So I'm in a new forum. YeeHaw.

The healing will begin sometime between now and 3 weeks from now, or maybe sometime sooner, but in most cases not, but you're young, so we'll see, seriously, you'll be out of the woods in no time; unless you get the flu...

Anyone else feel like the the sentence above describes a lot of the answers we get from the docs at this point? Its like sitting between John Cleese and Graham Chapman on the way to see the dentist.

I am trying not to be to put off by the variety of their opinions, I'm sure it's true that everyone heals at their own rate and that we will just have to see how long it takes till I can pound that first bacon cheeseburger.

On to how I have been doing since my last Rx:

Overall I feel pretty good.

OMG-WTF-BBQ the back of my throat is raw! The mucous has been nonstop thick and yellowish. My stomach is in a constant state of to much mucous being swallowed to feel good. Sometimes I cough until its almost pure blood coming up. And to Tee things off I have on occasion witnessed stamp size pieces of dead skin come up in the sputum.

I feel like I would heal a little faster if I could give any of the above malfunctioning parts a little bit of a break from each other.

Seriously tho do I feel better than last week? the answer is yes. I made it thru to the other side of treatment. Morphine however was not beating the pain back with a big enough stick so they gave me this stuff called Dilauded.

Now I do wacky stuff that entertains my wife like fall asleep almost mid-sentence when talking to her, get my laptop set up booted up and fall asleep. Almost sold my car and bought a truck. (no I havent been driving) But the pain is greatly reduced, but I have have to take it more often.

Which opens my safety net for some night time OMG gotcha moments when it hits and you have no defense up.

In all seriousness, could someone comment on the patches of skin coming free on the serious deep and bloody coughs that happen occasionally? is that normal?

Brian, congrats on finishing your treatments!!! recovery can be a very long frustrating process full of ups and downs. Seems like every time you begin to feel like you are finally getting better another setback sneaks up on you and boots you back a few steps. This will be part of the "new normal" recovery phase. In time you will have more good days than bad ones. Just take it one day at a time.

What you can do to help speed up your recovery is to focus on your intake even more now. Your intake should be the minimums of 2500 calories and extra water of 64-80 oz daily. If you can push yourself to take in even more calories like 3500 daily that will help your recovery even more. If you add some high protein whey powder to your beverages that will help with healing too. Check that one with your doc, ask him about high protein helping with your healing. By taking in lots of water it will help thin that thick ropey mucous and help you to get rid of the hunks you are coughing up. Believe it or not, thats fairly common. Wish I had a buck for even time I coughed up those big hunks of gunk, I would be a rich woman If the thick gunk becomes too much you can ask your doc for a prescription to get a portable suction machine to use at home. Also ask the nurse to suction the gunk out when you go for check ups. Its a temporary fix but it will help.

Hang in there, very soon you will begin to feel like you have started to turn the corner and made some progress. Only a couple more weeks til you walk out of that tunnel.

So I got waylaid by a fever/flu which is pretty foul business considering the condition of my throat at the moment. It started last week Friday when I was going to bed. I had a roller coaster of temperatures all weekend. Monday AM I placed a call to the cancer center and they wanted me to come in.

So yesterday I was feeling pretty poorly when I got to see the NPs, They took a sample of the sputum and gave me a bag for hydration. and asked me to come in the next two days.

I had been adding about 150ml of water to every one of my feedings, plus the additional 60ml syringe before and after. I still had no idea dehydrated I was. When I got home yesterday I urinated and it was pure brown... I guess the combo of fever, spitting up every thing was way more going out than going in.

I was having severe pains in the throat due to a vomiting session Monday morning, plus all the hacking and gagging. It was as raw as its ever been, even cold water was was too much too try to swallow. It was the first time I couldn't swallow anything yet and I was getting a but nervous. but as id this morning I can do ice water again. But I still am having sweats.

I have two more hydration days at the MO office, not sure how much its going to help but I'm going to do as they tell me to do.

I do feel like I turned a mini-corner towards recovery with being able to drink a straight glass of cool water, even had some heated broth the last night. So even feeling like crap I think things are improving.

So sorry it's been such a rough road. Hang in there and even a mini corner is something to celebrate. It will keep getting better, really. Rooting for you and best wishes! Will look next week for another post and hope to see another mini corner turned.

Hi, Brian
Glad you are able to drink water again - and even broth! It will help when your electrolytes and hydration are both in a happier place.

If it is not bitter cold where you are, try for a little walk out of doors. I am convinced that walking our dog helped my husband with his physical and emotional recovery.
Best wishes to you and your wife.
Maria

Hello Brian:
Congrats on joining the post treatment group. That in itself is turning a big corner regardless of how bad your symptoms are.

I guess I am very lucky because I didn't have any of the stuff you've got going. I'm 30 days post treatment now and mucositis and ropey mucous are about my only two problems. The rope is so thick swallowing it is impossible, I just have to gargle with warm salty baking soda water to soften it so I can hack and spit it out. When I can remember I take a daily Mucinex; that helps soften it too.

I can't comment on the postage stamp chunks you're having. Hopefully they will not last long.

Hang in there, it does get better. I can actually taste maybe 25% of what I eat. And being able to taste food will make you want to eat again.

Tony

Hey folks and well-wishers,

The fever has been gone for over 24 hours now and I felt pretty good all day long. Yesterday i forgot to take my Prilosec in the am, huge mistake... I was overproducing mucus that was thin and bubbly all day long and probably swallowing too much because once during feeding I burped and got the machine going. It culminated last night with me vomiting to the point of dry heaving. I had some more patches of skin come up and a fair amount of blood.

I eventually just swished with BMX to kill the pain, took a max dose of morphine and 2 Ativan and just knocked myself out.

Today it was much slower producing and thicker. I felt considerably better all day. The throat is still extremely raw, apt to bleed still with little agitation. But I do feel a significant improvement over yesterday. My stomach has been stable all day. I've really increased my hydration today to compensate for yesterday. I can't help but feel that the amount of acid due to saliva and vomiting has been hurting my teeth but what can you do...

I feel that the healing has taken a sharp turn for the better lately. I am still getting random sweats, but my temp has not risen into the 100's since last week.

My throat feels infinitely better, but I still can't eat yet. However swallowing water is much easier over the last two days. Every day it feels easier. I haven't had any need of the BMX for the past three days except when I first wake up.

I think I may attempt to eat some soup in the next few days.

Hi Brian,
Great that your feeling better and going to have something to eat. I'm a year and a half post treatment and can pretty much eat everything now except sometimes I struggle with meat.

1st soup, cream of chicken, eaten! First oral food since before xmass I'm amped!

Great news, Brian! I bet it felt wonderful to finally eat some real food again.

Here is a list of Easy to Eat Foods . These foods are smoother in texture and more bland than most normal foods. They are great to sample when trying to relearn to eat. Take your time with eating and take smaller bites. Have a glass of water or milk (chocolate milk works too) handy when sampling new foods. When you come across some foods you think you always loved, they may not taste like they used to. The foods can be too spicy, might even feel like your mouth is on fire. the milk will help with this. I almost fell over one time when I tried some Chinese noodles in a buffet only to have my mouth on fire. I gulped the chocolate milk down to soothe the burning sensation. This is why I am telling you to take small bites and eat slowly. You just never know how something will taste now. Keep trying things, what may taste awful today might be the best thing you ever ate in 2 weeks from now.

Best wishes with everything!

Outstanding Brian, I know how you feel. I was in your shoes just a week or two ago. If things go for you like they did for me the next couple of weeks you will see dramatic improvement to your eating and quality of life.

It's getting to be pretty nice now, can eat most anything, and enjoy it.

Tony

A couple of things - I find that having my water in a bottle makes eating much easier as opposed to a glass. A water bottle seems to deliver the water to the right spot. Item 2 is that you could out your family and friends on alert when out and trying new food. Once they know your tolerance level, they can warn you. That is an awesome help I have enjoyed. Good luck.

Donna

Its been a couple of weeks and I thought I would give an update. I am almost 4 weeks out and I feel the worst is over at this point but I did have a couple of real speed bumps in the last two weeks.

The pain I think peaked for me 1.5-two weeks ago and lasted about 4 days. I was still taking the Dilauded(Hydromorphone) and it was doing its job. I felt no need to increase dose or anything. I had a couple of rough nights but I made it thru.

Now last week was real trip. Sunday or Monday, I had tapered my Ativan to 1 pill instead of 2 at bedtime for maybe (which I thought was plenty of taper). I had one pill left on Weds.

I was also feeling much better and was considering going to work Friday since I was able to eat a little oral food, cream of wheat and chicken noodle soup. Tues I started getting sweats without temperature, not too terribly bad but it was concerning, I had my Onc doc followup on Weds so I waited to ask anything about it. By Weds AM the sweats were considerably worse. I asked the Doc not thinking to mention the Ativan and she had blood drawn to test thyroid and testosterone levels. She asked about my pain, I said considerably better, she suggested tapering off the Hydromorphone, but she did not give me a specific regimen or if she did it was on deaf ears. So I went home and immeaditaly started tapering from 3mg every 3hrs to something like 1.5 every 4-5hrs.

By friday I was in the fetal position on my bed, having extreme hot-flashes and vomiting like it was a second job due to an increase ropey saliva issue, it was building up in the back of throat to the point it was causing gagging. I figured that this was the portion of my throat that was healing/hurting at the time and it was what I had to deal with. I was also thinking that my glands (thyroid due to rads or testes due to chemo) had crapped the bed and causing the hot flashes. The doc had not called to give me my results of the blood test, and by the time I had my whits about me it was too late to call.

So all weekend I fought the sweats and the vomiting until Sunday am I started feeling a lil better. I did my best to stay hydrated, and was successful(kept my pee clear or light yellow<--Hydration science right there folks!).

Monday I call the Doc, got a nurse practitioner, and asked the blood results and she said every thing is fine. At this point I was flummoxed and asked why the hell am I getting the vomiting and the sweats out of nowhere then. She asked had I changed my meds? I said well yes and explain my 4-5 day taper on my Ativan, and my Dilauded reduction. She was quite surprised at what I thought was tapering, and quickly figured out that I had gone thru opiate/benz withdrawal concurrently inside of 72hrs.

Not fun. she said I will likely have some symptoms of withdrawal as I continue to taper off the hydromorphone for the next couple of days to a couple weeks. She said since I had halved to quartered the dose I was on and made it thru the shakes, the worst is over. Holy hell what a trip.

Today I feel great, some medium-level(3-4 out of 10) throat pain but nothing like I've had in the past. I actually decided to work a half day at the office.

So fair warning to all the folks on opiates and other addictive drugs, ask your doctor for a taper schedule and make sure you have enough to make it all the way thru the taper. Going Cold turkey or even semi-cold turkey on one is no joke. Doing it with two different addictive drugs at once is pure holy hell.

I'm about 4 months out. Lingering sore throat issues, and persistent dry mouth are about my only complaints. Some gum recession has occurred as well. Likely opening me up to a host of future dental issues. Can't complain too much to be honest considering what some are going through.

5 months out.

Crud in throat during sleep. Extreme cotton mouth when I wake up. I can build a small amount of saliva in my mouth in the day if I work at it, but it's thicker than it used to be. But not enough to work outdoors without a water bottle, It gets so dry I practically choke if I'm not paying Attn.

Under my neck is rather tight when I look up or to the sides. Feel like the space between my teeth is larger, and collecting more food than it ever has. So I use the water pick after meals or floss if I'm on the road.

Gag reflex has doubled in sensitivity compared to before treatment. It's hard to brush my to tongue clean. I really long for the feeling of a clean mouth.

Sore throat is gone when I eat. I can eat everything I want except for spicy food, dry white chicken and overdone pork chops. Chocolate has lost it's awful flavor, but it's still lagging the goodness I remember.


All in a all can't complain too much