Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 My blood test from yesterday confirm what I suspected, my PSA is increasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday. I have been through virtually every rendition of hormone blockade, see attached. Due to the increase from October to December we had already began our (My Oncologist, my wife 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 requirement 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 Angels, not 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 as a secondary option. A letter of medical necessity was sent to UnitedHealthcare in mid-December, they ahve 30 days to reply. Except for the jump in PSA I am otherwise doing fine. I continue to work full time and am looking for to my 48th birthday later this month and my six year PCa anniversary in mid-February. Peace be with you all. I'll update you once we decide when and where we are off to for the next step in this crazy journey! -- Emerson www.flhw.org Every 2.25 minutes a man is diagnosed with prostate cancer. Every 19 minutes a man, dies from the disease. 1 of 1 File(s) Emerson Charts_ scores_medications_options 12 08 10.pdf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 thanks and all! Best wishes and I hope you can tap into the best of these treatments. I'm right behind you in support and in progression, though we might not have such a choice yet in the UK Update on E [1 Attachment] My blood test from yesterday confirm what I suspected, my PSA isincreasing rapidly. It jumped from 81 on Dec 6th to 142 yesterday.I have been through virtually every rendition of hormone blockade, see attached. Due to the increase from October to December we had already began our(My Oncologist, my wife and myself) attempt to gain access to one ofthree options; XL 184, Abiraterone or Provenge. These are listed inorder of our preference. - XL 184; I am not eligible for the current trial as it requires organinvolvement. There is a new trial that is to open at any time thatremoves this requirement 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 themidwest. All of my paperwork has been sent to a location in LosAngels, not 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 as a secondary option.A letter of medical necessity was sent to UnitedHealthcare inmid-December, they ahve 30 days to reply.Except for the jump in PSA I am otherwise doing fine. I continue to work full time and am looking for to my 48th birthday later this monthand my six year PCa anniversary in mid-February.Peace be with you all. I'll update you once we decide when and wherewe are off to for the next step in this crazy journey! -- Emersonwww.flhw.orgEvery 2.25 minutes a man is diagnosed with prostate cancer.Every 19 minutes a man, dies from the disease. -- Emersonwww.flhw.org Every 2.25 minutes a man is diagnosed with prostate cancer.Every 16.5 minutes a man dies from the disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 FYI to the group, anyone interested in the Abiraterone that was thinking about going to the location in Marina Del Rey, Cait is full at this time. This is personally quite frustrating considering I have been corresponding with them for nearly a month! As a patient, the clinical trial site once again disappoints. For this trial all one can do is send an application through Veritas Medicine, the last time I did this it took several weeks before I was contacted. Does anyone here happen to have the contact name and number for the sites in any of the following:Atlanta, GaMetairie, LaPalm Beach Gardens, Fl Emerson wrote: > My blood test from yesterday confirm what I suspected, my PSA > is increasing rapidly. It jumped from 81 on Dec 6th to 142 > yesterday. > > I have been through virtually every rendition of hormone > blockade, see attached. .... , I am terribly sorry to hear this news. I looked at your attachment and it appears to me that you've tried damn near everything, but there are still a few treatments I've heard of that weren't on your list. See: http://www.hrpca.org/proventreatments.htm I'm not qualified to say whether any of them even make sense for you but you might want to investigate. A friend of mine underwent Revlimid + Leukine and got a few months of benefit from it. Your decision to push your insurer on Provenge sounds like an excellent idea. Even if the other possibilities come through for you, you may eventually want or need Provenge in the future. You said that Abiraterone is available, but not in the midwest. I suggest that when you talk to the people in California, you ask them about getting monitoring and followup care in your own home town. People running a clinical trial will presumably want to talk to you and give you a physical exam in person before admitting you to the trial, but if the follow up care is standard stuff - take certain pills, get certain blood tests, report the results to the clinical trial site, they may be willing to allow your local oncologist to do that part, or to do most of it. I've heard of that being done. The cost to the trial sponsor may not be any higher. I wish you the best of luck. Alan -- Emersonwww.flhw.orgEvery 2.25 minutes a man is diagnosed with prostate cancer. Every 16.5 minutes a man dies from the disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Emerson wrote: .... > Does anyone here happen to have the contact name and number for > the sites in any of the following: > > Atlanta, Ga > Metairie, La > Palm Beach Gardens, Fl Dave, Try going to http://www.clinicaltrials.gov or http://www.cancer.gov/clinicaltrials/search The same information is at both sites, just different search engines and displays. If you can find the specific trial you're interested in, there's usually a listing of all the sites that are participating with phone numbers for each one. My guess is that the phone number will connect you (hopefully directly but maybe through an answering machine) to a nurse, intern or resident who is on the staff of the trial. Hope that helps. Alan Quote Link to comment Share on other sites More sharing options...
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