| | 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 | If you want to seek out one of the top CCCs I know that md anderson in Texas is amazing. What Christine said was true. Incurable is terminal. Sadly mets to to the lungs is almost always fatal. There are a few people here undergoing treatment for lung cancers r/t oral cancer - check the recurrence section for their stories. I would ask about clinical trials and push for a second opinion. Miracles do happen - and I would be hoping for one for your sister. She's so young. Sometimes your do everything right from a treatment standpoint but the cancer is so aggressively hard to catch. Her tumor was very large. The biopsy of her lungs is to determine if it is mets or if it's a different cancer. There is actually a higher rate of survival if it's actual lung cancer and not oral SCC that's moved. Hey are also doing some kind of a response therapy in California (biopsy samples can be sent there to see what chemo her cancer responds best to. I would ask about this. Sometimes all you need to do is buy some time and maybe a better treatment will come along. Hugs to you and your family.
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Rebecca,
I've been "incurable" since I was first diagnosed in August, 09. I'm somewhat less fit than I was then due to the depredations of the various treatments over the last 5 years, but although I am stage IVc and have been since Feb, '11, I anticipate that I'll be around more than the two years I should have statistically.
Stage IVc has a 5-year survival rate of Zero and I've been there for three years now. If that makes me "terminal," so be it. But the rumors of my death are greatly exaggerated if I do say so myself
I just finished another three weeks of beam-radiation on Mon, March 24th and I was in the gym yesterday. (I'd been out since 11/24, due to radiation sickness.) I do my best to lead the same life as I did before cancer. No one gets out of here alive, but the pity is that some people focus on fear and never are "alive." Don't be one of those, and don't let your sister be one either.
Best of luck to you both!
Bart
There are many ways to extend life of a "terminal" cancer patient for those willing to undertake then
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - 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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]...but the pity is that some people focus on fear and never are "alive." Don't be one of those, and don't let your sister be one either.[/quote]
Bart, you are SO right on. I make sure everyday is great, even if it is just the smell of the air or even the rain on the ground. No regrets, no what ifs, no woulda coulda shouda nonsense. No hate, no fear, no anxiety. Only grateful to have today on earth and try to do good things.
Having said that, the greatest fear I have is not following what I just said above and THE day comes and I have to admit I was not fully living that day.
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: Mar 2014 Posts: 1 Member | | Member
Joined: Mar 2014 Posts: 1 | Is the immunotherapy trial related to PD-L1? How is it working?
Caregiver to Tushar: 11/11 maxillatomy, 12/11 radiation, 5/12 mets to lymph nodes, 7/12 IPT/carboplatin, 10/12 radical neck dissection, 12/12 two new tumors, 2/13 cetuximab trial, 6/13 PD-L1 trial, 8/13 heaven
| | | | | 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 | Baku, my husband is receiving immunotherapy and it is related PD-L1. I have posted all the information I am aware of under the "Recurrence" thread with the heading "Immunotherapy." John has been receiving the trial drug for close to four months now. He will be going in for his eighth infusion which will be followed by a CT scan later in the week and a review meeting with the MO. The trial drug has close to no side effects so far, but it does work slowly.
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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