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1 yr update #198847
08-10-2019 06:19 AM
08-10-2019 06:19 AM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 268
I did not go to a day's worth of appts with husband. He saw all the doctors, had a CT scan. It was 1 yr ago this week that a feeding tube was inserted which was the worst part of it all according to him as it never fit correctly and he had a lot of pride to stumble over before he would use it. He lost 60 lbs in 2 months from starvation and after some hospitalization.

Haven't heard about CT scan results but he was put on another form of antibiotic for a sinus infection he can't shake. they sent in a sample to determine what bacteria (?) he is dealing with.

He doesn't see the radiation oncologist for 6 months so he has graduated from the 3 month visits to 6 months at least for 1 doctor out of the 3.

You would never know he had cancer. He can eat anything he wants and no more burning. His voice is normal. He still eats a horrible diet of fast food and frozen processed stuff like before frown , working full time, still a bit tired but he works a desk job 40 hours a week and has a mowing business, I'd be tired too.

We seem to be surrounded by people with cancer lately. Just lost a friend to pancreatic cancer. Met her 30 yrs ago this week at my first date with husband. Daughter in law has a dad (liver and kidney cancer) and a brother (prostrate cancer but doing ok now). My daughter's father in law had prostrate cancer. Walking thru it gives one a new appreciation of the cancer journey as others walk thru it.

just a little update for those who have carried me along this difficult journey the past year.

Last edited by ConnieT; 08-10-2019 06:20 AM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: 1 yr update [Re: ConnieT] #198848
08-10-2019 08:20 AM
08-10-2019 08:20 AM
Joined: Oct 2012
Posts: 1,157
Toronto, Canada
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gmcraft Online
Assistant Admin
gmcraft  Online
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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,157
Toronto, Canada
That’s good news, Connie. I can’t believe it was a year ago that you first came onto the forum. Time really flew!


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.
Re: 1 yr update [Re: ConnieT] #198849
08-10-2019 09:16 AM
08-10-2019 09:16 AM
Joined: Jul 2012
Posts: 3,255
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,255
NYC
Congratulations to you and your husband completing one year. It was a lot of ups and downs during that time, but you pushed him though to complete treatment, which is most important! Hopefully he will see other positive effects of a healthy lifestyle.

I’m surprised the Radiation oncologist pdropped his visitation! Mine were the same for all doctors they see you til 5 years. Each year they have a certain time they want to see you. And. Of course, you can see them anytime for anything unusual or suspect!

Good luck with everything!


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






Re: 1 yr update [Re: ConnieT] #198852
08-11-2019 08:29 AM
08-11-2019 08:29 AM
Joined: Jun 2019
Posts: 47
San Antonio, Texas
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Mokie Offline
Contributing Member (25+ posts)
Mokie  Offline
Contributing Member (25+ posts)
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Joined: Jun 2019
Posts: 47
San Antonio, Texas
Does my heart good to hear he’s so active after overcoming so much. Was not a member of the forum at that time to have followed his pathway, but he and your both sound amazing. I have the greatest respect for anyone who has gone through OC treatment. Hooray for you both.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Re: 1 yr update [Re: ConnieT] #198858
08-12-2019 05:18 AM
08-12-2019 05:18 AM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,409
PA
Hi Connie!!!

Its been a year already??? I cant believe its been that long so quickly, where did the time go?

CONGRATS!!!!!

You have been a great caregiver!!! You sure had your work cut out for you with your "stubborn" patient who marched to the beat of a different drummer. His bad diet and habit of not following doctors orders really made caregiving a challenge. Factoring in his huge weight loss makes your husbands speedy recovery amazing! I cant imagine how things would have gone without you there trying to keep him on track.

Im hoping you are able to get back to your usual routines now that your husband has recovered. Best wishes with everything!!! 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
Re: 1 yr update [Re: ChristineB] #198862
08-12-2019 11:00 AM
08-12-2019 11:00 AM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 268
thanks everyone.

I suppose i worry a little too much about recurrence as he seems a bit arrogant about it all now. Time will tell.

I've so appreciated all the info, experience and encouragement. I will continue to check in and read other's stories as many of you feel like old friends.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.

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