tim, my primary care doc prescribed Wellbutrin, 150 mg/day first, then up to 300mg. For me, it works, with no side effects. I'll be seeing him tomorrow for followup to find out if there's anything else I should do.

Stoj, my husband had his PEG put in as preparation for surgery on May 15. I remember the dat eclearly because it was 2 days after we got married. They prepped him for partial glossectomy by inserting trach and PEG. Then the surgeon came in, looked at his tonugue and said the cancer had spread too far since the CT scan 2 weeks previously. He would have had to remove the whole tongue and the larynx. So he cancelled the surgery and we switched to rad/chemo. He did not actually start using the PEG until early July. He had it removed 9-1-06. So the short story is 2 1/2 months, used it for 1 month. By the way, they left the trach in for a week until one of the doctors overrode the others and insisted it be removed. Thank goodness! That was the worst part of my caring for him. Every time I had to clean it, I would cry. I couldn't help it.

anemone70,

Thanks for letting me know. I've scheduled my PEG to come out next Wed, before I go back to GA. How is your husband doing today?

Linda,

How are you doing, how goes the eating?

I have a dilemma. I only weighted 155 lbs pre tx and lost 32. I have since gained 13 lbs back in 8 wks all due to 2800 cals daily from carnation VHC which only requires me to drink 5 8oz cans. I can eat anything I want but I choose not to simply because I can't see how I could eat that many cals a day because of the time that would require. I have had 2 blood tests post tx and passed both with flying colors. I am still as weak as a 3 day old kitten and my wife (neither of us with expert knowledge) wants me to abandon the liquids and go to the solids claiming it will bring my strenght back. My CPA brain says stick with what's working but I still wonder if I'm doing the right thing.

David, I would suggest that much of your being tired and weak is due to the IMRT. John had 30 rad txs and they wiped him out by the end. He spent many hours doing nothing but sleeping for the next month. After that, he would work in the morning and rest in the afternoon. You could try a comprimise with the liquids vs. food arguement. Set a base of 2000 cals in liquid nutrition and try to add another 800 with solids. Cheese, cream soups with veggies, pastas with rich sauces, baked potaotes with sour cream and cheese, any meats you can eat will get those calories up. As long as you continue to gain your weight back, experiment. But don't discount what the IMRT did to your system. It sound like you are doing pretty well. Amy

David,

Even though I was putting a fair number of calories into my peg with Boost, I was really still pretty tired 4 weeks post treatment. However, as Amy stated, that also has a lot to do with the radiation and chemo. I started feeling stronger around week 8 when I was eating enough solid food to have my PEG taken out, but I can't isolate it just to eating the solid food.

I think that you should try to eat a combination of the liquids and the solids. The liquids are your comfort food right now, they are what you know works to get the calories you need. However, it is important that mentally you don't start convincing yourself that liquids are the only option, so try and replace one or two of the cans with that amount in solid food.

Sarah

I have said it may times here before and I will say it again, the correlation between calories and nutrition is tenuous at best. While we all know that trying to maintain weight as our eating becomes compromised during treatment and for the short term thereafter is a challenge, and too many people have posted here that they ate whole cheesecakes etc. to pile on the calories

I agree with Brian. I'm still getting almost all my calories through the tube (despite all sorts of efforts to regain my swallowing), but it's important to me that I try to get as much nutrition as possible that way. I am doing a prescription, high protein (but not especailly high calorie) form of liquid nutrition (Jevity 1.5), which I will continue with as long as my insurance will continue paying, but I also supplement that with fruit and vegetable juices, some of which I get from the health food store and some of which are as simple as V-8 (which I have two servings of everyday) and the equivalent of a glass of whole milk everyday for the extra animal fat it contains (which I don't get anywhere else and figure just a little might help my healing--my cholesterol, low to begin with--is ridiclously low since I've been on this forced diet so mI think I'm OK there).

If you want your body to heal faster, I don't think it's the distinction betwen eating solids and eating from the tube that's key, I think it's what you eat.

I will say, though, I have yet to find a way to make meat liquid enough to go through the tube or down my throat easily so I have bewcome a forced vegetarian But if you can swallow at all, I would try to swallow some meat, which contains proteins your body needs to heal itself more quickly.

Nelie

To Sarah, Brian and Nelie,

First, thanks for your posts.

Reading the back of a can of the Carnation VHC, it reads like a supercharged Ensure Plus. 560 cals, 8.45 ozs, 32g fat with 3g saturated, 5ml choles, 290mg sodium, 440mg potassium, 49g carbs with 15g sugar, 23g protein and a whole list of vits and mins mostly 35% to 100% daily values.

I hear what your saying but I'm still a little confused. It seems that by consuming 4 to 5 cans per day I am getting more than enough for my body to heal itself. It takes maybe 10 seconds to drink a can but would take me 30 mins or so to prepare or get and consume solid food. Even though there is no pain in consuming solid food it still is cumbersome and timely.

Being a licensed CPA for the last 34 years has taught me that I usually don't see things the way more normal people do. Maybe I need to be slapped around a bit before I'll see the big picture.

I am living proof that you can eat almost nothing but cans of Ensure for 13 months and stay alive. But I had horrible mucocitis from the radiation in the times before IMRT. I think that some of my slow healing had to do with the fact that, while the cans of Ensure had a balance of nutrition on the label, there are certainly micro nutrients that are not there, and even when it comes to something as simple as protein...which in Ensure comes from soy, not all proteins are created equal and they vary in the amino acids they provide as well. So since I am not a nutritionist, I will not try to go into the minutia of all this. But there is a difference between sustaining life and actually thriving. Since you can actually eat, which many cannot, I would think that you would be enjoying the leap out of cans and back into real food. It can't really be a matter of you are too lazy to do this...

I LOVE eating now. Sure it's limited and I could no more eat a hamburger than shove a Mac truck into my mouth. But of the things that I find that I can eat, I really savor them after going so long with out the enjoyment of their textures, subtle flavor differences, and exploring and finding new stuff that does fit my capabilities. I wouldn't ever want to distil this enjoyment down to the simplest possible thing, even if I could get it out of a single pill each day. Along with beautiful women, great friends, and challenging discourse with people of a different opinion that I can learn from... eating is one of life's great pleasures.

Well said, Brian. From someone who misses it very much!

OK guys, this is what i have tried so far...a pickle, 1-chip with dip, applesauce, peanut butter, cookie, oatmeal, cheerio's, gatorade, 7-up and i think thats about it! For most part, i could taste them all, oh i tried a cheeto and cheezit but couldnt taste them, but it still doesnt feel right? Could it be this trush i have or is this a bad case of mental blockage of EATING? Im going to keep trying until it gets right or whatever...im getting depressed about this eating, why doesnt it work for me? Any suggestions?

Linda, for someone who has attained the age of 46 plus a few months, you sure haven't learned much patience.Does that come from living in Texas?
You say you are getting depressed about this eating- I read that you are getting obsessed! People who are anorexic get mental blocks about eating and you are not that--are you? If your mouth and your brain are telling you it isn't time to push lots of food yet- don't. There are lots of small steps you can take-I guess pickles are 1- record each thing that does taste good to you and keep eating those as you try others. I have lots of friends who gobbled things during pregnancy that they would not touch now. Don't get frustrated, just keep exploring. Amy

Linda, I am envious you are able to even eat a pickle! I still have such a sensitive mouth that anything in vinegar or brine HURTS (and I suspect probably always will since I'm a year and 4 months out of radiation)! I used to be such a lover of things like olives and pickles that when I was seven I asked for a jar of especially good pickles in my letter to Santa!

Eating may never "feel right" like it used to but you are doing way WAY better than some of us here so just keep trying and be grateful for what you can taste and swallow.....

Linda, I'm glad that you are even at the stage of trying different foods. I think as cancer survivors no matter what stage in our treatment we are in or even past treatment like myself there are issues that are goimg to depress us. If you seen me you would never know that I was a cancer survivor. I know that some head and neck survivors have disfiguring surgeries and as many of you sit and fight your way thru depression I just want to say you have my admiration and love. Every morning when I look in the mirror I still duck but for different reasons. Linda I had a peg and was not able to swallow anything for over a yr. and believe it or not there are many days when I find myself saying I wish I still had my peg in. I was never hungry when I had it in. My problem is I need to drink my ensure to compliment what I eat in order to maintain optimum health. Sometimes I,m a bad boy and don't. My biggest problem was my teeth decaying and my fillings coming out while eating. I had a different cancer than most on this site so I don't think you will have the teeth issues I'm experiencing. I think it is so unbelievable that I have a choice today that I can have a Filet Mignon or a Strawberry Ensure, and to prove the point to never take my advice, I can't decide which to one.
Mark

Linda, I'm glad that you are even at the stage of trying different foods. I think as cancer survivors no matter what stage in our treatment we are in or even past treatment like myself there are issues that are goimg to depress us. If you seen me you would never know that I was a cancer survivor. I know that some head and neck survivors have disfiguring surgeries and as many of you sit and fight your way thru depression I just want to say you have my admiration and love. Every morning when I look in the mirror I still duck but for different reasons. Linda I had a peg and was not able to swallow anything for over a yr. and believe it or not there are many days when I find myself saying I wish I still had my peg in. I was never hungry when I had it in. My problem is I need to drink my ensure to compliment what I eat in order to maintain optimum health. Sometimes I,m a bad boy and don't. My biggest problem was my teeth decaying and my fillings coming out while eating. I had a different cancer than most on this site so I don't think you will have the teeth issues I'm experiencing. I think it is so unbelievable that I have a choice today that I can have a Filet Mignon or a Strawberry Ensure, and to prove the point to never take my advice, I can't decide which to one.
Mark

Linda,

Just checking in...everything OK? How goes your recovery? We haven't heard from you recently?

Hey Tim, Everything is going good for me, how about yourself? Its been awhile, lets see, almost 6 weeks out of treatment, WOW!!! Sounds like a long time, but seems like yesterday. I am still fighting that damn "trush" the docs have tried 3 different meds on me, in fact i got my 3rd one today, so keep your fingers crossed. Other than that, i really cant complain to bad, i try different foods and havent found anything im crazy over yet ( of course, it could be the thrush that is keeping me tasting correctly ) Im not sure? I go in on the 7th and 8th for the blood test and CAT Scan, a little nervous about that, but im very curious to see, if they can tell me, im done or what? The scarey thing about all this is, at the very first, they never could find cancer, they had to do surgery first, so what makes them so sure, i still wouldnt have it, by the blood work and CAT ? anyways... I still have my tube, i keep losing weight, so until i can get the eating thing going full blast they want it to stay in. So enough about me, tell me how you are doing? Are you feeling ok? Are you eating? How is the depression? I will look forward to hearing all about your recovery

Linda,

I'm doing OK. My rcovery is slower than I would like. I still have a sore throat/tongue. The ENT has scoped me and said everything looks fine so far. I have radiation burns on the base of my tongue (tumor area). Hopefully that will go away soon. I feel a lot better mentally since our return home to GA. I'm eating at least three meals a day and having a can of boost plus or carnation VHC daily. I'm not losing anymore weight but I'm not gaining any either. The problem is taste, I still can't really taste things yet. I think when that comes back so will the weight I hope.

I hope you get over your thrush soon. I'll think good thoughts and pray for you during your CT/bloodwork.

I'm glad things are going good for you.

Tim

Since i was on reading the response from Tim, which by the way, congrats on being home! Wow, i bet that is a relief in itself. Now for the update...I tried "Olive Garden" today, first with the salad, yuck!!! It was bitter (normally i love their salad) then the Chicken Parmisan, double YUCK, it had a horrible taste! But i am glad to inform you, the Peach Tea was wonderful! I drank 2 glasses. Then that little mint you get at the end of the meal, before they were heaven, now...hmm lets just say they were ok! So next time we are going to try Red Lobster, i will let you know how that tasted! Have a great weekend everybody.

Tim and Linda,
It took me quite a while before things began to taste good again...much longer than six weeks from the end of treatments. The first thing that I really began to enjoy was chocolate milkshakes that I made at home with Homemade Vanilla Bluebell ice cream with chocolate Hershey's syrup. Then I began to be able to taste salty things and lived on matzo ball soup two meals a day for about a year. I kept the feeding tube for 10 months, and constantly supplemented my diet with chocolate Boost, which, by the way, I still buy by the case at Sam's, even though I can eat most anything. For me it makes a perfect snack when I am hungry and it is so much easier to swallow than most other snacks.

Good luck guys...be patient and keep getting better.

Danny G.

I think I have tried all my favorite foods and I can pretty much taste the first couple of chews like it's almost supposed to taste. To my surprise I had a Wendy's single Classic which is real gooey and it was actually pretty tasty through out. The best so far is my wife's veggie premivera with red & green peppers, onions, mushrooms, artichokes and tomatoes served over a bed of rice with optional shrimp. Rice and shrimp are OK but the rest is quite tastey.

I still keep eyeing those Toco Bell commercials even though I hated that stuff before. Oh well.

Linda,
I think you are ordering the wrong foods at Olive Garden. You want food that have lots of sauce (not red) and lots of moisture (not chicken). While I have never eaten at Olive Garden, I imagine they have lots of pasta dishes in cream or olive oil sauces that you could taste. Maybe try an appetizer size portion of a couple of items. You also want to stay away from anything aciditic. 8 months out I had my first lobster and it was delicious, especailly the claws. I never did much like the tail meat. Good luck and keep trying. Don't get discouraged. Go with friends and sample items from their plates.

Take care,
Eileen

Hey everyone, its been a long time since i have been on here, hope everyone is doing good! I have a question, I want to remove my tube ( because i am EATING now and drinking on my own ) my stitch that held it in place broke the other day, and it seems like it is coming out anyways on its own...its getting longer, my question is, how long is this tube? Can i pull it out? Why is it starting to make my stomach sore? Why is my stomach seeping weird stuff from around the tube? I go into the doctors tomarrow, but i would rather pull it, than let someone else do it, haha yep im a baby, it just scares me if someone else even barely touches it!!! So has anyone pulled their own out before? Oh and for another subject, there is a nother question, i have had my CT's and my blood work, i quess to see if they got this or what??? I dont understand what they are suppose to be seeing here, cause when they discovered the cancer it wasnt by the CT's or the Pet's or the bloodwork, it was by surgery cause the other things didnt show anything, so what makes them so sure it would show up now on them? Just a little concerned i quess and confused????

Linda,

Welcome back. Glad to hear you are eating, good for you. Do you have any lingering side effects?

My tube came out really easy, the Dr just snipped the stitch and then pulled it out. There are a couple of different PEG tubes out there, so yours may not come out the same as mine. Maybe you can check with your Dr and pull it out yourself in the Dr's office.

I see your point about your scans...maybe just to confirm you are cancer free

Linda - Please don't pull your peg tube out yourself. It sounds like yours would be safe enough to do so, but peg tubes can be very different. Many have a 'bulb' of saline on the inside to keep them from coming out. These can be jerked out, but it is a messy and painful process. Some tubes just slip right out - requiring nothing more. Some need a stitch or two to close the stomach and start the healing there. Get some counsel on this one - you probably don't need the 'excitement' of doing it wrong!! Be strong. Tom J

Linda
I'm pleased to hear that you're doing well, and the PEG is ready to come out.

As you may remember, I didn't have one at all, so I didn't go through the removal proccess, thank goodness. I'd leave it to the DOctors, though. There are several types, some with bulbs, some with spiral coils, keeping them anchored inside the stomach. You may get an unpleasant and nasty surprise trying to remove it completely.

My sense of taste has come back rather quickly. It's only been 2 months, but it's about 70% of normal now. I've had trouble with post treatment infections (ear, sinus, throat and thrush, twice), so sometimes it feels like one step ahead, and two back, recovery-wise.

I've started to eat a lot more solid food in the last couple of weeks, and actually had english style fish and chips over the weekend...it was fantastic!

I've discovered that some of my favorite foods are just non-starters now; tomato sauces, salsa, citrus fruits...way too harsh for my sensitive taste buds!

The only way you're going to find out for sure is to try different things. I make a point of trying one new thing every single day; I just keep a toothbrush at the ready in case it doesn't work out, so I can brush away the burn.

Who'd have thought we'd feel this much better, so soon????

Take care
Wayne

Hi Everyone;
A couple comments and questions. I had a neck dissection in February and then had reccurence found in July. Just finished Radiation and chemo just about 4 weeks ago. The mucus has improved dramatically over the last week or so and I am tking a little bit by mouth now (combined with a lot of water when I do eat a little). My throat is still very irritated and sore and I have numerous "ulcers" in my mouth. Some go and new ones come. Dr.'s say I'm getting along well though. These ulcers scare me though, especially the one's that are right around the scare tissue from my surgery. Is anyone else experiencing these sores and for how long? It almost sounds like eating actually may hinder healing process. A few of you mention Carnation VHC. What is VHC and where do you get it? I learned the hard way at the worst time in treatment (just as I started getting the sores) that I was allergic to the soy products and they would come back up the minute I put them in the tube. OUCH! So I have been on Carnation Instant Breakfast, but it doesn't have the calories you all are talking about. My Dr. didn't give me the lidocaine but had me mix the water - 1 gallon drinking water and 1 tablespoon each salt and baking soda. When I first tried, it really burnt too bad, but about two weeks out it really started making a difference. As Mary stated it really does help, just stay with it.

Steve,

It's best to start your own Post so that complete attention to your question can be given. Go to the topic you want to Post under and click New Topic at the top of the screen.

As to VHC....Only pharmacy's carry it, like Walgrens or CVS. Call the Pharm Dept and they will get it for you in 1 to 2 days. If you don't have a large pharm like those e me and I'll give you the tele number to find out who in your zip code carries it.

Thank you David. I'll remember that. I did find some info on the carnation from their website, but it wasn't clear if it is soy based or not. If it is I sure want no part of it. Sounds as though you are eating pretty well after just a few months. That's wonderful!!

Rhank you for your help.

Yipee, i got my tube out!!! Thanks for all the concern about me pulling out my own tube. Haha, i didnt do it, ok, i waited until the doctor did it, and guess what, it didnt hurt at all but for all of you that are wanting to get that tube out....DONT PULL IT YOURSELF, thank goodness i didnt do it, cause it had an anchor on the end of it, and it would have ripped my skin! So, let them doctors earn that money and leave it to them. OK, about eating...wow, life is getting better and better everyday! Ummm...."food" finally!!! Damn, i never thought some days, that i would taste again and enjoy eating again, but all of you were right, it does come back, slowly everyday! Spicy i can still live without but i cant wait to eat this good ol' tex-mex food!!! I have gone to my check ups and so far so good. They had some concerns about my lymphnode not completely disappearing yet, so i go in for a ultrasound on the 28th and if they see concern, then i will do a needle bio. so......waiting, waiting, but i will have to say, my rad.doctor is not concerned, so i think of it this way, i can sit here and let it ruin my holidays worrying about it, or i can enjoy them and think about it when i have to. And i see those choices as a no brainer, so everyone enjoy your holiday and your families and enjoy tasting that wonderful food!!!

Oh i did have a question, has anyone gone through physical therapy for their neck? Just wondering...i have a little of skin under my chin, that they say has fluid in it and they are going to show me how to get rid of it? How rude is that...i do not look like a turkey!!! Ok, maybe it wasnt there before, but hell you really gotta look for it, to even see it!!! Has anyone experience this "floppy skin" under the chin???? :rolleyes:

The "turkey chin" seems to be a fairly common side effect.

Hi Linda, Glad your tube came out with no problems or pain. Just letting you know that one of my enlarged lymph nodes never shrank after treatment and that was seven yrs. ago and I have not had any issues. A lot of head and neck cancers can't be picked up by scans, a lot of our cancers are found by blind biopsies. The important part is that yours was found and treated. I had floppy skin under the chin also and it eventually went away. I don't recall how long it took but it did disapear. Enjoy your friends and family over the holidays and happy eating.
Mark D.

Hi Linda,
Yes PT can help with the fluid in the neck. It also helped with saliva production as I was also getting intra/extra oral massage. And the moist heat felt wonderful. Like going to a spa. Insurance should cover it. Get your doc to recoomend a good PT.

Take care,
Eileen

Thanks for all the encouragement! And for all that would like to know, there is a name for what i call "turkey chin" it is called "Lymphedema" and it is a real condition for people that has had radiation or has had the lymph nodes removed. Here is the correct definition of Lymphedema-it is a collection of protein rich lymphatic fluid. It is caused by interruption on normal lymphatic flow often due to surgery,radiation,infection, or trauma. It is the protein in the fluid that makes it difficult to treat. The protein acts as a magnet for more swelling and serves as a food source for infections.* Crazy huh, who would have ever thought it??? Haha, and I was just praying that this turkey neck was not due to old age!!! Yessssssssss, i have a condition, haha. Well,the cure is treatment...but listen to this, it is covered by insurance and its like getting a massage, wow how great is that? I went for my first appointment and they had to evaluate me then took pictures and measured it, then they started the treatment, Oh i thought i was in heaven, it felt sooooo good, haha, this is a good part of all the "hell" we have to go through with this cancer! I was told to find the positive side of this cancer and i think i just have! Mark, thanks so much for letting me know about your lymph node, that really helped take the edge off of this waiting game! Thats what my radiation doc had told me too, but i just needed to hear it from someone that has been through this. You know how some docs seem to sugar coat stuff! Eileen, it is going to be like going to a spa, i agree! Can't wait till my next appointment haha. Everyone have a great day

Hey everyone its been a long time...been busy with the Christmas thing, shopping for 4 kids and their spouses are enough to wear someone out!!! Good news here, the turkey neck ordeal is going away Yipee!!! Got a few more treatments and thats it, damn, im going to miss my daily massage though, thats for sure! Well, i hope everyone is doing great and having fun, until we meet again....

Linda, tell your Docs that your neck and back are begun feeling the aftereffects of radiation and you simply MUST have a script for at least 6 months of professional massage to get through this. Amy

Linda,

Anything the rest of us could do on our own to help our Turkey Chins? What exactly did they do to you?

David, she just massages the start out point (which is where they removed my lymph node and kind of pushes softly against my skin and moves it to the opposite side) Its so hard for me to explain, but she said it is right under my skin, not in the muscle so it is done with a soft touch. She also has me doing facial expressions and laying down(on my back) and turning my head to the left and then to the right to help stretch my neck. David, im sorry i dont explain things to well, but do you have insurance? Cause if you do, it is covered, this is a "true condition" people get from radiation or removal of the lymph nodes. So far it really has helped(it also feels great, haha) believe it or not, i was sore from it for a couple of days, you will be surprised how tight everything gets from the radiation!!! My jaw also had a bump on the side of it and now it is gone, so i know it is working, slowly but surely. If i can fax the papers i got from her, to you, let me know, contact my e-mail address and i would be more than happy to send them to you.

Hey Amy, dont think i havent thought of that myself, haha unfortunely my insurance only covers so much a year of physical therpy! But hey, im enjoying while it last Plus the benefits it offers...(getting rid of the turkey chin)

To Everyone out there...on this forum, I want to share something with ya'll, something we all need to remember, weather we are just getting started with this or we have completed our treatments, this is for everyone that has cancer or has survived cancer. This is our Christmas Card to ourselves...please just go to the website and take a few moments and enjoy!!! THIS IS FOR US...www.TheSurvivorMovie.com

Linda,

I couldn't access www.thesurvivormovie.com and a search didn't come up with anything either?

Linda,

I liked the survivor movie. I'm glad to hear your turkey neck is getting better. If we don't speak before have a very Happy Christmas.

Tim

Linda,

I got to see it. I guess my computer woke up.

Thanks

Linda, Thanks I also watched the movie. I really liked it. Very uplifting! Thanks for sharing it with us.

thanks Linda, Inspirational! Tony

Your posts have all been so helpful and positive. My son just had his last Rad treatment two days ago and it was pretty rough with nausea and soreness in his mouth and throat. He's only been able to take liquids and I don't know from one day to the next what he will be able to tolerate. I went to the health food store and got some Whey protein powder. The food store person said that even the unflavored powder had a vanilla taste which made me wonder about putting it in soup. The sheet we got at the hospital on nutrition said it could be mixed with water/juice/soup, etc but I wonder about that. My son's sense of smell has gotten sharper and he smells everything. He sits cross legged on the bed and leans way over to smell it and sometimes he just sits there with his head hanging over the soup bowl. I gave him some beef broth which he had tolerated yesterday but today, he said it tasted weird and I told him I had not added any protein powder ( I really hadn't - hoping I could get him to take the broth without it first) He said it was just his weird taste buds. Does anyone have a suggestion for the protein powder or a special brand? My son has been in bed since Tuesday and very weak and I worry about trying to get him to eat or drink. I'm thinking now that maybe he should have had one of those PEG tubes. He says his throat hurts but the nausea is not has bad now. I've been pushing him to drink water, grape juice (diluted with water) and he doesn't want anything with milk in it. He gets a little upset with me when I try to push too much. I don't wake him if he's sleeping but if his eyes are open I do try to get him to drink something. I've made copies of several posts on this page so that I can show him your suggestions. Maybe that will relieve some of the "pushyness" coming only from me. I'd appreciate any suggestions re any particular brand of whey protein powder and how it does in soup.

Anne-Marie,

Have you tried Carnation Instant Breakfast VHC. It has 560 nutritional balanced cals and is lactose free. You can drink it room temp if he is sensitive to cold. I still drink it to boost my daily cals.

GNC carries a protein powder called AnyWhey that is flavorless. It can be mixed into soups, but it's best to mix it up with a bit of water first, then mix it into the hot liquid or it will curdle, as will other protein powders. It's best when put into cream type soups, so I don't know if he will tolerate even that. He needs his nutrition, and he may need a PEG tube to get him through this if he loses too much weight.

Remember that it's going to get worse for him before it starts getting better -- Post-rad is kinda like having to let food sit in the microwave oven for a few minutes so it will finish cooking -- It can last weeks.

That said, the more swallowing he can do now, the better off he will likely be in the future.

Same is true for opening his mouth as wide as possible to keep everything in his jaw system flexible (search 'trismus' for more info) -- These first few weeks are apparently the critical stage -- If he can stand it with his mouth sores, brushing his teeth will help with the opening and to keep his teeth clean.

As far as taste goes, in my case I could taste salt early on, but anything sweet had an unpleasant metallic taste to it -- Safeway and WalMart carry house-brand nutritional drinks in three flavors, plus there's ScandiShake that comes in flavors and you mix it with milk.

Pete

Anne Marie, First of all thanks for finding the positive in my post, i dont always feel positive but i try! If he starts loosing to much weight fast ( 5ibs. ) a week, get the tube, plus it helps with getting the nutrition and liquids you need, which makes you heal so much faster. It is not painful at all to get put in nor is it painful to have it taken out. If i had to do this all over again, i would ask for one the first day of Rad. The sleeping is normal, i slept for the first week out, then took 2-3 naps a day for the second week, it kicks your butt worse after the treatment, than during! I also would like something one day and not the next, in fact im still like that and its been almost 3 months out (and i still dont have my taste buds back totally) its just going to take time, you will see the improvement he makes everyday, just be "Mom" that has to be the greatest gift of encouragement there is, to have your mom by your side...good luck and let us know if there is anything we can help you with. Merry Christmas and let your son know we are pulling for him. by the way, what is his name?

I found where the GNC store is at and tomorrow will head over there to look for the Carnation Inst. Breakfast VHC, the ScandiShake and the AnyWHey powder. I'm going to bring my son (Paul) my bathroom scale so i can see how much he's lost since he's seen the doctor. When I try to get him to drink more liquid or soup, he says he has to wait between the waves of nausea and pain to subside inside his mouth. He's not doing any mouth exercises because he says he's waiting for the sores to heal. I think the doctor also talked to him about trismus so I know he's aware of how important it is. I'm going to talk to him again about the PEG tube. Thanks for the really helpful reminders and suggestions. It helps to know from those who've been there, that there are ways to survive all these symptoms and move on to recovery. Just knowing that you all care about my son really helps me to keep going too.

Anne-Marie, It sounds like your son is in the "just hit the bottom" stage of his treatment. Many of us have "been there-done that". AS a caregiver, this may be where you have to put your "Nurse from Hell" hat on and wade in and get reeaalll tough with him, his Docs.etc. You will need to be very vocal about what is happening at home on a daily basis and what issues need to be addressed. His issues with smell, taste, etc. are real ones,. but the biggest issue is getting nutrition in him. Don't give in if you see him going downhill. Keep pushing. Amy

Anne-Marie,

You will not find the Carnation VHC at the GNC store. It' easiest to order it through a pharmacy like Walgreens or CVS. They can get it to you in a day or 2 and cheaper than ordering it online. Make sure you tell them VHC, the one with the 560 cals. There are many Carnation Instant Breakfast products out there.

The first 2 weeks or so AFTER TX is usually the WORSE for everyone. By week 3 he will probably walk out of that dark tunnel he has been in and start to feel like he's alive again but ONLY IF he maintains his fluids and nourishment.

In light of that fact you may want to talk to his docs about the feeding tube they put down his nose into his stomach. It takes a minute or so to "install" and they have to x ray his stomach to make sure it's in place. It's temporary and it doesn't require the surgery that a Peg does. After it's gotten him over the nausea hump and he can start to eat solid foods and his confidence returns, he can, with his doc's permission, pull it out himself.

I also did not have a Peg and I lasted until the end of my first week post Tx but I let them put the Nose tube in because I/they no longer was able to manage the nausea. I had mine in 10 days and I stopped taking all meds, got hydrated, got nourished, got rid of the nausea, got my confidence back and started to eat solid foods again. One day I called my doc and gave him my progress report and ask him if I could pull it out myself and he said "go for it". Took 10 seconds and zero discomfort. The "nose job" showed me the way out of my dark tunnel.

Anne-Marie,

I'm with Amy on the fact that it may be time for the "nurse from hell" to make an appearance. When I got to the point where I said I couldn't eat, and I felt like giving up, my husband would hear none of it. He pushed me to keep my intake up, through mouth sores and hacking and horrific pain, and I'm glad he did, because it kept my weight loss to a fairly controllable level, and I was able to recover with minimal swallowing problems.

Cathy

Your posts have been so helpful! I didn't realize there was a difference between the PEG tube and the nose tube. I didn't get to the GNC store yesterday because of plans changing and caring also for his daughter who is off school for Christmas vacation and going to the drugstore for prescriptions but will get back to Walgreen's and order the Carnation VHC. I've made copies of your recent posts and will bring them to my son later today. It's only been one week post TX and seems like a whole lot longer but my son said he felt like he was getting a little better. I don't have to dilute the gatorade anymore and he did drink a whole can of the 350 cal drink during the night and had some soup. Before I left yesterday, he managed to eat 3/4 of a grilled cheese that I made with lots of butter. He is no where near the 2000 cal per day but doing a little better. Says that he doesn't want to break open his sores and have to throw up blood. It's about 3:45am now and I couldn't sleep and your posts have really encouraged me to keep going and help him keep going, too! Thank you so much for caring.

Anne Marie, how is your son doing? Have you monitored his weight? Any loss? What is he eating a day, and how much liquid is he drinking? Is he sleeping a little less now? This should be his 2nd week out of Rad. right? You should be seeing some changes in him. It will get better and better as time goes on. Keep pushing him, no matter what! Your doing great

I have great news... I went to the doctor yesterday(from 8am-4pm)had a bunch of check-ups including a ultra sound on my neck(when the CT scan came back 2 weeks ago, there was a suspicious lymph node) well they told me no worries, the lymph node just looks like a left over from radiation, and would soon disappear. Wow what a relief, i have been biting my nails on this one for 2 weeks now, just playing that damn waiting game...but they also said they would do another CT scan in 3 months and ultra sound just to make for sure.....it isnt growing or suspicious again!!! So i have decided not to sit here a worry about this crap for the NEW YEAR, im going to live my life as if nothing was wrong and be happy everyday, that i beat this terrible thing............so far!!!

Linda,
I had a scare from a suspicious node once or twice myself. One time they told me that I shouldn't worry, that when I came back to MDACC in three months for another CT scan they would look at it and see if it had changed size. I said "B.S.!" and called my cousin who is a radiologist and owns a couple of imaging clinics. He gave me a PET scan but, fortunately, the docs at MDACC were right...it was nothing to worry about.
Naturally those of us who have gone through this stuff get nervous when anything happens that is weird, especially in the head and neck area. I worried when one of my eyes was tearing and went to an opthamologist, worried once when I got dizzy getting out of bed, and worried when the dentist found a little spot on my tongue. We need to be constantly vigilant but not worry too much.
I am glad that your recovery is going so well Linda.

Take care,
Danny G.

Linda, I am so happy to hear about your great news. Your last post reminded me so much of a commercial that I saw on T.V. about 10 Yrs. ago.

There was this old lady with a deep raspy voice who had Lung cancer, She sounded tough as nails-- bragging about how she raised 10 kids and 25 grandchildren, survived a Heart By-Pass, worked 40 yrs and never missed a day of work etc. etc. and she said "there was no way she was going to let cancer beat her". She sounded so confident then her head lowered for a minute and when she lifted it up their were tears in her eyes as she said " I Hope". Linda hope you have the best New Yr.

I want to wish everyone a very "Happy New Year" and let it be a healthy year for us all! I have made so many friends on here, and i just wanted to thank each one of you, for helping me get through this, honestly i couldnt have done it without all the support on here. This has to be the BEST thing that i experienced while going through this terrible disease, is making all my new friends! Bless each one of you and you will always remain in my prayers. So with this said....."HAPPY NEW YEAR" everyone

I got that dreaded call today, and here i go again the "waiting game"...does this feeling ever GO AWAY????? I have to go back in and do a biopsy on that lymph node they said i didnt have anything to worry about, just last week!!! What the hell, i know this cancer is reaccuring but so soon??? I ask what was going on and they just said, they wanted to double check it, to make sure the "cells" are dead and not active!!! So now i get to wait until the 11th, which is not to terribly long, but trust me, its long enough! So my question is.......has anyone been through this before, or have suggestions??? I swear this "Cancer" is going to make me crazy!!!

Linda
I'm really sorry to hear that you're into the biopsy cycle so quickly. Have you talked to any of the councilling staff at Anderson?

We started seeing them right after I was diagnosed, and have continued to do so even post treatment. I can't tell you how much help it's been. If you haven't, it may be worth a try.

You've heard it before, but I'll say it again; it isn't cancer until the microscopic exam says it is. Until then, don't sweat things too much.
Let us know what you find out, mkay?
Wayne

Linda, My heart goes out to you. You are going to worry until you get the results. Venting here is one way of keeping your sanity.We are with you and worrying too. Well Linda The way my scorecard reads the score I have 15 times that I was convinced my cancer was back compared to 2 or 3 for you. Waiting is so difficult so you make sure you keep us all informed.
Linda also I want to thank you because when I was diagnosed 7 yrs ago the CT scan had 3 or 4 enlarged lymph nodes -- thinking about it now maybe they were not cancer and I have been worrying over nothing as well.
Always,
Mark D.

Just thought I would comment on theme of last 2 posts--- Wayne's post-
"It isn't cancer till the microscopic exam says it is." Then there are folks like me who fear the worst and hope for the best.

"This exam will finally confirm my suspicions"

No matter what type you are we are all cheerleaders of each other. Wayne your inner strength amazes me, and Linda I hope you can be as lucky as me.

Linda,

I am sorry to hear you are once again sitting on the edge.

I went through a scare back in Oct. I am not sure if we ever get over the fear of recurrence. I am thankful to those here that helped me keep my head on Straight. So my thoughts are with you. Try to do one day at a time, nothing has changed until they confirm it.

Yes, this cancer will make you CRAZY every time you go in to be checked! We are always up tight during that time and with fingers crossed. I pray it is nothing.
Take care,
Diane

I'll pray you don't go nuts waiting until the 11th and for negative results. I really want your results to be nothing to worry about as do you.

Hello Everyone, Needless to say, im totally HAPPY!!! I got the biopsy test back and NO CANCER!!! Also just got back from the therasic doctor and all clear there too! Wow, that was a trip.......I cant believe this is what i have to look forward to for the rest of my life, just wondering if or when it will come back. I really have to work on my frame of mind here, or this is going to drive me crazy! Im almost 4 months out of Rad. and im feeling really good, i dont have all my taste back yet, but it is improving everyday. Im being able to eat a little more and more as time goes by. I must say...i dont care for "sweets" that much anymore, but im sure that will change in time too. Well just thought i would let ya'll know about the test and progress, thanks for those who were concerned, I think i need some personal down time from this Cancer stuff and i need to re-group, haha in other words, change the ol' thinking!!!

Way to go, Girl! I'm so pleased for you and your good news. Keeping a positive attitude all the time is tougher than we'd like to believe.

I'm finding that out too; Its my turn to have a suspicious spot in my mouth. I saw the dental oncologist on Tuesday, and see the ENT this coming Tuesday. I'm telling myself its nothing...and praying that I'm accurate. Too many ups and downs....
Have a great weekend!
Wayne

Linda I am Thrilled everything is ok. I was worried about you because I haven't heard freom you. I don't think anyone conquers the fear of recurrance we just learn to cope better over time. You are well within the time frame for driving yourself crazy.I'm still crazy after all these yrs. If I knew cancer was such hard work on me mentally I never would of gotten it. This is tough to get thru so like Joanne says we really have to ENJOY the little moments in life, and I'm getting better at it. One of those special little moments is your back in the pack and you have a clean bill of health,and that puts a smile on my face. Congrats!
Mark D.

Hello Everyone! Wow, its been along time since i posted on here, although i have had a look every now and then, just to keep posted on everyone! I dont see many of the ol' timers posting alot anymore, alot of new comers (which i wish ya'll all the luck in the world) But where did everyone go??? I guess we all need some R&R time, after going through what we have, well, lets see, its been 6 months since my last treatment...wow, and 1 year, since i was diagnosed! Time flys when your having fun hey, im just happy i survived this! Well i would love to hear from ya'll and let me know how your doing.

It's good to hear from you again. I'm glad everything is going well for you. If you get sometime can you update on your side effects from your Tx. I still struggle with the dry mouth and the lack/difference of taste, especially sweet stuff. My energy levels is usually good but I do have some days that just wipe me out. But as you say I'm happy to be a survivor.

Hey Tim, Nice to hear from you. Lets see, my taste is a lil off but barely (i dont know if that is really from the rad. or the stopping smoking though) I still can not eat "spicy" foods,and i still have problems with the "sweet" stuff to, just doesnt taste as good, i can not drink cokes anymore ( and i was hooked on diet cokes before all this ) as far as my mouth being dry, yes, that is still an issue, but not near as bad as before, but yea, i still carry water where ever i go! I go in on the 28th for my 6 month check up and i can tell im already panicking a lil, i dont really think about it until i have to go in, i hate the feeling this has left me with, i keep telling myself, whatever will be, will be, but that doesnt help at all, i guess its a mental thing im going to have to get over and hopefully that will come in time! Have you heard from anyone else? I dont see much of the ol one's still posting, i guess we all move on and that means from here too! Kinda sad....i met so many great and supporting people on here! NO, the really sad thing is...there are "NEW" one's to take our place on here, I pray they find a cure for this someday. Ok, enough of venting...haha, thanks for responding and it was great talking to you, keep in touch, i love to hear the progress of someone else too!!! Hope your feeling GREAT and staying HEALTHY.

Sorry Tim, i left out the "energy" thing, yes i have some days where i have NORMAL energy but there are some days where im soooooo tired, but doesnt that come with age? Haha, and trust me, i have aged from all this, ten times the normal rate!!!

Well i went to my 6 month, check up and everything is a-o.k. i couldnt have had better news! It sure takes a load off, now i have my 9th month check up to look forward to, haha. I will have to say, i met some really nice people today at M.D. , its funny, when i started off, i was always so scared to talk to anyone in the waiting rooms, now i figure...we all have something in common, maybe just a different kind of cancer, and now that i have been through it, i can talk to anyone up there, now i know the "TRUE" meaning of being scared, and it sure isnt meeting new people! Hey, thats another new blessing from this...and all these "new blessings" i thought i learned, they are really just "old blessings" i just never had my eye's open until now! I still would love to hear from everyone, and i hope you all are doing well!

Well i went to my 6 month, check up and everything is a-o.k. i couldnt have had better news! It sure takes a load off, now i have my 9th month check up to look forward to, haha. I will have to say, i met some really nice people today at M.D. , its funny, when i started off, i was always so scared to talk to anyone in the waiting rooms, now i figure...we all have something in common, maybe just a different kind of cancer, and now that i have been through it, i can talk to anyone up there, now i know the "TRUE" meaning of being scared, and it sure isnt meeting new people! Hey, thats another new blessing from this...and all these "new blessings" i thought i learned, they are really just "old blessings" i just never had my eye's open until now! I still would love to hear from everyone, and i hope you all are doing well!