The irony of the title of this post is uncanny. I wrote the first half at 1pm today. Tonight's update is below!
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My blood test from yesterday confirmed what I suspected, my PSA is increasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday.
Due to the increase from October to December we had already begun our (My Oncologist, Mary and myself) attempt to gain access to one of three options; XL 184, Abiraterone or Provenge. These are listed in order of our preference.
- XL 184; I am not eligible for the current trial as it requires organ involvement. There is a new trial that is to open at any time that removes this requiremen,t but waiting is not really an option.
- Abiraterone; the good news is more and more sites are being added to Open Label Phase III Trial. The bad news is none are available in the Midwest. All of my paperwork has been sent to a location in Los Angeles, now we wait and see.
- Provenge; because this is not going to focus on reducing my PSA (according to what I have read) we are pursuing this as a secondary option. A letter of medical necessity was sent to UnitedHealthcare in mid-December, they have 30 days to reply.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~So this evening I get an email from the trial site in Los Angeles and now it turns out that their site is full. I wish they would have told me that weeks ago! Mary talked with the site coordinator as recently as Thursday, and there was no mention of full capacity being an issue. Discussion was clarifying that Monday's blood tests would be forwarded asap. I am frustrated beyond imagination. Time is of the essence. We are already scrambling to pursue access in either Atlanta, New Orleans or Palm Beach, FL. More to follow as we find things out!
5 comments:
David - How frustrating for you - how is it that a clinical trial doesn't understand the urgency of your situation? Grrrrr!
You are in our thoughts and we're hoping for a SPEEDY answer to your need.
Our best to you & your family always,
Susan & Don
Your Florida friends
First time reading your blog. Without reading it all - possibly the following trial may be a criterea match - if so, then a chance you would get ipi
http://clinicaltrials.gov/ct2/show/NCT00861614
best of luck
another trial for ipi
http://clinicaltrials.gov/ct2/show/NCT01057810
hth
David - If you end up in Palm Beach please shoot me an email.. I have a place for you to stay there. Whitwoman
David -- Please look at UWHC-Carbone Cancer Center for experimental meds that hold promise.MK4827 (a PARP inhibitor) which has had good results in women with breast and ovarian cancers and now being tried with several other cancers including PCA.Other sites are Moffett in Tampa, FL and England.
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