| Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm sorry for your troubles Larry. I have no personal experience with immunotherapy, other than Erbitux as a targeted therapy, but two drugs are being talked about as being most significant for the past 15 years are Keytruda (Pembrolizumab) and Opdivo (Nivolumab). There are also other types of immunotherapies. There is a big ASCO Symposium in Chicago that started today, so maybe newer reports will be coming forward in the next few days.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | Thanks, my onc called it molecular is that diff from immune? The Mda trial gave me anal fissures, high BP, high trig. Ended up with pneumonia. Now home and clean since mar feeling better, little fatigue, cough with occasional blood in sputum. I like to be educated on what's up and everyone one always says boy you look good. Then Dr says 2 to 18 months. I'd like to try to stay around, do what I can. Nothing nutty. But I can travel if I have too. I married a energetic younger woman. We have a big loving helpful family. Appreciate it if anyone hears anything. On last note just found out I am HPV+. I don't know if it means anything. Appreciate any help.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I think it's a broad term, molecular therapy, but immune therapy is part of it, I believe. Here is an article that lists different types of targeted molecular therapies for head and neck cancer. http://emedicine.medscape.com/article/854971-overview
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 |
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Don't want to over burden you, but here is another listing/organization I like with many different types of immunotherapies for head and neck cancer, and their clinical trials, that you can discus with your medical team. http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers/head-and-neck-cancerGood luck
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Dear Larry,
John never wanted to find out what his prognosis was. He just kept on moving ahead with his treatments. In a way that is one way of dealing with it. It's out of his hands since no one could predict or influence how the drugs were going to work, so knowing how much time he MIGHT have or MIGHT not have was kind of irrelevant. He did make sure his affairs were in order though.
I would suggest keeping an eye on the pneumonia. Do you have swallowing difficulties? If so, make sure you have a swallowing test and suggestions on feeding from the speech and language pathologist. In John's case, the pneumonia became recurrent and became lodged in his lungs. Please don't take it lightly.
I am sorry things are not better, however, if you look good to your friends, you have to be doing something right.
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: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | Dear Gloria,
I know everyone does things differently. I was a professor for more than 40 years. My wife said I never left school. I always like knowing, my wife does too.
Well my cancer is growing and I need to make the decision of what kind of treatment would be effective and give me the best quality of life. So the more info the better I feel I am making the right choice.
I'm sorry for your loss. I thank you for your advice.
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
| | | | Joined: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | Cancer Research Institute Clinical Trials Finder www.Cancerresearch.orgFree help even gets your Foundation one info and looks for trials for you.
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: Nov 2014 Posts: 73 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2014 Posts: 73 | I wanted to let everyone know I began Opdivo with my onc here at home. On 4th treatment. Feeling great and even forget I have cancer. Great quality of life, tumors are shrinking and enjoying life. Only side effect has been itching but I just combat hat with benedryl spray or cortisone spray. Prior to beginning treatment thyroid gave out so on med for it. It's all good for now, I'm very grateful.
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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