An update as of 09/09/2017

Good Morning all.  As you know yesterday we had an appointment with Dr. Tejani here at Wilmot Cancer Center.  It was a good appointment and we walked away feeling better than we have in quite some time.

Update on what has taken place the last 8-9 days…  after my cry for help and my oversharing of frustration and sadness on 8/31/17, we started to get a little traction.  A dear friend from our online support group connected me with a truly AMAZING woman from ICAN – International Cancer Advocacy Network – which is a Not For Profit organization.  She is the President & CEO is incredibly well connected and deeply passionate.  She will help me find the right treatment for Tim; that I am certain of.  She has spent countless hours with me already and has opened doors that we didn’t know were there.  Anyways…  this is an organization that I already hold near and dear to my heart and am planning to invest in going forward.

She has identified some really good options for Tim.  Now it is the work of determining where the best location is.  The trial that she and Dr. Tejani still continue to be “hot on” for Tim is the DART Trial.  It is two Immunotherapies that when combined are proving to demonstrate really strong, promising results.  It think yesterday we saw a statistic of mid-60% for a positive response.  WE WANT THIS TRIAL SO BAD!!!!!!!!!!!  So this is the one that has been ‘put on hold’ through the NCI, but there are other options to possibly still get these two medicines as they are approved separately, just in trial now to prove that the combination is what REALLY works (and to monitor the risks as there are risks).  We are working a few angles now with Marcia (ICAN) and with Dr. Tejani.  Hoping it opens back up via the NCI.  If not, pushing for a possible options here locally with support of the Principle Investigator of the trial who is out UCSD (San Diego).  The two Doctors there, may partner up with our Dr. here.  Again, so many moving parts that we have to manage right now.

Next step is to get to the NCI on Monday, 9/11.  We will meet with the Doctors there and learn about all trials available to Tim and decide what our best next move is.

There is also a VERY promising trial right now at MD Anderson in Houston.  Logicistically, Houston isn’t our easiest treatment center but we will go WHEREVER we have to for the right treatment.  As soon as we are back on Tuesday from the NCI appointment I will start moving quickly with MD Anderson.  We sent everything to Rutgers but it proved to be nothing.

So to sum it up we have the NCI (hopefully), MD Anderson and our local Oncologist in partnership with San Diego.  Or we go to San Diego directly.

Dr. Tejani has drawn a line in the sand though…  we need to have a plan solidified and on treatment within the next two weeks with a trial or he is moving forward with treatment.  It has already been over a month with NO treatment and we cannot go much longer.  We were happy to learn yesterday that Dr. Tejani has a couple of weapons in his arsenal that we will implement quickly if need be and some with very promising statistics.

So nothing definitive to share with you yet, but we are feeling energized and positive that we will have something this week (we hope and pray).

Thank you for your continued support.  We are in rocky waters right now, but feel that our faith and love will help pull us through.

XOXO, Denise

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