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#182988 06-30-2014 03:27 PM
Joined: Jun 2014
Posts: 1
mark66 Offline OP
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Joined: Jun 2014
Posts: 1
Hi all,
My name is Mark and I live in OKC. I was recently diagnosed with cancer in my left vocal cord, My ENT said we caught it early but I'm starting radiation this Wed. 5 days x 6 weeks. Very apprehensive about side effects and would appreciate any information.
Prayers to all of you who post here and given your time to help newbies like me understand what we are going to be going through.


Mark

mark66 #183009 07-01-2014 02:22 AM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi Mark, sorry you have had to join us. I am caregiver to my Husband Kris, so haven't actually been through this myself. I will say it is a rough ride, but doable.
I'm sure Christine and others will be along soon to give you advice. In the meantime read as many posts as you can on here. I found them invaluable when we went through this journey.
You will get through this.
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!
mark66 #183018 07-01-2014 10:58 AM
Joined: Apr 2013
Posts: 319
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Posts: 319
Hi Mark,

This may not be welcome news, but the first bit of advice I would give is to go with the standard recommendation, Chemotherapy-assisted Radiation. It's a brutal treatment, but it IS the best weapon you have in your arsenal to kill this disease, and you want to knock it out on the first attempt or you are very likely to have recurrences. I've been fighting this killer for almost 5 years almost continuously (I've usually had a 3 month break between recurrences). I'm stage IVc and that little "c" is not just bad news, it's the worst.

While you undergo any of these treatments, please forget entirely the word "side effects" when considering one course over another (if you are offered a choice) and substitute in it's place "survival"

One can lose the use or function of nearly any body part (Vital organs excepted) and still adapt to live a long and fulfilling life.

I got shot 4 times in late 1967, two in the gut (I have both today, one that cut my iliac artery, that one is the the back of L3; the other is in the pelvic cavity. The two of them plowed through my guts pretty and got my liver and spleen at the same time.)

One passed harmlessly through my thigh, while the other went dead center through my sciatic nerve, permanently taking every thing below my right leg off the neural net. Learning to walk from scratch is more difficult than it sounds, but I did so and was back in Vietnam and on the job less than 3 months from the event.

Attitude is everything. Assess what you have left, and adapt it to overcome whatever shortcoming resulted from the event. In over 45 years, very, very few people I've worked with were ever aware that I had a "rock in my shoe."

You can't do that if you don't survive in the first place, and this disease is a killer, make no mistake about it.

Another thing to keep in mind is the your reality, your "normal" ceased to exist the moment you got that terrible diagnosis. Your reality now is that you have a disease that is a killer; and you want to do everything in your power to kill it first!

With all that said, I wish you only the very best in both your decision and your outcome.

Very sincerely,

Bart


Last edited by Bart; 07-01-2014 11:00 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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