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DonB #79082 08-21-2008 05:43 AM
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The hair on the back of the head will grow back but it will take at least a year. At least we can't see it.


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.
davidcpa #79103 08-21-2008 10:21 AM
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Wow,
I had no idea it would take that long frown

What about the beard?
Everything below the jaw line fell out after week three and now the cheeks areas are patchy.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #79177 08-22-2008 02:14 PM
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My whiskers never came back below my chin which is about the only positive thing that came out of the radiation. The whiskers above my chin first came back darker and heavier then settled back to pre Tx normal.


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.
davidcpa #79212 08-22-2008 09:53 PM
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Don-

Another week down...how are you doing? Hanging in there???


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


davidcpa #79242 08-23-2008 03:51 PM
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[quote=davidcpa]My whiskers never came back below my chin which is about the only positive thing that came out of the radiation. The whiskers above my chin first came back darker and heavier then settled back to pre Tx normal. [/quote]

In my case, I had a beard for over 30 years (For two reasons; primarily I am too lazy to shave every day and secondarily for the amount of money I saved on shaving supplies over three decades) -- I still have my goatee and mustache, but the rest has gone.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #79246 08-23-2008 05:25 PM
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DonB Offline OP
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Pete,
The only significant beard areas I have left now are also goatee and mustache.

I am OK with that, but I really dislike the bald spot on the back of neck. Maybe I can let the higher hair grow longer to help cover it.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #79247 08-23-2008 05:33 PM
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The bald spot will likely fill in this is just the exit radiation.
Give it some time (couple of months).

At this point my sideburns have filled in again (a la Elvis). It is just fortunate that because of the radiation field they are at least symmetric. Everything else with exception of one spot is (still?) dead. The exception is a small patch right under my nose. Not the type of mustache I want!.

M




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
DonB #79248 08-23-2008 06:12 PM
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DonB Offline OP
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Stephanie,
I guess I am doing pretty good.
My MO said last week he very rarely has a patient do so well this far along.

Just seven more zaps left now, but as you know the bottom can fall out in that last week.

I developed laryngitis and coughing spells but I don't have much of a sore throat and my mouth is relatively fine (no sores). Although I doubt I could eat solid food; I am not needing to use any of the pain meds yet.

Saliva seem to come and go; not much mucous yet. I really hope the saliva doesn't get worse and dry up; as-is is pretty decent.

I stopped going out to public places because I don't want to catch anything.

Interestingly I was invited to a dinner party last night. They knew I couldn't eat, but figured I might like the company --- I declined frown Guess now I can't complain to anyone anymore about having "cabin fever".

I am feeling more tired, but not sleeping any more than I normally would, just dragging around the house, pestering the cat, watching TV and reading.

I am still holding all the extra weight I put on and I have never been this heavy in my whole life!


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #79250 08-23-2008 06:37 PM
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DonB,

Sounds like things are going pretty good for you. So glad to hear and hope it will continue. Only one week to go.. Wow I am sure you can hardly wait.!! grin

If you are having any problems with dry mounth try the Oral Balance from Biotene. It really helps.

Take care.. Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
DM32ASA #79251 08-23-2008 06:41 PM
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Don,

It sounds like you're doing really well. Are you still able to swallow? And are you stretching your jaw? I've found that the skin around my mouth is super tight, making jaw stretches difficult, but I'm doing my best to stay mobile.

Keep up the good work smile

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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