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Kerri Offline OP
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Hi, Brian.

Recently, I have seen ads for the new immunotherapy drug, Opdiva, as being one to prolong the lives of those with advanced stage SCC in the lungs.

Since you are right on top of these things, I was wondering if you have heard if it would potentially benefit certain patients with lungs mets or OC/OPC in general.

Just curious smile.

Best,
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: Nov 2014
Posts: 66
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Posts: 66
I am curious about this as well


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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If your lung cancer is a met from your oral/oropharyngeal cancer, the answer is yes you are a candidate. You need to have failed primary treatment with radiation and cisplatin to get into any on going trials. For the limited approval of the drug from FDA, you still need to have already had cisplatin. I watched this go through trials at the NCI oversight committee that I am on, and there are now 4 companies with variants of this idea in the market this was just the first. This got fast tracked from the FDA before the clinical trials were done because the results were so positive.

But not for everyone, and there are still many questions about the side effects and dosing levels to be answered in trials. So while immune checkpoint inhibitors (pd-1 pathway) are an amazing thing for turning your own immune system on, actually allowing it to see something that it was not recognizing as a threat before, there have been a few cases where the immune system attacked more than the tumor with a negative result to the patient.

This is an amazing breakthrough. My Xmas donation ask letter is partly written around this, this year that I will be sending out to thousands of OCF supporters in a week, as OCF was a financial funder along with the NCI and private sector in the idea. We also referred a bunch of patients into the trials. That portion of the patients that did respond have had long durable remissions. Remember that these were patients I was talking to had no hope, and the doctors had pretty much told them to go home and get their affairs in order.

People here on this board are probably the only ones who understand how this impacted me personally, as I talk to these kinds of patients every week, and it is one of the hardest parts of what I do for OCF. But today many of those patients are alive because of immune checkpoint inhibitors. It has completely changed the optimism that I can express to them, and where I can point them compared to just a year ago. The first out was from BMS, then Merck, then Astra Zeneca, and more companies are following as there are slightly different means to approach the idea.

I can see a point in the future where this will become part of the cocktail of things that are done in primary treatment. While we have epidermal grow factor monoclonal antibodies, which have been around for awhile; now we have one designed around the programed death immune checkpoint signaling pathway, and more mechanisms like this are being currently explored. The next step will be careful proteomic and genetic profiling of patients to determine which combination of these things will work for them, as we have seen with the EGFR attack, it does not work on every patient from every etiology.

Last edited by Brian Hill; 12-12-2015 03:20 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Aug 2011
Posts: 596
Kerri Offline OP
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Thanks for sharing all of your knowledge, Brian.

The future is looking brighter in cancer therapy.

Thanks for all that you do.



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: Dec 2014
Posts: 55
Supporting Member (50+ posts)
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Posts: 55
This is such great news as Brian has suggested this to me already. I am hopeful that I will soon be on one of these as my oncologist has told me it should be the next route I take. I don't want to get my hopes up too high, but the idea of possibly getting a few extra years is very encouraging.


Jeff - 41yrs old/previous smoker
SCC buccal mucosa/jaw bone Stage 4
Nov '14 Partial Mandibulectomy with fibula flap, neck dissection
Jan '15 Rads x35 Cisplatin x2
Apr '15 PET/CT concerning area Follow up MRI no mass.
July '15 PET/CT 11mm nodule in right lower lobe the lung.
Oct '15 PET/CT right lung nodule 3cm mass also new left lung nodules
Nov '15 erbitux
Mar '16 CT tumors are growing again, waiting on next step
June'16 hospice had 3 Opdivo infusions trying to regain health
Joined: Mar 2011
Posts: 1,024
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This is indeed wonderful news.
To have Hope is a fantastic thing.
Having just read your email Brian, I want to take this opportunity to really express my appreciation for all that you do for OCF. Thankyou from the bottom of my heart.
Tammy and Kris.


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!
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So Friday afternoon had a meeting with Dr. Gillison, and she has let me know that early next year she will be the lead investigator on new trials using these drugs in primary treatment. The trials will essentially look at PDL-1 drug with radiation and cisplatin, PDL-1 with radiation and Erbitux ( in patients that have the marker for effectiveness of EGFR inhibitors), with PDL-1, radiation and no chemo. So those trials will allow these to get into the primary treatment realm likely as early as next fall if they have the same impact as they did in these failing patient trials. The future is brighter, and this is just the beginning of the types of therapies. They will also need to start genetic profiling of patients like they did for EGFR, so we can target just the patients in which this pathway or future ones is implicated in the original disease. A decade from now there will be an armamentarium of monoclonal antibody type drugs out there that will have efficacy in very specific patients that show a susceptibility to that particular one working in them.

While OCF has played a very small role in this as millions of dollars have been thrown at this idea from multiple sources, we have been players in small financial donations to research, and most importantly driving patients to the clinical trials that were so successful. We almost filled one trial by ourselves, and I am very grateful that those that we referred felt some comfort in following our recommendation, and that so many of the people that interact with OCF have come to donate what they can to not only keep OCF alive, but to allow us to contribute to things like this that we find promising. In the previous post I eluded to the Xmas ask letter that got mailed out to many people, If you would like to read it since it chronicles a little bit about how OCF came to be and what it has become you can follow this link. http://www.oralcancerfoundation.org/holiday/index.php

Last edited by Brian Hill; 12-12-2015 03:35 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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It's exciting to see things moving forward. Thanks, Brian!


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: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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Posts: 596
Dear Brian,

Reading your Holiday Wish, I felt all kinds of emotions erupt within me: empowerment, inspiration, drive, joy, excitement, a sense of belonging to something greater than what I can ever do alone, belonging, tenacity, and hope...It brought tears to my eyes and passion to my voice as I read it aloud. It was nothing less than magnificent.

This news ignites new hope for patients who otherwise would be considered "terminal". And now, for patients as part of primary therapy!

I am so happy and proud that OCF is part of the future of these treatments!

I am so grateful to OCF this holiday season and every day. May your Holiday wish come true for you and for all of us.

I will be sharing this for sure!

Gratefully yours,
Kerri

Last edited by Kerri; 12-13-2015 11:48 PM.

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: Oct 2012
Posts: 1,275
Likes: 7
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For the Canadian members, this is an article and an explanatory talk from Dr. Pamela Ohashi, Senior Scientist, at the Princess Margaret Hospital on immunotherapy at the hospital.

http://thepmcf.ca/Our-Stories/Insid...most-comprehensive-immunotherapy-program


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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