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#100661 08-02-2009 11:22 AM
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Greetings my dear dear friends. I have been away for far too long, wallowing in self pity, depression and pain.

Once again, on the 14th, I shall go under the surgeons knife. This time for the removal of my right mandible. The 136 cGys of radiation have taken their toll and the radiation necrosis has claimed this bone. The pain has grown to unbearable heights and it is time to do something about it. Attempts at debridement having failed, only causing more pain, it is time to remove it. Hopefully this will solve the pain problem.

I miss you all so much. I will try my best to get back as often as possible from now on. Helen, I will start planning another gala for the Island, I promise.


No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac

Thank you for leaving your mark.
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Hey
good luck and welcome back
liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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Florida Bill,

Thank you for checking in...I have wondered and worried about you over past two years after I read your blog and then we heard nothing...I kept trying to be positive but saw your posts the other day and was so glad that you are still kicking. I am so sorry that the mandible issue has become so overwhelming and the upcoming surgery now seems inevitable. Just wanted you to know that someone was thinking about you and wishing that things were OK...

Florida Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Bill, it's good to hear from you again, but certainly not good why we are hearing from you. Hang in there because you are a tuff cookie!


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.
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Fl Bill,

Sorry to hear about all the new stuff. Please hang in there and post here more often as we are all family and we need to stay in touch.

Fl David


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.
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Yep and a family likes to know how each of the kids are doing. Good luck and the best to you.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Bill,
I'm glad to see you back but really sorry that you have to undergo this surgery. Hopefully it will fix everything and you will no longer be in pain. I too have thought of you often and wondered what you were doing. We are here for you. Keep us posted.

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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Bill, sorry to hear of the big surgery coming up. Hope it fixes your problems for good. Im facing a similar surgery this month too, not sure if mine is the bottom or also the top and how much. Soon I will know more details. Do you know how long of a rehabilitation yor docs are expecting? What is going to be used to reconstruct your jaw, bone or metal?

Sorry for the questions, just trying to compare our procedures.

Best of luck with everything going on. Hope your recovery is an easy one.


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
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Bill

Sorry to hear that you are having to deal with the ongoing horrid issues of this disease.

I have had nearly all of my mandible replaced with bone from my hip due to ORN so I can certainly understand your feelings and fears heading into the surgery.

Wishing you all the best

Karen



46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Bill....sorry you are facing more surgery....hope it will lead to more comfort and true good health for you. Know that you will be in my prayers.

--Colleen


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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So sorry to hear of this situation for you.. All we can do is try our best. Will pray and hope all will go well for you.

I know how it is when things keep poping up and can get you down. So do not feel bad about that. Keep fighting!!

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
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Bill
Best of luck with your surgery tomorrow. Please post an update when you can. Sending good thoughts and prayers your way smile


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
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