Chris Elliott Fund

Bringing HOPE to the lives of brain tumor patients & their families

April 1, 2015
by Dellann Elliott Mydland
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The Nativis Voyager System – Another Way to Potentially Treat Brain Cancer

It’s not every  day  that I get the opportunity to speak directly to current and potential future investors who are investing in a new device to treat not only brain cancer but, hopefully, other solid tumors as well. I was  delighted when Chair and President, John Butters,  asked me to speak last Monday in Seattle at Nativis’ annual shareholder’s meeting.

I am hopeful that I was able to “encourage” more investment not only into the Nativis Voyager System, www.Nativis.com, but also into other new and innovative bio-tech & bio-med treatments for brain tumors and brain cancer.

The Nativis Voyager System is now in feasibility clinical trials in Seattle, Austin and Long Island, ID #NCT02296580:

  • Seattle:  Swedish Neuroscience Institute/Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment.  The Principal Investigator is Charles Cobbs, MD.
  • Seton Brain & Spine Institute, TX.  The Principal Investigator is Brian Vaillant, MD.
  • Long Island Brain Tumor Center at Neurological Surgery P.C. The Principal Investigator at  this site  is Paul Duic, MD.

For additional information on this trial, please reach out to Deborah Sheffield, MS, dsheffield@nativis.comor to Info@ChrisElliottFund.org and/or Info@EndBrainCancer.org, 800-74-5703 10:30a – 3:00p PST.

While in DC last month, I had  the opportunity to speak directly with Senator Maria Cantwell regarding the NovoTTF device, now known as the Optune Device.  I wanted to encourage Senator Cantwell to help the Chris Elliott Fund and the EndBrainCancer Collaberative to remove the barriers that these companies face while practicing “Best Practices” designated by the FDA.  I also noted the need for a new CMS code as currently, these devices are actually classified as  “Durable Medical Devices” (DME), much the same as a wheel chair, when in fact, these devices should be classified in a similar manner to drug/chemo treatment for cancer or at the very least, they should  have a new classification code.

I look forward to keeping you posted on our Advocacy efforts in DC, on all innovative therapy ad devices to fight brain cancer as well as keeping you updated on the Nativis Voyager System.  Personally, I get goose bumps each time a new therapy and/or device becomes available for brain tumor patients.  The Chris Elliott Fund, www.ChrisElliottFund.org and/or www.EndBrainCancer.org will continue to fight for each patient’s right to IMMEDIATE ACCESS and EXPANDED ACCESS.

Please feel free to reach out directly if you’d like more information, would like to support our efforts or would like to get in touch with the doctors involved in this research and this study.

Blessings,

Dellann Elliott Mydland

Founder & President 

The Chris Elliott Fund

 

March 20, 2015
by Dellann Elliott Mydland
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Teen Who Didn’t Want Chemo….My Thoughts As A Patient Advocate And A Mother.

I was asked to respond to the controversial issue of a Connecticut teen who was refusing treatment for her cancer and I’ve given it a lot of thought, not only as patient advocate but also as a mother. My personal belief, as discussed in the Brittany Maynard case, is that all should have access to the “Death with Dignity” act but ONLY AFTER ALL TREATMENT OPTIONS, STANDARD PROTOCOL, CLINICAL TRIALS AND OFF-LABEL DRUGS THAT SHOW BENEFIT TO THE SPECIFIC DISEASE HAVE BEEN EXPLORED.

When I first read about this, my first thoughts were of course, this 17  year old should have the right to choose, especially if her mother is in agreement. However, when I read the article a second time and focused on the statement,  “ Doctors said chemotherapy would give her an 85% chance of survival but without it, she would die”, it  took me  right back to the Brittany Maynard issue.

Those of us who are patient advocates and work daily with brain tumor specialists who treat GBM, believe that Brittany A) did not know about all of her options and B) nor did she have IMMEDIATE ACCESS to all advanced treatment options/clinical trials that could  have created a better quality of life for her as well as survivorship for a period of time.

In the case of Cassandra C., it centers around whether she is mature enough at 17 (18 in September)  to make  her own medical decisions in regards to receiving treatment/chemotherapy. What matters in this case is… has Cassandra and her family been presented with all other additional treatment options?  If they have not, then it seems reasonable that this is what the Connecticut Supreme Court should potentially be mandating to the patient as well as to her mother.

I believe that everyone should be able to receive all treatments for their illness, especially if they are educated about those treatments/clinical trials, they understand the gains and the risks of all treatment options, and for those options they decide to pursue, they also sign the liability waiver whether that waiver requires a parental informed consent or not.  If and when the patient and their parents are fully educated, have full consent, understand all treatment options and still wish to reject treatment, then I believe the desires of the patient should be respected.

Of interest, while in NYC recently, there was discussion related to what “terminally ill” really is and how it differs from chronic illness and disabilities.  The states of NY, NJ and Connecticut are presently in debate on this issue.  While the bills in these three states reflect a growing movement in the U.S. and currently, the “Death with Dignity” act is legal in the states of WA, OR, MT, NM and VT, I would  like to see an addendum that reflects that all treatment options and advanced treatment options have to be explored prior to a decision being made  by the patient.

As treatment for terminal illness begins to shift to a more “patient focused” approach; there is an improvement in patients’ right to treatments, drugs, devices, and clinical trials; and as more and more states adopt the “Death with Dignity” act; I expect this conversation to get very loud. In response to more and more people continuing to reach out to myself and the Chris Elliott Fund on these heart pressing issues, I am again confirmed in my dedication to seek out industry thought leaders in efforts to represent the “patient public” with a strong voice and a desire to make a difference.

 

Dellann Elliott Mydland

President & Founder of the Chris Elliott Fund to End Brain Cancer

January 28, 2015
by Dellann Elliott Mydland
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You know that “I can’t breathe” feeling?

Right now, I am working with 6 women who are either having a routine MRI this week or have a husband who is having one; MRI’s ordered with the sole purpose of checking on the stability of their brain cancer.  I can just about  hear the “sigh of relief” that is experienced when one’s brain tumor specialist or neuro-oncologist shows them the MRI  film and  states, “all looks good.  No  new tumor  growth”.  Having personally been in that NO’s room several times before, I still get that nervous feeling when a patient or a caregiver with the Chris Elliott Fund tells me “it’s that time again for my routine MRI.  Please pray that it  is  clear……”.

I wanted to acknowledge this feeling of fear experienced by both the patient and the caregiver or family member during this time because I know it is very real.  The days leading up to  a routine MRI to determine  if  there is  new growth or  not has often times been  described as a “roller coaster”.  It is  indeed.  The reference to  “roller coaster” refers to the feelings that  one experiences the week or so before the MRI. One moment, you are confident that all is going  to be ok, that there  will be no new growth and the  next minute you are terrified, wondering if this MRI  could likely reveal tumor growth.  I want to tell  all of you reading this post that this is SO REAL and SO NORMAL.  It  is very stressful.  I remember because I was scared too.  Just prior to my  late husband’s routine MRI’s,  we often didn’t get along the best we could have because both of us were simply scared to death.  I do wish I had some great advice  here……

I would like to open this up for discussion and would welcome your input because I’d love to be able to create an Educational Piece, perhaps  a FACT SHEET that speaks  directly  to this subject.  I encourage those of you  reading this to please step in and  share your thoughts on this subject especially if you have “tips” on how  to cope during this time as either a  patient or  as a caregiver.  I do  know how important helpful advice on  this subject would be  to others. Please feel free  to reply here or email me directly atDellann@ChrisElliottFund.org to share your thoughts.

Thinking of all of you this week who are having your routine MRI’s and praying for clear results as I know this leads to a breath of “relief” and a trip back  to enjoying your routine and your loved ones.

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Blessings,

Dellann

January 15, 2015
by Dellann Elliott Mydland
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I Might Have The MOST Rewarding Job Ever!

Last Friday night, this thought was once again confirmed. The Chris Elliott Fund held its “2ndAnnual Patient, Caregiver & Partner Community Open House”.  Our Brain Tumor Patient Support Services & Call Center is open to the public all year long but we desire to make sure that the patients, their families, our community and our funding partners know that at least once a year, we want them to walk through the doors so that we can say “Thank You”.

As I write this, I have a lump in my throat.  As the Dad of a patient we have helped got  ready to leave, he came forward with  teary eyes, very humbled and said “I just have to give you a hug and say thank you for what you and the Chris Elliott Fund does for brain cancer patients.  I had no idea how much you serve this population.  I want to get involved”.

When my late husband, Chris Elliott, and I started the Chris Elliott Fund on May 18, 2000, our goal was to not only fund research but also to assist brain tumor patients and their caregivers/families with the sharing of our own story, our own experience, what we learned through our experience and what we would do differently as well as assisting them into getting into advanced treatment, treatment that is more than standard  of care.  I’m not going to lie, it has been a long, hard, 12 ½ years while trying to serve others the best that we can given our limited resources & funding.  There have been days were I have considered throwing in the towel because simply getting and bringing in enough funding to meet the enormous need for our free services is one of the most difficult things I have had to do.  BUT, WOW!  When a patient, caregiver or family member comes to me with tears in their eyes and says “Thank You”, I makes it ALL WORTH IT!

I will not pretend to know what it is like to have a child, young or old, with brain cancer, but I do know what it is like to have a spouse with a terminal illness and pass away from brain cancer.  I am grateful for people like the  father who expressed his “Thank You” to the Chris Elliott Fund and I last Friday evening.  These are beautiful gifts.  Thank you for allowing me to work in this field each and every day.

This is also a great time to give a “Shout Out” to all of you who are interested in joining our 2015 Committees.  Please contact me at Dellann@ChrisElliottFund.org if you are interested in joining us in the following ways:

  • Join our Board of Directors
  • Join our Board Vitality/Nominations Committee
  • Join our 5thAnnual “Brains Matter” Awareness, Auction & Celebration Luncheon Committee.  Event is 5/28 at the Bellevue Club
  • Join our 14thAnnual “Chris Elliott Fund Education & Celebrity Golf Tournament” Committee to be held in June or July, Seattle/Eastside area
  • Join our Development/Funding Committee
  • Join our General Event Committee (Seattle area Events and National Events)

Thank you to each of you for your support and for “Being Part of the CURE!”

January 6, 2015
by Dellann Elliott Mydland
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New Clinical Trial!

Happy New Year to each of you!  2015 is starting off with a BANG with a focus on brain cancer patients and new treatment options for rGBM.  I am delighted to finally be able to BLOG about a new clinical trial that is recruiting at the Seton Brain & Spine Institute in Austin, TX and will soon be recruiting as well in Seattle, WA.  I am not at liberty to say more about the Seattle site at this time, but can talk further about this trial in Central Texas.  To learn more about the Seton Brain & Spine Institute, click here:http://www.setonbrainandspine.com/treatment/tumors

Take a peek at this video to learn more about how this DEVICE works on Solid Tumors.  This device is now known as the “Nativis Voyager System”.  This video reflects how well it works and worked on canines.  The data from its use on canines was so incredibly positive, that it was used to get the human trials stared for recurrent GBM.  I have eagerly been sitting on the sidelines watching this technology, the canine clinical trial results and potential treatment for rGBM for the last 3 years. I am now DELIGHTED to see this potential new treatment for rGBM become available for brain cancer patients.  Check it out. Video is located at: https://www.youtube.com/watch?v=zX6eEWuSEQI

The Principal Investigator at Seton is Dr. Brain D. Vaillant.  The contact for this trial if you are interested in getting information and possibly participating is Heidi Herdon, RN, 513-324-7000, ext. 77713, hheerdone@seton.org. This trial is noted as NCT02296580.  I am proud to say that Dr. Santosh Kesari, one of CEF’s Medial Advisory Board Members, is the Study Director for this study.  To learn more, click here: >https://clinicaltrials.gov/ct2/show/NCT02296580

If you are in the Central TX area and interested in enrolling in this trial, please contact Heidi Herdon and it you are in the Pacific Northwest and interested in learning more about this trial, including enrollment, please feel free to contact me directly at Dellann@ChrisElliottFund or at 425-785-8489 or at www.ChrisElliottFund.org.

2015 is already starting off with more and more treatment options for GBM patients.  Let’s keep the momentum going!!!

Blessings,

Dellann Elliott Mydland, Founder & President

The Chris Elliott Fund