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Joined: Mar 2014
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Hello,
I was diagnosed with cancer in and around my left tonsil. I went through chemo and radiation in 2003/2004. I've been in remission for more than 10 years now. Unfortunately, the radiation did severe damage to the left side of my head and neck, including my cervical spine, left lower brain and jaw. I went through several jaw surgeries to try to fix the problem. All were unsuccessful and the last one took away my ability to swallow. I've had a feeding tube (PEG tube) since 2008 and I've been completely reliant on it since April 2009. I'm looking forward to talking to other tubefed folks and helping anyone who feels overwhelmed by the prospect of eating blended meals through their tubes!


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
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Posts: 319
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Posts: 319
Welcome to the family, Brian, and thanks for the generous offer. You sir, are one fine compassionate human being and it's nice to have you among us!

Bart


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Mar 2014
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Thanks, Bart. For some reason you remind me of a tough-as-nails MSgt I worked with many years ago at Hurlburt Field--also named Bart. You're not related are you? :-)


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
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Posts: 9
Hello Brian.
I had my turn with the peg tube in 2012 during radiation for throat cancer and it was not fun. I'm now dealing with some new cancer issues and, in fact, may be doing jaw surgery(ONJ) this Wednesday. Is long story. Too long. I just want to welcome you and say thank you for the offer of help.

Joined: Mar 2014
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Thanks malwicker,
The PEG tube was difficult to adjust to, but I've grown accustomed to it. I've gotten to where I bring my blender out to restaurants and ask them to blend up my order and bring it out to me so I can eat my meal with my family. I also try to come up with the most odoriferous blends, such as the sardine/brussels sprout/orange blend I had a couple months ago. Have to meet it with the right attitude. I'm a tubie for life. :-)


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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"OCF Canuck"
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Brian welcome - and you might as well have fun with it.. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 22
Thanks for the welcome, Cheryl!


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
Joined: Oct 2013
Posts: 559
Likes: 1
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Hello Brian - I'm not on a PEG but do share Hurlburt Field memories and a friendship with Bart with you.

Bart gets most of the credit for getting my mind in the right place for this journey down Cancer Avenue.

If memory serves Hurlburt was one of the auxiliary fields of the Eglin AFB complex where I did my summer camp training prior to commissioning back in 1973. After that I went on to fly B-52's at Ellsworth until 1981.

What did you do at Hurlburt?

Welcome to the forum.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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I don't think it's the same Bart I knew at Hurlburt, Tony, that would be too wild of a coincidence. :-)

I was an intel officer there--not a terribly good one I might add--from '99 to '02. Do you still fly?

Thanks for the welcome.


Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html
11/03 - started CHOP chemo
12/03 - remission
1/04 - finished chemo
4/04 - started 25 rads to make sure they got all the cancer
5/04 - stopped rads after 20 due to severe reaction to radiation
5/05 - began seeing damaging effects of radiation
7/08 - PEG
4/09 - 5th unsuccessful jaw surgery

Smile!! Laughter is the best medicine!
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
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Joined: Apr 2013
Posts: 319
Hi Brian (and Tony),

Brian, the answer to your first question is "yes, we are related."

Just not real closely...

Alas, my branch and period of service made assignment to Hurlburt an impossibility for me. I was Army, 1957-1967 and the Special Operations community that we know today was just a gleam in it's collective daddy's eye in those days. I was a cannon-cocker and served in an Airborne 105mm Howitzer Battalion (in Wiesbaden, no less) in Germany, '63-'65.

BTW, in anticipation of the question ending with "...perfectly good airplane?"
look in the dictionary under "Oxymoron."

It says "See perfectly good airplane."

VBG (very big grin)

Bart

PS. Good Luck with your surgery tomorrow, Malwicker! B.

Last edited by Bart; 03-25-2014 08:23 AM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
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