#57159 10-16-2005 03:52 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | John has been sailing along fairly well since last rad [7-8-05] had the peg out 8-24-05. Since then, we have experimented with lots of foods to see what was tolerable. However, over the past 2 wks, the phelm and muscous problems have returned big time and his tongue is really sore. He started on the Mucinex last week[read about that here-thank you] and it is helping. But he is a little discouraged at this point about how his mouth feels and that he isn't gaining weight. We go for the 1st scan post tx Oct 26th.
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
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#57160 10-16-2005 04:54 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Has he been checked for thrush?
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#57161 10-17-2005 02:52 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | I can't see any signs of thrush, but his mouth feels like it did the 1st couple of weeks after rad ended, plus his cheeks are swelling in odd places again.[a spot here,a spot there] I have suggested to him that he has been so busy siding his new garage, that he is neglecting his mouth regime :rolleyes:
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
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#57162 10-17-2005 09:56 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Did you say he is putting siding on his garage? I would say he is doing remarkably well. I was totally disabled for almost a year post Tx and was in really good shape prior to treatment. I battled thrush for months as well.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#57163 10-18-2005 03:03 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Gary, I always appreciate it when you step in and remind us of your experience. I get so impatient with things, and with repeats of the thrush, and I need to be reminded that the course of recovery is a long slow road sometimes. I can look back at a month ago and see I'm doing better, though.
Amy, when my mouth got dryer it seemd like the lumps and bumps I had on my inner cheeks and lips that formed during the rad got bigger and bumpier, but I think it's just they were more noticable without all the mucous in there. I also had a week or so about a month ago when a bunch of mucous seemed to come back and I think it was just seasonal allergies.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#57164 10-18-2005 05:49 AM | Joined: Jun 2002 Posts: 206 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jun 2002 Posts: 206 | Hi guys, I had the same problem with my mouth.
Plus, I was in the hosiptal the last part of my
treatment because I couldn't swallow and had
thrush. So much fun we had then.
Cathy
Cathy
SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
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#57165 10-18-2005 07:42 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Oddly, if I drink a can of soda, I start developing thrush with my tongue getting sore, then the throat, then the sides of my mouth. I down some Nystatin for a few days and it goes away. I have had 3 cans since December 2003 and it has been the same each time.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#57166 10-19-2005 07:05 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Well,that is odd Ed. Is it diet or regular? Thrush feeds on starches and suger.
I don't get thrush from drinking soda, however, if I start to get thrush, soda burns my tongue. When that happens, I take my Nystatin more than once a day and problem goes away within a few days.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#57167 10-19-2005 07:30 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Only tried a regular Coke twice, regular Ginger Ale once with the same results: burning, brown spots in 2 days. Went away in 2-3 days with Nystatin.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#57168 10-19-2005 03:45 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | I'm gonna print all of the above for John tonite. Not only did he side the garage [ in cedar boards, he used cedar shakes for accents, he wired it and installed all the light fixtures for his "workshop" area, hung a double door and a myriad other things. {However I still have 3 leaky faucets in the house- you guys know about priorities-right]  I have subtlely suggested that all of this activity might have something to do with his failure to regain any weight, but hey- what do I know. Amy
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
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#57169 10-20-2005 11:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Amy
Do you think you could send John over here? He has done more in the short time since the end of his treatment than mine has done in 2 Years!
Don
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57170 10-20-2005 11:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Amy
Do you think you could send John over here? He has done more in the short time since the end of his treatment than mine has done in 2 Years!
Don
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57171 10-20-2005 11:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Amy
Do you think you could send John over here? He has done more in the short time since the end of his treatment than mine has done in 2 Years!
Don
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57172 10-20-2005 11:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Amy
Do you think you could send John over here? He has done more in the short time since the end of his treatment than mine has done in 2 Years!
Don
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57173 10-20-2005 11:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hi Amy
Do you think you could send John over here? He has done more in the short time since the end of his treatment than mine has done in 2 Years!
Don
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57174 10-20-2005 11:48 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | well it happened again ...a poltergeist took over the keyboard! :rolleyes:
as I was trying to say ..the weight will come back in time. Keep pushing the calories on him.
Just a thought, you guys have an 18 month old to look after now, you are both going to lose weight trying to keep up.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#57175 10-20-2005 02:38 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Marica- it must be an early Halloween spook. I will see about sending John, but you gotta try to force feed him 4 times a day.[You'll want to send him back in 2 days]The garage\workshop has been his dream for 3 yrs. He broke ground and had the foundation poured a couple of months before the ca dx. We hired a framer and roofer to get in dried in before his surgery. He has done all of the rest of the work. I think he made up his mind that if he never did anything else, he would finish this building. It is quite goodlooking and I've been thinking about putting a picture of it in our profile instead of one of us. {John's preference]I have lost 5 real lbs. since Elli came to live with us. That's o.k. but at 101, I don't want to lose any more.
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
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