Immunotherapy Patient Forum - 1266475

dbrock
Posts:162

Operations Director, GRACE

 

I just wanted to take a bit of time to remind everyone that we have a very exciting patient forum coming up fast.

GRACE has partnered with the Melanoma Research Alliance to present a very informative discussion on exciting and promising new Immunotherapy treatments. If you feel you don't know enough about this yet to warrant a trip to Chicago, I would say take a look at some info that is out there. An article I recently came across as an example is linked here:

http://www.washingtonpost.com/national/health-science/new-therapies-rai…

A quote from the article:

“Research activity is just going through the roof,” Topalian says. While Bristol-Myers Squibb, Merck and other companies rush to get their versions of the therapy approved by the Food and Drug Administration for treatment of melanoma and lung and kidney cancers, the substances also are being tested in smaller trials against cancers of the blood, colon, stomach, breast, bladder, liver, head and neck and brain. “The field is just afire now,” says immunologist Gordon Freeman of the Dana-Farber Cancer Institute in Boston.

I personally think that this is so exciting for our community and others that are going through the journey of a cancer diagnosis. I truly wish that this had happened years ago - but it didn't.

I would urge people to think about attending, and if you can't, to pass this information on to not only loved ones and friends, but to your doctors who might be able to pass the information on to other patients. If we can help ourselves or others - we need to do it.

The agenda is available here - https://docs.google.com/document/d/1ih75jS0VuZXm2Jqt-E5BbeqG6-fyZbwJly7…

Information and registration available here - http://www.jotformpro.com/form/42266827790969

We hope to see you there!

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 
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Reply # - October 13, 2014, 06:46 PM

catdander
Posts:

I hope everyone who can will take advantage of this Chicago forum.
Denise, Melissa would be so proud of the work you do.

Reply # - October 13, 2014, 08:28 PM

dbrock
Posts: 162

Operations Director, GRACE

 

Thanks Janine - I do appreciate the mention. However - it is much much more than my small bit in this that everyone should be proud of. Including yourself, Jack, Mark, Derek, Jim, Carlea, our faculty and our full board who does not get much mention but who offers so much feedback and helpful guidance. It takes a village, but this is the coolest village ever.

I hope we will see a great crowd for this amazing panel.
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 17, 2014, 10:01 AM

dbrock
Posts: 162

Operations Director, GRACE

 

I just wanted to offer that if anyone has questions about content for this forum, feel free to ask. We really would love to have a good crowd - the questions that come about with a full room are often SO great, and - like our written forums - very informative themselves.

We hope to see you there!
Highest Regards -
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 17, 2014, 10:59 AM

biggerten
Posts: 83

My wife Lucy and I will be coming down from the Twin Cities, looking forward to this, putting some faces to names, and helping to relieve any anxiety she feels about being a test subject.

Lucy is currently stable and on maintenance Avastin (an arm of ECOG5508), we are educating ourselves for the future. We have an eye on the Roche OAK trial, MPDL3280A versus Docetaxel. This trial is available locally to us.

One question I'll be interested in finding out if anyone knows an answer to-

Currently, (of the PD-1/PD-l1 checkpoint blockade) only Merck's pembrolizumab -Keytruda- is approved for use here in the US, and labeled only narrowly for melanoma (after Yervoy, etc.).

BMS's nivolumab -Opdivo- looks like it may be approved for squamous NSCLC early next year.

We're not ignoring Alimta (or Docetaxel), for we know those will be available for us. Perhaps Erlotinib (although she is EGFR -) will be tried as well.

My question then is - The immunotherapies are only available via trial, or off label. Off label use is reimbursed by Medicare only if a drug is listed in an approved compendium. Does any one know how long of a process that is? That would give us a shot at Keytruda, or perhaps Opdivo, adding a couple possible arrows to our oncologist's quiver.

Reply # - October 17, 2014, 05:30 PM

Dr West
Posts: 4735

I don't think any of these options will have any mengful chance of being compendia listed before the data on nivolumab's large phase III trials in the second line setting are presented. After that, if positive (and everyone is hopeful that will be the case), I suspect it will only be a matter of months before the FDA approves it. Between the presentation of any positive data and an official FDA approval, there may well be a short interval of availability on a compassionate use basis, and I don't know if there will be any real interval between compendia listing and FDA approval. Meanwhile, the other immune checkpoint inhibitors as well as nivolumab will also be the subject of a wide array of clinical trials that will serve as another way to have patients receive one of these agents.

-Dr. West

Reply # - October 20, 2014, 09:33 PM

dbrock
Posts: 162

Operations Director, GRACE

 

Just a reminder! October 26 is coming up quick, and we hope you can join us at the Immunotherapy Forum in Chicago. Click http://www.jotformpro.com/form/42266827790969 to register!

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 21, 2014, 03:24 AM

biggerten
Posts: 83

Thank you Dr West. Exactly the kind of answer I was looking for.

I know it wasn't a medical question, but availability and reimbursement are certainly important issues to cancer patients.

Thanks again, to all the good folks here, practitioners, patients and caregivers who pass on their knowledge and experience to people seeking assistance in their struggle.

Reply # - October 21, 2014, 04:34 PM

elynn
Posts: 4

Any chance this Forum will be streamed? Pretty easy technology these days through uStream, JustinTV and others?

Thanks
Lynn

Reply # - October 21, 2014, 04:41 PM

dbrock
Posts: 162

Operations Director, GRACE

 

Sorry, no! Not this time. We had a sponsor specifically for this at the last patient forum. :) We will, of course, be recording and podcasts will be forthcoming.

Thanks for asking!
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 22, 2014, 10:51 AM

dbrock
Posts: 162

Operations Director, GRACE

 

Countdown to the forum! This Sunday, October 26, at the Hotel Intercontinental - Chicago.

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 26, 2014, 12:29 PM

dbrock
Posts: 162

Operations Director, GRACE

 

A small glimpse of our panel from the afternoon Lung breakout discussion from today...

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 26, 2014, 12:54 PM

dbrock
Posts: 162

Operations Director, GRACE

 

And Dr. Suzanne Topalian speaking in the Melanoma breakout session also today.....

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 30, 2014, 08:06 AM

dbrock
Posts: 162

Operations Director, GRACE

 

Click here to see the writeup post forum in the Melanoma Research Alliance blog, our great partners for this patient forum. http://curemelanoma.wordpress.com/2014/10/28/dateline-chicago-mra-and-g…

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 
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