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#176902 01-25-2014 05:28 AM
Joined: Nov 2013
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BrianPK Offline OP
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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
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Jun 2007
Posts: 10,507
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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 smile 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.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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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.



Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Aug 2011
Posts: 269
ngk Offline
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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.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Jul 2011
Posts: 945
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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


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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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


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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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...




Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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Joined: Nov 2013
Posts: 104
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.




Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Joined: Dec 2012
Posts: 38
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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. smile


Female 34. Non smoker, casual drinker
Dx July 12 stage 1 scc to left tonsil n0 m0. Hpv + 16 . 7 weeks daily rads finished sept 2012. 3 mth scan - low activity in primary spot hopefly t's just inflam. 2013 Abnormal tissue next base of tongue, came back negative. 5 month scan all clear!!!!! Yayy
Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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1st soup, cream of chicken, eaten! First oral food since before xmass smile I'm amped!


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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