| | Joined: Oct 2013 Posts: 24 Member | OP  Member
Joined: Oct 2013 Posts: 24 | Just got home from an ER visit. My sister has been having chest pain/upper back pain. Due to her cancer history, they did a CtScan. It showed 13 tumors between her lungs. We feel like we've been hit by a Mack truck. She was doing so well, or so we thought. Please lift her up in prayer. We need it now more than ever.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Rebecca - So sorry to hear about your sister. I'm sure she will be in lots of thoughts and prayers. Keep us informed.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im so very sorry to hear about your sister.
Keeping her in my thoughts and prayers.
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: 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 | I'm so sorry... Hugs and prayers to you. Are they trying any clinical trials on her?
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2013 Posts: 104 | I'm so sorry to hear this news... My thoughts are with you both.
Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
| | | | | 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 | So sorry to hear that. My husband has mets in his lungs too. It was devastating when we heard the news, but he has remained stable since we found out about the mets last August. He is still doing his normal daily activities and goes for walks. He started a clinical trial at the end of January. I take it a day at a time and I make every day we have count. Keeping you in my thoughts.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | I'm so sorry that your sister and family are facing this devastating news. She's already been through so much, and so very young. My heart goes out to all of you. I pray that you find comfort and hope in the days to come.
(((HUGS)))
Lynn
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Rebecca , I am so sorry to read this news.
I hope her team has come up with some options for treatment . Perhaps you can ask about Trials that are available.
Keeping you all in my thoughts.
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 2013 Posts: 24 Member | | OP Member
Joined: Oct 2013 Posts: 24 | We met with an oncologist Friday afternoon. She came right out and told us that this cancer was incurable. There are a couple large tumors in her left lung and several small ones in her right lung. She is scheduled for a pet scan, mri, and lung biopsy next week. Also, they are planning to begin chemo on Friday of next week. My mind went blank while we were there and given the opportunity to ask questions. But now I wonder is incurable the same as terminal? Do people survive with lung cancer? Should we seek a second opinion? She has been receiving care at a CCC, but we are only hours away from Atlanta's Cancer Treatment Center of America. Any advice, any at all is most welcome. If you know of any body that's had a similar diagnosis, please share their story. Thanks for all your help.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | I was afraid you would get that diagnosis. Yes, incurable is another term for terminal. However... chemo can be used to extend her life. But the time will come when you will need to weigh quality of life over quantity. I would definitely seek out a second opinion right away. Of course its your choice but I feel CTCoA is not a good option. CTCoA honestly does not have the best reputation, it isnt a CCC even if it leads people to believe it is. I would doubt they would be of help, they patient shop so their numbers appear to be better than other centers. Here is a list of top US hospitals. TOP US HOSPITALS 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: 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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