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Joined: Mar 2014
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Well said and thank you for you kind words, support and patronage wink. I intend to retread these words in a few years and laugh like a hyena because I'm still here to do it heh heh.

The Hellion


SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
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I also don't comment all too often, but feel the need to say that I really admire your compete level - your sheer desire to get past this & your positive outlook. Really hoping to see some improvement for you.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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Posts: 756
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Hi Hellion,

I also read all your posts and appreciate the updates. Don't have any advice other than to keep fighting! Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Mar 2014
Posts: 110
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Joined: Mar 2014
Posts: 110
Another update,

Received the second infusion of the two medicines last Friday and so far, so good. There are some potentially dangerous side-effects but up to this point I have escaped them (touch wood). The biggest fear is debilitating, dehydrating diarrhea which can hit up to about 50% of patients. Nice to be on the right side of a coin flip for a change smile.

I did have a terrible couple of weeks of nausea, perhaps due to radiation, perhaps due to the treatment - no one is really sure. I was unable to eat or hold down anything for about half of the last two weeks. Fortunately, through much experimentation, they seem to have hit on a good combination that is working.

I will warn you all, however, that the fatigue associated with this treatment, at least for me, is pretty staggering. I need a nap after doing almost anything and I think I could pretty easily sleep/doze/zone for about 20 hours every day. They are working on that, as well.

Additionally, although this may be unique to me, there has been associated a terrible loss of appetite - it is hard to motivate myself to eat - it's like a job.

So....

There is the update. Things are otherwise fine. We get a scan in four weeks and that will be our first of two markers - if I do not show response by the second one, I'm off of the trial so let's all please keep our fingers crossed for me unless you really don't like me in which case I would ask that you not actively root against me smile.

I hope everyone else is faring well, or at least as well as can be hoped.

Good luck to us all - remember - we must keep fighting if ever we can. I have had days where I forget that, so sick am I, but I have such a great friend to always remind me - yeah, you guessed - my wonderful wife. No matter how low I get, she manages to find just a bit more energy and encouragement to feed back into the system.

Cheers, all!

The Hellion

Last edited by TheHellion; 02-15-2016 05:55 AM.

SCC Base of Tongue
Diagnosed 3/5/2014 T2N2C
PEG Installed 3/19/2014
Chemo/Rad 3/27/2014
1x Cisplatin, 4+ TaxoCarboplat + 33 * 70 gy
Chemo FINISHED 5/5/2014
Rads FINISHED
PEG tube removed 10/08/14
Back to work 4 Aug full time
1/19/15 - diagnosed mets to lungs
7/17/15 began Pembrolizumab clinical trial demitted October 2015
1/14/16 began Tremi-MEDI trial
-This far, no further! On ne passe pas!

**update** passed away 3/26/16 RIP, you will be missed by many
Joined: Jun 2007
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Thank you for continuing to keep us updated. Your posts will help many others in similar situations.

You have hundreds of friends here cheering you on. Many, many read your thread and dont comment.

Wishing you all the very best with everything.


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: Jul 2011
Posts: 945
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Posts: 945
Glad to hear from you, Hellion - and hoping for good results with the scan. Since the treatment is tiring you out, we'll assume that its REALLY knocking the cancer on its butt.
All the best,
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: Apr 2015
Posts: 91
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Posts: 91
Have been reading your posts. I hope all goes well for you. I am pulling for you! Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Aug 2011
Posts: 596
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Joined: Aug 2011
Posts: 596
Dear Hellion,
You are an example of true strength and courage. Your tenacity is admirable. As Maria said, perhaps your profound fatigue is a good sign. May your appetite and vigour return soon. Thank you for keeping us posted and being a trailblazer in this new process fighting cancer. May the force be with you!

Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
Hello Hellion,
I always read your posts. You too , are forging the way of the future for those that must follow.
I am standing firmly in your corner, rooting for you. All my fingers and toes crossed for a very positive outcome. You and your wonderful Wife have my admiration.
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!
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hi Hellion,

Glad to know you are not suffering from diarrhea, not so much because of the diarrhea itself but the attendant problem of dehydration. As for the lack of appetite, have you tried watching cooking shows to help make your "job" easier?

Hang in there, dear friend. I am rooting for you. Much credit to both you and your lovely wife.


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.
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