After submitting all my records to u. Of Miami for the lymparza trial for targeted drugs for Brca 1 mutation, I met with the chief oncologist. It looked like he was looking for excuse not to let me in. All people in waiting room looked like they were end stage and were in wheelchairs. He kept asking if I had pain and I said no.. He thought that no pain and a good performance rating was quite unusual after nine years. He acted like I was lying about being in stage 4. He finally looked at scans and excused himself. He came back a few minute later and said after checking with directors of the tapur trial that i was not acceptable because I had no measurable soft tissue disease, like in liver, lungs and lymph nodes. Bones do not count. Well I apologized that I was not sick enough and left. I had backup plan and receive my lymparza from drug company free for one year.My regular Medonc will monitor me.
Went to Lynparza trial but was not ac... - Advanced Prostate...
Went to Lynparza trial but was not accepted .
Here we are fighting to survive and want to participate in trials and ...
rejected !!!
So sorry to hear this story...I believe we should all go out and volunteer for trials...that's how we speed up getting answers...so many won't volunteer...I did an apalutamide study at Cleveland Clinic...
I salute you, sir...for your volunteering, your courage, and your desire to increase the knowledge base about this beast... hope you get the med--and it works for a long, long time
All the best,
Fish
I definitely would not take Lynparza outside clinical trials. It has significant side effects.
Hopefully the side effects relating blood disorders are found in people who did multiple lines of chemotherapy and have weakened bone marrow and myelosuppressive problems from those chemotherapies. I have more confidence in being followed by my local oncologist who seems to care more than I saw in the brief experience with trial personnel. In Miami, most of the oncologists are graduates from university of Guiana or similar places. No world class here.
In addition , women have been taking parp inhibitors outside of trials for breast cancer for years.
I had read a study reporting on the use of Lynparza, cannot find it right now. From this study I learned that Lynparza is a strong drug which can have significant side effects. This is not a "let's see if it works" drug. However, since you have a BRCA1 mutation and have an MO that is monitoring you, I think it makes sense to use it in your case. I do not think one should always wait till nothing else helps any more. This may have been the intention in the trial you wanted to join.
I would read the existing trial reports for Lynparza for PCa to know what side effects could occur and what treatment outcomes to expect.
Good for you for trying, for attempting to help other men and yourself by participating in a clinical trial. Good luck with your regular oncologist.
Drcrunch,
Good on you -- keep us posted -- glad you have found a MO who will try something other than 10 year old SOC which is minimally better than nothing.
Lynparza is one of several PARP drugs in clinical trials. You may qualify for one of the others currently looking for participants as they each have different criteria.
Thanks abunch Drcrunch....
Their future oncologist better hurry cause Sears is closing, they'll have to buy their degrees somewhere else.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 02/08/2019 6:05 PM EST
My husband is a part of this Tupar or tapur trial and he has no cancer in his soft tissue, just bone mets that are shrinking very, very slowly. But they are shrinking and that's better than growing. We go to Cancer Treatment Of Atlanta. His oncologist suggested this trial and they monitor your progress monthly with all scans and MRI's w/o charging insurance. More info to work with and more answered questions being there is a monthly meeting of all Dr's on his case. More confidence with such a great team rallying for you!?! I would not return to a Doc with 'No's', and not lets try it allllll.
From a Post I was going to put on Facebook, but didn't.
Paul
Feeling very hopeless at this point.
Denied for Vision Trial
