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#74134 05-09-2008 10:13 AM
Joined: Mar 2008
Posts: 67
Frank W Offline OP
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Posts: 67
Hello everyone,

I have not checked in with the group in a while. I have been living one day at a time through my 30 IMRT treatements and my 2 doses of Cisplatin. My last IMRT was Wednesday of this week and my last dose of Cisplatin was April 21st.

The Dr. had me in for hydration yesterday and wants me in for another 2 liters tomorrow. I get all of my nutrition orally as I did not get a feeding tube. Have been living on Skandi shakes and Ensure. (Hold my nose and slam!)

How soon before some of the more egregious side effects dissipate? The last few days I have vomited due to thick mucous. I think I actually feel better today but am not yet certain.

I wanted to take a minute to check in with people that understand. Thanks for being there.



Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08 (premature resection)
2 additional sub cm nodes
Tx plan at Stanford: 30 x IMRT, 3 x Cisplatin - Started 3/27/08 - Could only complete 2 doses of Cisplatin due to hearing loss.
p16+


Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
Joined: Feb 2004
Posts: 598
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Frank, congratulations on completing your treatment!! Seeing that you went through treatment at my alma mater, I know you were in good hands. (I grew up in Redwood City, BTW)

As you peruse the board, you will find a wide variation on experiences. Some get worse for the first 2 weeks or so after treatment. I got better fairly quickly. I also did not have a PEG tube, and just drank lots and lots and lots and lots of water. ;-)

I also forced myself to get outside and get exercise, which helped my appetite. I always had the water bottle with me!

Take it day by day, enjoy the improvements, and don't get too discouraged by any perceived setbacks. Keep posting here as well!!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
Joined: Apr 2005
Posts: 2,676
JAM Offline
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Hi, Frank, if you continue to have thick mucous problems, you might ask about renting a suction machine for a month or so- if could help clear your mouth and throat before you eat and make that process easier. Since you just finished rad tx., it will take some time[ a month or more] to gradually get over the effects. The most important thing now is to be very vigilant about staying hydrated and getting an aqequate amount of calories. Hooray that you are over this tx. hump!! Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
JAM #74143 05-09-2008 05:06 PM
Joined: Sep 2006
Posts: 8,311
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Frank,

I also did not have a peg and it took me about 2 to 3 weeks post Tx to finally walk out of that nasty tunnel. Hang in there, you're soooooo close to the road to recovery. Just one more turn or so.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Feb 2007
Posts: 61
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Posts: 61
Frank,
I rinsed my mouth with club soda to help with the mucous. It does get better one day at a time.


SCC, right tonsil, T1N0MO, G3, HPV-33 positive, 7 wks IMRT 2/21/07-4/13/07, 48 year old female when diagnosed, non-smoker, weekend wine drinker, tumor and both tonsils removed. Ethyol for 3 weeks; no peg; only minimal longterm side effects
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Frank

Throughout treatment, lots of mucous and my first two weeks PT everything got worse not better. Even had to suck down nasty VHC instead of Ensure Plus. BUT Seltzer water (in cans, not big bottles so fizz is there) really helped. Just rinse and spit. I went through about 12 cans a day and they still remember me at the Safeway store as I would buy my 60 cans.(too tired to drive to Costco and deal with mob and lines)
It will get better and better. congratulations on finishing treatment


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2004
Posts: 104
Senior Member (100+ posts)
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Posts: 104
Hi Frank,
Way to go getting through your treatments!
Good Job! Glad to hear your getting help with the hydration, that seems like the key! I swear by Mucinex to help with the mucus, and if you have one, run the humidifier or if not, could keep a pan of water on the stove to help. Plan to sleep and heal for awhile. My dad overcame the mucus at about 3 wks post TX.


Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"

Joined: Oct 2006
Posts: 383
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Posts: 383
Frank:
Great Job on getting through!! The mucous issue is a real drag but you will improve daily. Mine was also so thick it made me throw up and with the throat and mouth the way it was that was a horrible feeling! It will get better, stay hydrated, rinse with whatever works (I used the water, salt, baking soda solution a lot!), and oh yeah, did I say stay hydrated! You'll be fine now. Think positive thoughts and remember, every minute that goes by is another minute you are further along in the healing process.
Regards,
Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Joined: Mar 2008
Posts: 67
Frank W Offline OP
Supporting Member (50+ posts)
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Joined: Mar 2008
Posts: 67
Today is a hard day. It seems that the sores in my mouth are getting worse. In addition, I have gained about 15 pounds in the last couple of days of water weight. Also, for the last two nights my wife has said that I have had terrible sleep apnea. Did anyone else experience apnea? I assume it is related to all of the mucous etc.

I see the Dr. tomorrow. My plan for the day is to take my allotment of narcotics and get by. Thanks for letting me complain a little. I'll try to be more upbeat on the next post.


Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
Joined: Aug 2007
Posts: 580
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2007
Posts: 580
Frank,
I know this is a rotten journey but the fact that you are able to complain about it is good. Everyone here has complained about something at some time during their treatment and recovery. With every complaint someone has learned something. Don't worry about being upbeat, when you vent I would suggest that something positive will come from it.
I suffer from sleep apnea and use a CPAP machine. My wife used to complain about my restless loud sleeping. Now she wakes me to make sure I'm still alive. You are blessed to have a partner that looks out for you at all times. Talk to your doctors and mention your wife's concerns about your sleep. I'm sure you will find a solution.
Cheers,
Mike


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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