Well, a new story begins......Final Update

jcortney · January 2016

Hi Folks,

Those of you that have been around for a while know my history, but a quick recap might be in order. In 2012 I was diagnosed with Sq HPV+ BOT with the lymph nodes on both sides of my neck involved. Went through induction chemo and rads. I had a reoccurrence in 2014 that resulted in a radical neck dissection and thyroid removal. After that, treatment with eributux and methotrexate for almost a year till the side effects of the MDX just got too severe. I had significant reductions in tumor size system wide with the MDX.

So, that brings us to the "new story".

Last week I was admitted to a trial of Keytruda. This drug is a new PD-1 therapy that has been approved for treatment of non-small cell squamous THAT BEGAN IN THE LUNGS. My trial is for squamous that began in the head and neck. I'm infused every three weeks with weekly blood workups and CT's around every 9 weeks. If it works, it will cause my body's immune system to attack the cancer cells. I guess we'll see. I'm now just about a week into my first infusion with no side effects whatsoever.

Since this should be of interest to all here, I'll post regularly so you can see how it's working. From everyone I've spoken to and all that I've read, this is the future of cancer treatment.

Good luck everyone,

Joe

Noellesmom · January 2016

Wonderful news!

I have been anxiouslywatching for news that these new immune system simulators would be used by one of our head and neck folks.

Please keep us posted - that our own immune system could attack and defeat cancer is not new. It is thought it happens every day on a smaller scale.

It is the engineering of such a task and helping our own body that is wonderful.

wmc · January 2016

Good News Joe.....Thanks

Joe that is very good news. I have been hoping they would let you in "A Trial". Most of the time it just makes no since that they won't let someone in that needs it so much, because "it started in H&N, so it has to be treated as that and can't treat is as lung even that both are SSC. They might not get the information they are looking for the Lung study, but it did save someone, not just a number. I am glad you did get in and hope it does what it needs to for you. Thoughts and prayers.

Bill

CivilMatt · January 2016

bless you

Joe,

Nice to hear good news about the future.

I hope it works well for you.

Good luck,

Matt

supagama · January 2016

Interesting!

Hi Joe:

I find that so interesting as I really hadn't heard much about it til yesterday and was up on the net til the wee hours investigating PD-1 therapy. Everything I gleened from it made such perfect sense! Best of luck to you and can't wait to hear about your progress.

Wendy

bebo12249 · January 2016

Hope all goes well. In our

Hope all goes well. In our prayers.

Joanielo · January 2016

Exciting!

I can't wait to hear more about this and how everything goes for you! Good luck!

jcortney · January 2016

wmc said:
Good News Joe.....Thanks
Joe that is very good news. I have been hoping they would let you in "A Trial". Most of the time it just makes no since that they won't let someone in that needs it so much, because "it started in H&N, so it has to be treated as that and can't treat is as lung even that both are SSC. They might not get the information they are looking for the Lung study, but it did save someone, not just a number. I am glad you did get in and hope it does what it needs to for you. Thoughts and prayers.

Bill

Stupid

Bill,

They actually were pretty successful in the lung study. Keytruda and Optivo are almost the same drug and both are approved for SQ in the lungs. Why in the world it takes a trial because it started somewhere else must make sense to someone, just not me or my Doc.

This trial is not a simple Keytruda trial actually. There are two groups (randomized) one gets Keytruda only, the other a new drug that attacks a protein in cancer cells. It's designed (the trial) to see if it improves the response of Keytruda by itself.

J.

Barbaraek · January 2016

Thank you

for blazing a trail, Joe. We are all pulling for you.

Barbara

donfoo · January 2016

Great news!

Joe,

So glad you checked in Joe. There is so much promise with the new immunotherapies. We're all rooting for you. Please post updates as often as you're up to it. I'm sure you'll find at least some interest here.

Don

Hondo · January 2016

Hi Joe

Glad to see you still around, and praying that this will work for you.

Never never give-up

Tim

armana · January 2016

Your new story

Joe, I am new to this site. I was diagnosed stage 3 tonsil cancer sept 2014, got 6 1/2 weeks radiation with no chemo. My last pet scan sept 2015 showed no cancer.

Now, I am worried about recurrence. I see you had recurrence in 2014 and had to take chemo but I guess there is still cancer since you are going through immune therapy.

I see that you got treatment at Baylor in the Dallas / Fort worth area. Are you getting your immune therapy at Baylor ?

I found the following article about immune therapy couple of months ago and I like to know if this is the treatment you are getting.

http://www.theguardian.com/science/2015/dec/09/pioneering-cancer-treatment-engineers-immune-systems-to-fight-disease?CMP=twt_a-science_b-gdnscience

god bless you and hope to hear from you.

Arman

jcortney · January 2016

armana said:
Your new story
Joe, I am new to this site. I was diagnosed stage 3 tonsil cancer sept 2014, got 6 1/2 weeks radiation with no chemo. My last pet scan sept 2015 showed no cancer.

Now, I am worried about recurrence. I see you had recurrence in 2014 and had to take chemo but I guess there is still cancer since you are going through immune therapy.

I see that you got treatment at Baylor in the Dallas / Fort worth area. Are you getting your immune therapy at Baylor ?

I found the following article about immune therapy couple of months ago and I like to know if this is the treatment you are getting.

http://www.theguardian.com/science/2015/dec/09/pioneering-cancer-treatment-engineers-immune-systems-to-fight-disease?CMP=twt_a-science_b-gdnscience

god bless you and hope to hear from you.

Arman

Somewhat different

Arman,

Thanks for your thoughts, yes I'm getting treatment at Baylor but my treatment is not quite like the example you shared. PD-1 PD-1L treatment is fairly well explained here:

http://www.immunooncology.bmsinformation.com

As for being worried about the beast rearing it's head, worry gets you no where. There's little you can do to make a difference so, like somone on this board told me, "don't borrow tomorrow's trouble today". Enjoy being NED and enjoy you life and family.

Best Regards,

Joe

phrannie51 · January 2016

Oh Joe!!!

I am so excited for you!! I'm super interested in how this treatment goes for you, and the side effects, if any, that go with it. Do you keep going every three weeks for infusions until something changes...I mean is there a time limit it on it?

Anyway, this is wonderful news!! I'm glad you're going to keep us updated on the progress.

p

louhou13 · January 2016

Another story...

Hello Joe, I am cutting and pasting an answer I just posted under a different heading. I, obviously am a big fan of immunotherapy. Good luck!!

Hello, I do not post often but do read the posts. I was originally diagnosed in 2012 with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.

I"m more than happy to answer questions if you would like.

corleone · January 2016

jcortney said:
Stupid
Bill,

They actually were pretty successful in the lung study. Keytruda and Optivo are almost the same drug and both are approved for SQ in the lungs. Why in the world it takes a trial because it started somewhere else must make sense to someone, just not me or my Doc.

This trial is not a simple Keytruda trial actually. There are two groups (randomized) one gets Keytruda only, the other a new drug that attacks a protein in cancer cells. It's designed (the trial) to see if it improves the response of Keytruda by itself.

J.

Hi J.

Thank you so much for sharing this. Very interested to learn more about this, see how things are going, and the efficacy of the treatment. Can you tell more about the study, or send a link to the actual study? What phase, if it’s blinded or not, and what is the other new drug.

Thanks in advance.

jcortney · January 2016

phrannie51 said:
Oh Joe!!!
I am so excited for you!! I'm super interested in how this treatment goes for you, and the side effects, if any, that go with it. Do you keep going every three weeks for infusions until something changes...I mean is there a time limit it on it?

Anyway, this is wonderful news!! I'm glad you're going to keep us updated on the progress.

p

Thanks Phran

They tell me, that in most cases, after 3 cycles (9 weeks-3 infusions to a cycle) if you don't see an improvement, you probably won't. This is a long trial, I can stay on the drug for up to 2 years on their nickel (I'm told $10K+ per dose)

So far, except for a slight case of fatigue, I've not experienced any side effects. My doc told me he didn't expect any. There are some acute contradictions to the drug, like your immune system attacking other organs, but they are very rare.

More as I have info.

Joe

jcortney · January 2016

louhou13 said:
Another story...
Hello Joe, I am cutting and pasting an answer I just posted under a different heading. I, obviously am a big fan of immunotherapy. Good luck!!

Hello, I do not post often but do read the posts. I was originally diagnosed in 2012 with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.

I"m more than happy to answer questions if you would like.

Thanks

Thanks, I'm sure I'll have lots of questions as time goes on.

joe

jtl · January 2016

Good News

Like everyone else on this forum, I think it is great that there are trials for this type of cancer.

Best of luck.

John

lifeisDHA · January 2016

Thank you for posting the updates.

I have been reading your stories and hope this immunotherapy will work!

luv_freedom · January 2016

new treatment

That sounds awesome about a new treatment! Unfortunatly I had a liver transplant in July 2014 and I think with that issue I'll be unable to get something like that. I think it would kill my new liver since I have to take anti rejection pills every day. I only did the radiation as a follow up after my surgery In July 2015. I had a lot of trouble with side effects. If the cancer comes back I don't know what options I'll have. I just put in the Lord's hands and enjoy life while I can.

Gary

Well, a new story begins......Final Update

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