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Joined: Nov 2009
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We all have ways that we can learn from each other, and ways that we can inform, as well.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
Joined: Jun 2013
Posts: 49
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Joined: Jun 2013
Posts: 49
I agree with the most recent posts. Your presence is invaluable here, Paul. I have not been on the forum long, but I have been encouraged and have learned a lot from your posts.
Please reconsider. Your sharing of your OC journey, is making a difference in those who are just starting out.
Thank you.
Barbara, hanging tough caregiver & wife to Richard, the love of my life!


65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
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Patient Advocate (old timer, 2000 posts)
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Paul, it saddens me to hear this from you. I know there are some that have gone through more than others but the powerful story you share gives each of us not only hope but determination that no matter how tough the journey has been, people like you and Charm dug deep and made it as far as you could...and then some. I stay away because I don't want to discourage others. My case is so rare, although much more prevalent than what I originally believed or was told. I honestly don't know if I could have fought this hard to stay alive as I did if it wasn't for you. Yes, I struggle with every breath and about every swallow these days, am on a ventilator type machine to make it through the night since my body no longer breathes automatically but, again, I would not be here had I not known about your story as well as Charm's. You truly inspired me to get up and live, regardless of what the medical community told me or believed. They said I wouldn't make it to October yet I rode 35 miles in the bike Friday and am entered in a 100 mile endurance race next month! You were an integral part of me being able to do this.

I don't get involved in the "prove it" discussions like you do. I could not take that on a regular basis as you do. I don't really care who believes me or not since I know what I read and I know what I did and I am here to prove it. My proof is me although I developed my own personal plan after conventional medicine tossed me out with the bath water. I read textbooks, studies, trials, etc., pertaining to cellular biology, hematology, radiation damage, nerves, motor neuron diseases, neuropathways, vascular disorders, digestive disorders, cachexia and a few other topics because I was told to lie down and die almost a year ago. I have a room full of stuff but at the end of the day, I eat lunch with high level oncologists and metabolic disorder specialists because I understand and talk their lingo. I did to help me but also to help them and spark an interest to study how to pull people out before they die. It is unacceptable that as many as 40% of the people that die during cancer treatment succumb to the treatment and not the disease. I will go kicking and screaming until someone listens. I am a lot like you. I have learned a lot from you always. It is very difficult for me to even type because of losing fine motor skills in my hands now and I can only imagine what it must be for you to type all you do at night...in the dark!

Never think your opinion is not valuable. I want to reiterate...I would not be here today if it weren't for you my brother from another mother. Your depth and breadth of knowledge on just about any topic totally blows me away!

You can clearly see that very few of my posts are even replied to except to tell me I did something wrong or don't know something. I could care less to be honest. I don't care if I win a popularity contest but pity the fool who disregards the message because of the messenger.

Ed

Last edited by Uptown; 07-14-2013 05:11 PM.

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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I'm back! I never really left. I was going to post the other day, but was busy with a few doctor appointments, blood test. All your comments brought a tear to my eye, not many rears lol, I have to keep strong, at least fake it. I want to appologize to Brian Hill, and anyone else I offended, and hijacking the post. No one insulted me, things have been rough more than usual, and my meds (diabetes) were off, BP, and needed to adjustment them, which is no excuse, and I should keep better contol of them for many reasons. Another is I can't say my next PET/CT is not worrysome. It's a major leap if clear, and a big set back, if not, and think about treatment options, which are very limited now, if at all, but will deal with it when I get there, It would be the first time in almost 4 years to have a clear scan after my 3 month post treatment scan, so was getting angry why this is so.


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






Joined: Oct 2012
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Joined: Oct 2012
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Dear Paul, we are all entitled to bad days, so, please, there is no need to apologize or explain your anger. It would indeed be too hard if on top of trying to cope with the disease, the harsh treatments, the plethora of side-effects that we also feel constrained when it comes to expressing o our anger, disappointment and frustration.

Those of us who have followed your posts diligently know what you have been through and personally, I have tremendous respect for you -- for your knowledge, insights and courage in the face of huge odds against you.

I have learned a lot of helpful facts from you but, more significantly, I see in you a role model, especially on days when things don't seem to go right and I am overwhelmed by grief.



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.
Joined: Feb 2013
Posts: 78
Supporting Member (50+ posts)
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Joined: Feb 2013
Posts: 78
I'm very glad you are sticking around. You add so much to this forum. And its good having another NYCer around. If you ever need anything that a fellow NYC resident could help with, let me know.


Andrew
age 25

early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+

2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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Posts: 945
Paul,
I am very glad to see you posting - and best wishes for your upcoming scan.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Jun 2007
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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)

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No apologies necessary, Paul. We are all in this together. Everybody has good and bad days. Glad to see you are sticking around.


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
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
Great to see you posting Paul.I knew I could rely on you to give me some information on my post re HBO. You are incredibly knowledgeable and I for one appreciate that.
You look after yourself and I too am praying for fantastic results in your upcoming scan. Don't borrow sorrow from tomorrow.
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!
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Patient Advocate (1000+ posts)
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Paul,
Did not see this thread until today. So sorry but totally understand the ups and downs of being a cancer survivor, particularly one with such a difficult history. Wish you the very best on the upcoming scan. Everyone has to deal with the anxiety that builds up in advance of the next scan. Take care, 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
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