| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yup... it could be numerous things. It should of course be given its due diligence, but its not cancer until the biopsy says it is. hugs.
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
| | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Well we met with the RO and the spot was definitely not there the last time so things look poor. We have a meeting with the chemo oncologist today but I think that may be less important than it was. We'll see what the CT scan says but at this point my RO feels like we're in the palliative care mode. We are going to get our diagnostic CT on the 26th and get second opinions, but at this point it looks like we're kind of screwed. QOL is so important to us -- that said, I'm very likely willing to give the curative path a shot if they're willing to shoot.
Another day of tears, another day of imagining leaving my beautiful, wonderful, amazing wife and it hurts. Fingers crossed that the CT shows something positive or at least curative, but with Wednesday's consult, a door closed -- there are a few windows left open in the room, though, and maybe we can slip out of one of those before this thing notices we've even moved haha.
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
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | See I have issues with drs who immediately jump into palliative mode without a firm dx... That whole thing completely effects a person's mindset and overall health. You don't know its cancer, and either do they. Secondly if it is, there are trials you can try. Thirdly - I know someone who had SCC - got though it still smokes, has had a few spots on her lungs and is still going strong - they couldn't confirm or deny it was cancer but she is at this point in good health two years out. ? See the onco I dr.
And good luck.. Hugs!
Last edited by Cheryld; 12-05-2014 07:18 AM.
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
| | | | Joined: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Thank you Cheryl. I'm with you, believe me. I'm clinging to my 1% (or whatever) chance and I'm going to look for every out on this, believe me. I haven't and won't quit fighting -- I just can't see leaving my wife and kids yet. It may not look good, but I don't want to accept failure. Who knows what may happen -- I know it ain't good, I reckon it's probably worst case, but I appreciate your optimism because optimism is a wonderful thing!
Another lyric I live my life by (for better or for worse) -- "Spit In your eye, I will defy -- you'll be afraid when I call out your name. I'm not a number, I'm a free man, and my blood is my own, now. Don't care where the past was, I know where I'm going." - Iron Maiden. Who says 80s metal has nothing to say?
I'm doing my very best to believe that they don't know anything and as such I get to ride on and on and on and on and on.
I should note (hence the edit) in fairness that the RO hasn't made the call and is hopeful that we can get more information. I pressed him for scenarios and odds and he was honest and forthcoming. This is just an indication of the direction the conversation went -- I just seem to like to know scenarios and odds. I'm reporting these things out because I like to shout about things I don't like and you guys are the people that understand the things I am shouting about.
I know too many people here have suffered and lost and you guys, then, know why I cry, why I'm so sad and why the very idea hurts way more than the radiation and chemo ever would. Like I said, though, thanks for the encouragement -- the one thing I know is, whatever the odds, none of us know for certain what will happen until they know more for certain. I'm still hoping!
Thank you!
The Hellion
Last edited by TheHellion; 12-05-2014 09:19 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 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im not one for focusing on the odds either. Every single patient is an individual with different variables. If I went by the odds, I wouldnt be here right now. Never count yourself out even when it looks like the odds are stacked against you!
Best wishes!!! ChristineSCC 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 | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I'm no doctor of course but the terms "curative" and palliative" do not define outcomes but treatment options. Prognosis is just statistics and not a predictor of any given outcome.
Palliative treatments manage the cancer and when able to keep it under control one can experience pretty good QOL and longevity.
We have folks here today who are living examples of survivors managing through recurrence and palliative treatments.
Lastly, as mentioned, put on the research cap and see what other options may be available to you. Trials and other less medically vetted options become more acceptable when traditional treatments are no longer options.
Stay positive! I always used to see some statistic and say who says I'm not in that group, nobody knows either way so believe!
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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | If you ask an oncologist, you will probably get the answer that Don gave above. I had such a conversation with our MO and she said the chemo John is receiving is palliative, so was the trial medication he was on. Where I stand, it does not matter what the word is, palliative or curative, if the medication manages the cancer and slows it down, then I will take it.
Whether John is sick or not, with every passing day, we will have one day less together. This gives me the impetus to live every single day well and with no regret.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hellion, I haven't weighed in because, frankly, it sucks to hear the news. I, too, think of your family and can't imagine what you are experiencing. AI even shed a few tears for you.
There is nothing in life I know that has been worse than seeing doctors that stop looking you in the eye to tell you how sorry they are. I stopped counting in double digits about 4 years ago.
If there's anything I can do, let me know. If you want to get a second opinion around here or Houston, I would be glad to help make that happen.
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: Mar 2014 Posts: 110 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Mar 2014 Posts: 110 | Thank you guys. I know you lot have had a harder time than I, so I appreciate so much your experience and encouragement.
I'll keep you posted when I know more. For now, we watch, we wait, we plan and we hope. Boxing Day is suddenly something I am both anxious for and terrified of, just a bit.
Thank you all!!
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
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Oncologists likely look at numbers and statistics because they know that some people don't make it and some do and they don't always know why. I know that my husband defied statistics. His MO shared with him recently that she really thought he might not make it given the size of his tumor. I agree with Christine about statistics and I agree with many others who have talked about ways to cope with uncertainty and waiting and trying to live in the moments that we have right in front of us. I know how difficult this is, and was, for me and I hope that you can find a way to do this. But it does suck and I know I vacillated between hope and despair. I'm so glad you have a place to go where people understand what you are going through.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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