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Joined: Nov 2010
Posts: 27
Mrs. V Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2010
Posts: 27
After a week on Amoxicillian and Naproxen, Tom's jaw has abated, somewhat. It is still 100% numb from the mid lip line to the mid jaw line. From mid jaw line to the end of the jaw/ear, it is still sore and down right painful, at times. They took him off of the other 2 meds and ordered Prednisone. This is the first morning on it.

He was given Cisplatin again yesterday and gained a pound! YIPPEE!! The decadron they gave him took the pain away as a side effect but the numbness was still there... Oral surgeons looked at it and said that it was highly unlikely caused by anything dental.

Getting him to drink is a chore. He is on the feeding tube 100% as everything tastes like soap. :o( He is getting 7 cans of Jevity over 12 hours. We are supposed to do 24 hour drip, but he still wants to work without dragging the back pack... So, we slam it into him at 140ml/hr (His choice, not mine)

He has lost most of his beard on the sides and the hair, in the back, is almost completely gone. He is also getting small lesions on his face. We are keeping those sprayed with peroxide to keep infection away. :o(

This is us today! He is in with a client right now. I am sitting in the waiting room just in case. :o) I text him once an hour to remind him to drink. He can only tolerate 1/2 Gatorade and 1/2 water and those Vitamin Waters, the XXX one and the Fortifight one by Sobee. At least he is drinking something! :o)

My thoughts are with all of you survivors out there! Keep those chins up!! Life is too beautiful to ever give up!!

Mrs. V

(This is my high schoolers nickname for me!)

I LOVE my job!!!


Wife of Tom, 42
SCC/Tonsil DX 9/23/2010
PEG/Port 11/2010
TX Begins 11/16/2010
Chemo ended 12/28/2010
Radiation ended 1/6/2011
Neutropenia 1/7/2011
Osteoradionecrosis 09/2011
Jaw Resection/Flap 01/2012
*********************
How do you want to be remembered?


Joined: Sep 2009
Posts: 96
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 96
Wow, that is a lot of cans to push through. I have been on a g tube for almost two years now and am on 24 hr feeds and know how he feels about dragging the back pack. You might ask about 2 cal or something else with a higher calorie content so he doesn't have to take as many cans. It can drop your can rate almost in half depending on what is available to you.

Glad you were able to find something to help with the pain even if it was a side affect. Will be keeping you guys in my prayers.


31 at dx 9/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
HBO for ORN March & April 2010
Fibula flap 5/10
Joined: Sep 2006
Posts: 8,311
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
He still needs to exercise those swallowing muscles as they can "forget" their purpose quickly which can lead to post Tx swallowing problems.

Also make sure that he is getting at least 48 ozs of water (in addition to everything else)to prevent dehydration and everything that follows.

I also lost the hair on the back of my head and my whiskers. The only thing that didn't come back was the whiskers below my chin line.

Be careful of the Cisplatin as it can cause permanent hearing loss so if he hears "ringing in his ears" he needs to tell his docs immediately. There are basically 2 accepted delivery methods for Cisplatin. Three times during the radiation and every week or six times during radiation. The ones here that have had the weekly method do not seem to be affected by it's nasty side effects as much as those of us that got the BIG 3 method.


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: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2008
Posts: 3,082
Hi Brenda

it wasn't clear to me whether Tom was on Jevity 1 (250 cal)
Jevity 1.2 (285 cal) or Jevity 1.5 (355). It only takes 5 cans of Jevity 1.5 to match 7 cans of Jevity 1. Doesn't sound like much, but trust me, I know from experience every can matters. I can't emphasize enough David CPA's point on swallowing despite the tube. Try and have him take the water by mouth. Try some soups or blended stuff as soon as possible, as it's amazing how some foods "taste" okay and others "soapy" or worse. No telling which will be which.
On the positive side, his jaw pain and numbness sound about average IMO.
He is lucky to have a cheerful caregiver like you.
Charm

Last edited by Charm2017; 12-09-2010 07:55 AM. Reason: typos

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

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