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#169267 08-14-2013 11:01 AM
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gmcraft Offline OP
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In late June, John was experiencing chest pains and his GP sent him for a chest x-ray. That was followed by a phone call from the GP that he was sending the x-ray onto our RO as he felt the results warranted further investigation. John had a CAT scan at the end of July and today we were given the results -- the cancer has metastasized and is now showing up in the lungs. The RO believes that the cancer has spread to the rest of the body -- it is only more easy to see when it is in the lungs. We are now waiting for an appointment with the MO, but the RO made it very plain -- any medical treatment is to maintain the quality of life for as long as they can, and not the quantity of life.

I was hoping that I would never have to write this post but I guess the choice was never mine.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
gmcraft #169269 08-14-2013 12:45 PM
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Gloria, Im very sorry to read your update. Wishing you both all the very best with everything you are facing.


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
gmcraft #169271 08-14-2013 01:31 PM
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Gloria,

I am so sorry to hear about the recurrence and outlook. Keep seeking other opinions as you know there are always different perspectives and options.

Best to you, don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
gmcraft #169272 08-14-2013 03:18 PM
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Gloria, I am very saddened to read your post. Terrible news. Not what we ever want to hear and I can imagine how devastated you both are feeling.
Get another opinion, chase options. One day at a time.
Keeping you both in my thoughts and prayers,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
gmcraft #169275 08-14-2013 03:50 PM
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Crap....I am so sorry. Please know you will be in our prayers. As you know, this is everyone's worst nightmare. I cannot even imagine what you are going through, but we are here for you from afar.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
gmcraft #169278 08-14-2013 04:31 PM
Joined: Apr 2013
Posts: 92
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I am so sorry, I say that totally heartfelt with tears in my eyes and a lump in my throat. Its a nightmare most of us probably share and I am so sorry it is your reality.


AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
gmcraft #169280 08-14-2013 07:03 PM
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That stinks, So sorry!


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
gmcraft #169281 08-14-2013 07:22 PM
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Damn! Sorry to hear this.

Positive thoughts and prayers.

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
gmcraft #169299 08-15-2013 05:18 AM
Joined: Jan 2013
Posts: 80
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Posts: 80
Gloria (and John),

I am so very sorry to hear this and can understand the fear, sadness and disappointment that you must have. I will double my prayers for you that hope and treatment will give you options and faith to get through this journey.


Please keep us updated as I fear the same with me as my recent CT has indicated a very small spot on my lung that is being watched (too small to biopsy at this time.)

All my best,
Nancy


Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
gmcraft #169300 08-15-2013 05:21 AM
Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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I'm sorry to hear. As mentioned, seek out the best possible treatment. I heard of resection using VAT's for metasteses, and targeted therapies. Take care.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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