| | 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 | Larry, good to hear you are going to MD Anderson. Drive carefully and keep us updated please.
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 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Keep in touch with your Drs. to make sure that they get you to MD Anderson ASAP. Call them every couple of days to keep them on track. Good luck in this WAR and hope all goes well. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Great - glad you are going to MD Anderson. Will be thinking of you both and praying for 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: 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 | Excellent progress Larry! Wishing you all the very best with your travels and appointments. Here are a couple resources to help you with your travels (sorry I forgot to post these before)... Free airfare for cancer patients List of free airfare companies
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: Nov 2014 Posts: 73 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 73 | Ok I am at MDAnderson. Saw Dr Blumenschien and now I have neck and chest
scans then see him again the see phase one Dr and possible 1 week of treatment.
He was very straight forward cancer in lungs is Head and Neck cancer, told me not curable. So I can do chemo if it works, possible immunology treatment but will depend on my Ulcerative Colitis biopsies. Going to start phase one.
Still learning what it all means. It seems I need to look for a way to buy time. I'm all for that. I have my best friend here so that's been a real boost.
Thanks for all your thoughts and prayers.
Larry
Oh Dr said I look good, everyone says that.
T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
| | | | | 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 | this sucks on the DX...
do whatever they offer you in terms of clinical trials.
eat healthfully
take supplements provided they don't interfere with whatever trial you are on.
Boost your immune system with protein...
hugs and prayers to you.
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: 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 | Hi Larry, You can be sure you are in good hands at MD Anderson. My husband has had both immunotherapy (phase 1 trial), chemo (taxol ad carboplatin, and now capecitabine), another clinical trial using a nuclear export inhibitor (phase 2 trial) and two rounds of radiation to deal with swollen paratrachial nodes. I know, all this sounds overwhelming, but his condition is stable and he does look well considering how many different treatments he has had. If you would like to read more about clinical trials and what each phase entails, here is the link https://www.nlm.nih.gov/services/ctphases.htmlHere is the link for more information about clinical trials https://www.nlm.nih.gov/services/faqctgov.htmlIf you want to read about immunotherapy, which seems to hold a lot of promise, you may want to read my posts here http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=183656&page=1Wishing you all the very best, please continue to update to let us know how you are doing.
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear Larry,
I've just read through your thread here and I'm so sorry that you've got this bad news.
However, I am so happy that your best friend is in Houston and so is MD Anderson!
You will be in my thoughts. Here's to living to the best of your ability. Live well, love unconditionally, and laugh until you're in tears!
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: Jan 2015 Posts: 10 Member | | Member
Joined: Jan 2015 Posts: 10 | Dear Larry,
I can't say much except that I'm praying for you! YOU WILL get through this!
Father had oral cancer stage 4A. Diagnosed 17th May. Partial glossectomy and graphing done from hand. Radiation 30x. Chemo - cisplatin 6 rounds. Finished chemo and radiation in Aug. PET - Nov - recurrence and spread to liver and lungs Chemo started - erbitrux and 5fu. 2 rounds done. Passed away 12/23/2014 - i believe he is in a much better place now | | | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 73 | Ok spent 6 months on Torisel and Avastin. Had pet in May nodules 10+ and grew some twice size.
Am trying to take a break until possible molecular treatment available.
Has anyone had experience with?
I was told 2 months or 18 months. But if I am having quality of life I should wait a couple of months.
So anyone know of anyone using successfully molecular therapy for h&n met lung decease?
Greatly appreciate input. Really want to stick around if I can.
Thanks Larry
T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
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