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dorety87 #125358 11-28-2010 08:56 AM
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Janice, I am sorry to hear about the latest news. Somehow you just knew this was a recurrance. Ive gone thru this myself. Not just once but twice Ive had recurrances. Its not easy to get thru this but it can be done. I feel that I am a very very fortunate person to have gotten thru OC 3 times. Its good that this has been caught early. Best wishes with your appointment.


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
ChristineB #125361 11-28-2010 10:05 AM
Joined: Nov 2010
Posts: 33
Contributing Member (25+ posts)
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Joined: Nov 2010
Posts: 33
Thank you Christine and yes, I knew.....in my heart of hearts, there was no doubt. I just feel so bad for him. He's scared. He's scared of the surgery, he's scared of dying. I just dont know what to do for him


CG of Mike, 43 y/o. July 2009 with Stage 4a SCC on Tonsil., Nov.2010 Recurrence on Tonsil and Base of Tongue
Surgery no clear margins. Very Invasive.Palliative chemo
7/2011: Cancer not responding to chemo, new tumor on larynx and a few other places in oropharynx
dorety87 #125376 11-28-2010 07:19 PM
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Janice,

Good luck tomorrow with your appointment.

I will be at FC this Thursday around 11:15. My leaving time varies from week to week and I don't know when I'm done until about an hour before.

I would assume that you will be quite busy this week, but if you and Mike would like to meet up after I'm finished, I could call you and hang around.

Otherwise, due to the holidays, I will probably not be there again until early January.

I'll send you an email with my cell phone number if you need to speak to me any time or whenever it can work to meet up. Also, reply with the best number to reach you at.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
Patcey1 #125427 11-29-2010 03:42 PM
Joined: Nov 2010
Posts: 33
Contributing Member (25+ posts)
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Joined: Nov 2010
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Hi Pat! I think I saw you today at Fox Chase. You were in the room right across from Mike and I when we were waiting for all of our surgery paperwork to be complete. He was laying on the couch in the room. I would have said hello but I didn't think the time was right. Mike was a bit upset at the news he just recv'd. Anyway, you look good!


CG of Mike, 43 y/o. July 2009 with Stage 4a SCC on Tonsil., Nov.2010 Recurrence on Tonsil and Base of Tongue
Surgery no clear margins. Very Invasive.Palliative chemo
7/2011: Cancer not responding to chemo, new tumor on larynx and a few other places in oropharynx
dorety87 #125429 11-29-2010 04:37 PM
Joined: Sep 2009
Posts: 63
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 63
Hi Janice,
Yes, that was me. I didn't realize you were in that room until my girlfriend mentioned it to me as we were leaving. I too thought it inappropriate to say anything because I was sure Mike had a lot to digest. This news is certainly not easy; so many of us live with the fear of recurrence daily. You are both in my thoughts and prayers for the best possible outcome under such dire circumstances. How soon does she want to do surgery and what has to be done?

Pat


Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
Patcey1 #125438 11-29-2010 05:43 PM
Joined: Nov 2010
Posts: 33
Contributing Member (25+ posts)
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Joined: Nov 2010
Posts: 33
MAybe one day we can meet under better circumstances.
Mike is having surgery on the 14th of December. He will have part of his jaw removed and replaced with a plate, he will have atleast 50% of the base of his tongue removed (maybe more once she gets in there), he will have a graft from his wrist to replace onto his tongue and some blood vessels removed from his neck (where he previously has his disection) and placed in his tongue. Feeding tube will be inserted on the 13th of December and will remain indefinitely, he'll have a trach until he leaves the hospital. We had to tell our kids today that the cancer is back and explain this surgery to an 11 year old and a 12 year old, UGH!!

His biopsy reads: Invasive poorly differentiated non-keratinizing squameous cell carcinoma.....This just sounds ugly


CG of Mike, 43 y/o. July 2009 with Stage 4a SCC on Tonsil., Nov.2010 Recurrence on Tonsil and Base of Tongue
Surgery no clear margins. Very Invasive.Palliative chemo
7/2011: Cancer not responding to chemo, new tumor on larynx and a few other places in oropharynx
dorety87 #125454 11-29-2010 08:22 PM
Joined: Sep 2009
Posts: 63
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Sep 2009
Posts: 63
Janice,
Sorry this all has to happen so close to Christmas, especially with the kids. My surgery was very similar, the jaw and the tongue although she did not need to take as much of my tongue as she originally thought. Do you know yet who the surgeon will be that is doing his jaw? Will they be using bone from his leg to fashion the jaw? You are in good hands with this team; try to stay optimistic..it helps a lot!!!
Dr. Lango was pleasantly surprised to hear I was eating. She never expected that I would be able to eat..just goes to show ya!!!!
Keep the faith!

Pat


Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
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