Well I guess my somewhat "easy" ride is about to come to an abrupt stop! I woke up this morning very nausious from all the built up thick mucous and when I began brushing my teeth I started to gag and once that starts there is no stopping it! I began to dry heave BAD and coughed up some blood! I do not know if this is normal but I will speak with my RO today at treatment! I also have a small lump on the right side of my neck by my corrated that is tender to touch. My RO doesnt seem to think much of it saying it is just irritated and swollen from the radiation but I am honestly not buying that since it feels exactly like the lump on the left side that turned out to be a 1.7cm tumor! It is getting progressively harder to eat, I have basically been dealing with a sore throat and tongue since february but it is almost becoming impossible to swallow even water! Lol maybe I should have taken the PEG! Oh well, only 12 more treatments after today and I weighed in this morning at 192 lbs so I lost 8 lbs so far! I will keep you all informed!

Jim, what a difference a week makes. Last week you were sailing thru thi, Im sorry to hear of your struggles. Get your lump checked out by one of your other docs. Only losing 8 pounds is very good. Its never too late to get the PEG tube, it can be the most important accessory you will ever have.

Best of luck with your last few treatments.

Jim,
My sis has only 11 treatments left after today and she will be getting the PEG tube on Friday. After getting a few transfusions of fluids, and the mouth/throat pain increasing, its the best thing for her. My understanding is that it is invaluable in the days and weeks after treatment as well. Camille was against getting the tube until eating and drinking became such a struggle. Its less stress on her with the tube. I hope you are able to get some relief soon. Stay hydrated!!

Jim,

Speaking as one that didn't have a PEG, please stay on top of your daily fluids and daily calories. Shoot for a MINIMUM of 48 ozs of water and 3000 calories of VHC (only 6 cans). Alternate water and food every 2 hours that you are awake. Do the math and determine how many 8 oz cans you need to swallow every 2 hours you are awake beginning with the minute you wake up and the last minute before you go to sleep. DO NOT think you can fall behind in either dept today and make it up tomorrow because tomorrow will be worse than today.

Re the nausea which was my worse enemy, around this time I was only drinking room temp liquids and I would stand over the sink and drink a can non stop and then hold my mouth shut with my fingers and close my eyes until the urge went away.

Don't be afraid/ashamed/pissed off whatever to consider either a PEG or the nasal tube. The nasal tube is far easier to get put in as there is no surgery but it is kinda of a nuisance and only meant for short term uses. Either are better than adding more stress to your body by depriving it of much needed fluids and fuel when it is under extreme attack.

Do not be afraid to continue to try different meds until you find some that work.

Remember, I'm almost 100 years older than you so if I can do it I'm sure you can to.

Spoke with my RO this morning saying that the blood was from my throat being so raw and me dry heaving so hard. He offered me the day off tomorrow but I think I will pass! I will get 2 off and do not want to be there 1 more day than I have too! He kinda yelled at me because I am only taking the percocet 1 maybe twice a day! I am currently as I am writing this slugging down a bowl of oatmeal and drinking a CIB VHC! Going to drink a ton of water the next 3 days no matter how bad it hurts! Oh and David I think I will lay off the golf and tennis the next 2 weeks...lol!

everyone listens to me eventually....lol

but just don't be surprised if your 2 week layoff turns into 2 months.

Jim,
Please get the PEG tube. I had my surgery 3/25/09 with 2/3 of tongue removed, radical right neck resection. Each day following the surgery it seemed to get more and more difficult to swallow. It got so that I was using a medicine dropper and putting fluid down my throat. I just could not get any food down at all. After 20 days, I felt like I was drifting away. My skin was starting to wrinkle and I knew I was getting dehydrated. I went to the surgeon's office and when he saw me he immediately put me on a IV right in his office to get some fluids into me and ordered a PEG tube be put in the next day. It was a lifesaver. I was using 6-8 cans a day plus water. I had all medications put in liquid form so I wouldn't have to swallow anything. I had the tube out 1 month ago. I was trying to please everyone by being tough and it almost killed me. It's called humbling ourselves. (NOT EASY). My thoughts and prayers are with you! Good luck.

I didn't have a PEG tube either and lived on Ensure Plus for about 4 weeks. I don't think VHC existed back then. Unlike David, I would keep a can by my side and sip at it all day. I could not bolt down a can all at once. I did not have nausea, but I did gag on the mucous. A suction machine may help with the mucous and try the selzer that someone says works. I rinsed a lot with baking soda. I have also had a GI tube after surgery. They are not pretty, but if it is only for a few weeks, it would be my choice. Hope you are feeling better.

Take acre,
Eileen

Speaking of laying off the golf and tennis, my husband just started playing golf again (last tx was 5/8). Anyway, he has lost about 80 lbs (even with the peg tube, removed on 6/26) so his golf swing has changed dramatically! (and not for the better.. )

He says that his stomach is not in the way anymore

lol David you are my driving force! Everytime I tell you something you add a month or 2 onto it...lol! I am pretty sure unless I wake up in the hospital with a PEG tube installed I will not be getting it...not trying to be tough I just dont want the damn thing! I have ate 2 bowls of oatmeal with a scoop of protein powder, 3 cans of VHC and 5 bottles of water already today. I also took a nap! I feel sooo much better than I did this morning! I think the 4 straight days of playing tennis in the florida sun probably wore me out and caught up to me! Maybe I will wait till the sun goes down and play....lmao thats for you David! The only problem with a nap is my throat dries out so bad it takes an hour of light drinking to get it feeling tolerable again! 80 lbs with the PEG tube.....jeez! I gained 20 for this treatment so if I drop that 20 then it will ok, I can also afford to lose a couple more LBS! My ideal weight is right around 175, I am 192 now!

Everytime I tell you something you add a month or 2 onto it..

Just trying to ease your stubborn ass into this treatment and recovery process.

I have 11 treatments then whatever "boosts" I will get. I did not want the PEG either. Last weekend when I could not get water down w/o my mouth feeling like it was on fire made me change my mind. Best of luck to you JimB. One day we will be able to pass on our experiences as David and others have to us.
Thank you everyone,
Kenny

I'm glad to hear that everything seems to be working out Jim. From the sound of things you do not need a PEG at this point as you are eating well and your weight loss fairly minimal (I lost 70lbs).

My original thought was you were swallowing blood and that was making you sick as this had happened to me. I had several episodes where the area of my necrotic lesion in my mouth would ooze this thick, black, partially clotted blood that looked kind of like the black venom stuff in Spiderman 3. It was pretty disgusting.

Keep the chin up and be well my friend

Eric

Hey Jim

As an original PEG-objector (to the point my first posts were to relaunch the PEG wars), I hear you loud and clear. More power to you brother. It was an exceptionally satisfying feeling NOT to get a PEG yet finish all the radiation & chemo. I NEVER got more than 2000 calories down a day let alone much water but survived. No dehydration - just 40 lbs weight loss.
People who say the Cancer TX is like a marathon, in my experience have never run one. ( I have done 4, with best time of 3 hours, 15 minutes). The marathon part is life afterwards with the new normal. The actual TX is much more like a 10 K race, and you are near the 4 mile mark when the going gets tough but the tough get going. Keep the faith
Charm

Very well put Charm I like that! I have to say waking up this morning I do not feel as nausious or tired as I did yesterday but damn is my throat sore and swollen. I does however seem to get better throughout the day and the morning is always the worst. If I fight like hell and endure the pain in the morning drinking water when the percocet finally kicks in I am able to eat, right now it would be pretty difficult! At least I have 2 days off coming up maybe that will give me a little bit of relief!

My mother just completed treatment for her fourth round of this stuff. She admittedly was overweight when she began but over the last couple of years she lost 96 lbs. By this time, she was finding it nearly impossible to eat/drink, was very dehydrated. We were told by her speech therapist the other day that she was literally "starving to death" when she went in the hospital on 6/29 and was shocked to hear that we had asked her dr. for a PEG and he said she didn't need one. It was unbelieveable to us to see her gain weight so quickly with the PEG - she went from 95 lbs. to 116 in just 2 1/2 weeks. I kept thinking something had to be wrong w/the scales but that's what the hospital said. It was the best thing she's had done in a good while. I know you don't want it and if you can get along without it, I'm extremely happy for you. Just remember to get help when you need it. I can tell you now it would have saved her a lot of suffering. We've learned a lot of things the hard way. Good luck - you sound like you can beat anything !!!!!!! Keep it up!!!!!!

Went in for radiation this morning and the machine was down....so instead of me coming back later in the day they told me to take the day off since my throat and tongue were so swollen and sore. They also gave me liquid morphine for the pain, though I didnt ask for it they told me to take it. The 1 thing that I ask for they cant do anything for and that is the feeling of someone sticking there finger down my throat all day! That is what is making me nausious, apparently it is the thick mucuous stuck in the back of my throat! Nothing that I have tried gets rid of that feeling? Any suggestions???

Is it far enough up that a portable suction machine can get to it? I didn't have one for the mucous but sure wish I did. It has helped some people.

Take care,
Eileen

Echoing Eileen's post, this time around the mucous was much worse and the portable suction machine was a big help. If you can gargle with Seltzer water, that was how I got through my first round with no PEG. I swallowed a sip of Ensure, then gargled with Seltzer and spit out the mucous, sip of Ensure. Although it took a half hour, the feeding tube with gravity bag takes just about as long -(although I now admit the PEG is a very easy way to take in nutrition)
I hated the dry heaves, especially since some acidic stuff would come up and burn my throat. Nothing helped the dry heaves during the second round of radiation which thank God only lasted a week.
You can do this, and don't discount the pain medications. Get yourself a fentanyl patch (start with 25mcg, and go to 50mcg quickly) as they really helped with numbing the sore throat and letting me swallow.
charm

Jim,

You have done a great job so far. Unfortunately, it does get harder. My husband got the PEG at the halfway point and we weren't sure if it was a good idea. He was able to take food orally at that point. Now he is done with radiation as of last Tuesday and the PEG for him has been invaluable. He has many tongue and mouth sores and so swallowing has been difficult. We hydrate all night with the PEG. Without the PEG he would have to have made many trips to the hospital to hydrate. A lot of people go to the hospital to hydrate with a IV and have done well without the PEG. For us it has helped get through this week. It really is a personal decision. Save your strength, the radiation builds and hopefully does its job but it takes a toll on your mouth and neck.

We are sending our prayers and good wishes to you.

Vanessa and Jeff Watt

Jim

HAPPY BIRTHDAY, at least I hope you can be happy today.

Hey stubborn ole Italian guy, where are you?

Jim, hope you are enjoying your special day. Happy Birthday!!!

Dear Jim,

Happy Birthday!!!!! Have a great day!! You deserve nothing but the best!!

Susan