Immunotherapy Patient Forum

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This topic contains 14 replies, has 5 voices, and was last updated by Denise Brock Denise Brock 3 years ago.

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October 13, 2014 at 12:02 pm  #1266475    
Denise Brock
Denise Brock

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-raise-hope-for-a-breakthrough-in-tackling-cancer/2014/02/14/b4f8e4fc-8dad-11e3-95dd-36ff657a4dae_story.html

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-fyZbwJly74rGm1or8/edit

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

We hope to see you there!

  • This topic was modified 3 years, 1 month ago by Denise Brock Denise Brock.
  • This topic was modified 3 years, 1 month ago by Denise Brock Denise Brock.
October 13, 2014 at 6:46 pm  #1266485    
catdander forum moderator
catdander forum moderator

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

October 13, 2014 at 7:23 pm  #1266487    
Dr West
Dr West

Yes! We want to have a healthy crowd!

-Dr. West

October 13, 2014 at 8:28 pm  #1266491    
Denise Brock
Denise Brock

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

October 17, 2014 at 10:01 am  #1266544    
Denise Brock
Denise Brock

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

October 17, 2014 at 10:59 am  #1266546    

Tom Norkunas

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.


Wife Lucy DX stage IV adenocarcinoma NSCLC 11/13, T2AN2M1A. Right lung tumor 3.8 cm, nodes and plueral fluid, SUV 5.2. Pluerodesis to deal with fluids – success. EGFR wild type, ALK-. 4 rounds of carboplatin, paclitaxel and bevacizumab, tumor 2.7cm, stable. 2/14, started ECOG 5508 bevacizumab arm 2/18/15 progression. 3/3/15, two brain mets, ineligible for Roche MPDL3280A “OAK” trial – stereotactic surgery to brain mets, pemetrexed second line therapy.

  • This reply was modified 3 years, 1 month ago by  Tom Norkunas.
  • This reply was modified 3 years, 1 month ago by  Tom Norkunas.
October 17, 2014 at 5:30 pm  #1266550    
Dr West
Dr West

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

October 20, 2014 at 9:33 pm  #1266593    
Denise Brock
Denise Brock

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!

October 21, 2014 at 3:24 am  #1266594    

Tom Norkunas

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.


Wife Lucy DX stage IV adenocarcinoma NSCLC 11/13, T2AN2M1A. Right lung tumor 3.8 cm, nodes and plueral fluid, SUV 5.2. Pluerodesis to deal with fluids – success. EGFR wild type, ALK-. 4 rounds of carboplatin, paclitaxel and bevacizumab, tumor 2.7cm, stable. 2/14, started ECOG 5508 bevacizumab arm 2/18/15 progression. 3/3/15, two brain mets, ineligible for Roche MPDL3280A “OAK” trial – stereotactic surgery to brain mets, pemetrexed second line therapy.

  • This reply was modified 3 years, 1 month ago by  Tom Norkunas.
  • This reply was modified 3 years, 1 month ago by  Tom Norkunas.
October 21, 2014 at 4:34 pm  #1266603    

elynn

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

Thanks
Lynn


Dx 2007 with CLL. 2012 entered Ibrutinib/Imbruvica CLL clinical trial at NIH. 7/2012 dx with poorly differentiated adeno K-RAS mutated. 4 thoracotomies 8/2012-7/2014. one 5mm nodule remains.

October 21, 2014 at 4:41 pm  #1266604    
Denise Brock
Denise Brock

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

October 22, 2014 at 10:51 am  #1266631    
Denise Brock
Denise Brock

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

October 26, 2014 at 12:29 pm  #1266685    
Denise Brock
Denise Brock

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

October 26, 2014 at 12:54 pm  #1266687    
Denise Brock
Denise Brock

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

October 30, 2014 at 8:06 am  #1266817    
Denise Brock
Denise Brock

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-grace-immunotherapy-forum/

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