Clinical trails

[lincolnj8]

Going to my very first visit for my first clinical trial soon. PSA is at .3 and it seems that the zytiga is starting to fail. PSA was over 500 5 years ago and has served me well. Just wondering how Clinical Trails work and are they worth it.

[Tall_Allen]

I've been in several - one for prostate cancer. The care you get on them exceeds normal care. In fact, that is a criticism of them -- the results of clinical trials are often better than normal results because one is so closely monitored.

You will get a full disclosure statement telling you why they think it's beneficial and all the things that can possibly go wrong. Drugs costs are covered, but hospital costs may be billed to your insurance (except on NIH trials).

[lincolnj8 in reply to Tall_Allen]

Thank you very much

[spencoid2 in reply to Tall_Allen]

I am hoping to do a clinical trial of LU177 (one of very few for people who have not had chemo). I have an ethical question as well as a practical one. The study is 2 to one active arm/SOC. The study description mentions that those on the SOC arm who progress "may be" allowed to switch to the active arm. I can get no information on what "may be" means and can not really get any information other than being referred to the clinicaltrials.gov page for this study. I can not talk to anyone until they are actively recruiting and I have no way of knowing if they really will contact me. So far the study has been delayed by two months. So if I do wait for it I will be farther along than I would want to be without doing some other treatment. Abaterone plus Orchiectomy is no longer working.So the ethical question. It will be obvious if I get a radioactive treatment or not. I have a very good Geiger counter that I used when getting various radiotracer scans. Do the study coordinators require you to commit to the trial even if you suspect you are not being treated? Is there any legal or moral obligation to continue when you know you are not receiving treatment? Will leaving one study blacklist you for others?

[Tall_Allen in reply to spencoid2]

You are always free to drop out, and it won't harm your reputation.

[lincolnj8 in reply to spencoid2]

Hopefully I'll find out next week and may be able to answer some of your questions

[tango65]

I have been in 4 clinical trials. There is usually a very detail process to get you enrolled and you will get a lot of information They usually take a lot of blood samples and tests.

They do not charge for all things related to the trial, but they can charge for tests or procedures used in the regular treatment of the cancer. They could charge for measuring PSA or testosterone or a metabolic panel or doing a bone scan, CT scan etc.

You can drop anytime from the study if you feel that is not working or having adverse events that you can not tolerate or want to risk it. I dropped from one of the trials when I started to develop a sensorial peripheral neuropathy and I was afraid it could become a motor neuropathy and affect motility.

What is the clinical trial you are applying to?

[lincolnj8 in reply to tango65]

Thank you for your information. Nothing is set up yet. I agreed to have them today as the oncologist recommended it. All new to me. Maybe after a vacation from the Zytiga, it will start to work again. I'm at .3 on the PSA which is very low. But my PSA has been undetectable for years. I'm still learning lol.

[tallguy2]

Wow, Zytiga served you well! After I failed on Zytiga/Erleada I moved on to trials 2 and 3. In addition to Tall_Allen’s comments I add that some trials reimburse for travel expenses. This has benefited me as I am a commuter patient at MD Anderson Cancer Center from out of state.Finally, I like the fact that I have more frequent scans than I would likely have if I were on chemotherapy. Every 6 weeks in my current Phase 1 trial.

[lincolnj8 in reply to tallguy2]

PSA is now at .7. I really appreciate all of the feedback and information. Still scary for me.

[Hidden]

I was on a clinical trial in 2004 with metastatic prostate cancer. It afforded me what was best termed by a President of a major medical school as ultra-standard of care. I was very formulate. Good luck. I wish you the best.

GD

[lincolnj8 in reply to Hidden]

Thank you for your information. It gives me hope.