Clinical Trials

Barritoo
Barritoo Member Posts: 6
in Prostate Cancer #1
I have metastatic prostate cancer. I have been on Eligard injections and casodex. My doctor took me off casodex, it wasn't helping. Last PSA reading was 6.90. My doctor suggested Clinical Trials, has anyone had any experience with these trials?

Comments

  • Barritoo
    Barritoo Member Posts: 6
    #2
    New to this site
    Hi,
    I signed onto this site today, for the first time. I'm wondering if I signed in correctly. I asked if anyone is familiar with Clinical Trials, had no response. That's Ok if no one has any answers, but could someone just let me know if your reading my postings so I know I'm signed in the right way.

    Thanks
    Tony
  • jminnj
    jminnj Member Posts: 129 Member
    #3
    Barritoo said:

    New to this site
    Hi,
    I signed onto this site today, for the first time. I'm wondering if I signed in correctly. I asked if anyone is familiar with Clinical Trials, had no response. That's Ok if no one has any answers, but could someone just let me know if your reading my postings so I know I'm signed in the right way.

    Thanks
    Tony

    Tony,
    you did log in and
    Tony,

    you did log in and post correctly. I unfortunately do no have any information on clinical trials.
  • Barritoo
    Barritoo Member Posts: 6
    #4
    jminnj said:

    Tony,
    you did log in and
    Tony,

    you did log in and post correctly. I unfortunately do no have any information on clinical trials.

    Thanks, JminnJ, at least I
    Thanks, JminnJ, at least I know I'm not talking to my self. I will be hear to read all of the other friends I see on this site,
  • PawPaw J
    PawPaw J Member Posts: 34 Member
    #5
    Barritoo said:

    Thanks, JminnJ, at least I
    Thanks, JminnJ, at least I know I'm not talking to my self. I will be hear to read all of the other friends I see on this site,

    clinical trials
    Barritoo, Dont worry that you have not got a lot of immediate response. Even though you may see 50 or so members online many do not respond as a lot are new to the site as well as to their situation. There are others though with a lot of knowledge of this dreaded disease that we all are going through. You will get response, it just takes a little time sometimes. You will see as you read through the different post that there are so many who care and even though I have just started this journey( open surgery Tuesday) I already feel like I have a big family that I have never met or even talked to. Good luck and may God bless. Johnny
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #6
    PawPaw J said:

    clinical trials
    Barritoo, Dont worry that you have not got a lot of immediate response. Even though you may see 50 or so members online many do not respond as a lot are new to the site as well as to their situation. There are others though with a lot of knowledge of this dreaded disease that we all are going through. You will get response, it just takes a little time sometimes. You will see as you read through the different post that there are so many who care and even though I have just started this journey( open surgery Tuesday) I already feel like I have a big family that I have never met or even talked to. Good luck and may God bless. Johnny

    GUESSING from your comment
    Tony (Barritoo)

    Welcome “aboard” this boat of PCa survivors. You will find here many stories and reports that may be of help in your concerns. We are used to share each one’s story to help all who participate or read the threads. We are not doctors so that the best advice to you comes from your medical caregivers.
    Maybe you will want to share more info on your case so that guys can pass you their “best” opinions.

    GUESSING from your comment about the withdrawal of Casodex, I would think that you have been on hormone blockade and that the therapy stopped working. This usually happens when the cancer becomes refractory (hormone independent) and it starts feeding on the drug itself. These sorts of cases are called Hormone Refractory Prostate Cancer (HRPC) to whom there are established protocols of care.

    The first recommended action is to stop the “feed”, meaning to stop taking the typical anti-androgen Casodex.
    Depending on the particulars of each HRPC case (age, treatment history, other existing illnesses, symptoms, aggressivity-grade of cancer, metastasis, etc.), oncologists follow different routes; they may introduce a second-line of hormonal therapy or move into chemotherapy or still in to a combination of both.

    These procedures are not experimental, have years of application and lately cases similar where some drugs have failed, are treated with the “marvellous” newer drug named Zytiga (Abiraterone acetate), with fewer side effects and very effective in the intratumoral fight of advanced refractory cancer.

    Other drugs are still under trials (Phase 2 or 3) and many have already proved to be efficient. Surely not everyone can have access to the trials. It must have certain characteristics. This may be your case and your doctor is recommending you to get in one of the Clinical Trial which could be an excellent way for you to get the latest drugs (not on sale yet or at disposal in folk’s clinics). The drawback of clinical trials is that some involve placebos and one never knows if in fact one is of the group receiving the “pill”. In your shoes and if decided to go through it, I would make it sure that I get the true thing.

    You can read about details of Abiraterone in the net and you can check for posts in this forum regarding its trials results and accounts. I heard that this drug (Abiraterone) is still been given free to certain patients. The office of famous oncologist Dr. Charles Myers has been involved in the trials and may give you some info on the matter. Just type his name in a net search engine to find about details.

    Many institutions and some pharmaceuticals like J&J are doing trials (on the way or planned) on drugs and treatments for prostate cancer cases. You can research their sites too.

    The government has this;
    http://clinicaltrials.gov/ct2/results?term=refractory+prostate+cancer

    Here is a site with many informative links;
    http://www.webmd.com/prostate-cancer/guide/prostate-cancer-clinical-trials

    This site has an article on recently approved drugs for prostate cancer;
    http://www.nytimes.com/2011/06/28/health/28prostate.html

    My opinion is that you should gather more details on your status before making any decision.

    I hope my post is of help to you.

    Wishing you a continuous good control of your case.

    VGama
  • Kongo
    Kongo Member Posts: 1,166 Member
    #7
    Clinical Trials
    Barritoo,

    Welcome to the forum. I am in a clinical trial for a SBRT type of radiation known as CyberKnife. Before I signed up, I did a bit of research on clinical trials in general that you might find useful.

    First, you have to read the fine print. Clinical trials are required to be transparent and are approved by the NIH in the United States. There are also different phases...basically early with a small group and later with a broader population.

    Ask to read the trial protocol and pay attention to the intent of the trial, the expected outcomes, and potential risks. You will also want to know who is conducting the trial such as a drug company, an equipment manufacturer, or a research institute or consortium.

    Each trial has an administrator assigned who can provide you the information you need as is available to answer any questions you might have. Be sure to talk to them.

    You can google the drug you're interested in along with "clinical trials" to get information on which trials are going on and what the acceptance criteria is for the trial.

    One thing about clinical trials -- most state laws are REQUIRED to cover you if you are participating in a cancer related clinical trial...even if it would normally be considered "experimental."

    Each trial is different but I hope that these general thoughts are useful. Dig into the details before proceeding.

    Best of luck to you.

    K
  • Barritoo
    Barritoo Member Posts: 6
    #8
    Kongo said:

    Clinical Trials
    Barritoo,

    Welcome to the forum. I am in a clinical trial for a SBRT type of radiation known as CyberKnife. Before I signed up, I did a bit of research on clinical trials in general that you might find useful.

    First, you have to read the fine print. Clinical trials are required to be transparent and are approved by the NIH in the United States. There are also different phases...basically early with a small group and later with a broader population.

    Ask to read the trial protocol and pay attention to the intent of the trial, the expected outcomes, and potential risks. You will also want to know who is conducting the trial such as a drug company, an equipment manufacturer, or a research institute or consortium.

    Each trial has an administrator assigned who can provide you the information you need as is available to answer any questions you might have. Be sure to talk to them.

    You can google the drug you're interested in along with "clinical trials" to get information on which trials are going on and what the acceptance criteria is for the trial.

    One thing about clinical trials -- most state laws are REQUIRED to cover you if you are participating in a cancer related clinical trial...even if it would normally be considered "experimental."

    Each trial is different but I hope that these general thoughts are useful. Dig into the details before proceeding.

    Best of luck to you.

    K

    Thanks
    Thanks, PawPawJ, VGama, Kongo. I can't believe I waited so long to join this site. I've been going through this for two years now. There have been more downs than up. Your information was very helpful, I speak with my doctor on August 19th along with some one from Clinical Trials. I will let you all know how I feel about these trials. I feel great, I just need to have something that works for me. I go to MD Anderson Cancer Center here in Orlando, Florida, I feel comfortable with my doctors, but it feels good hearing from you all. Thanks again.

    Tony
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #9
    Barritoo said:

    Thanks
    Thanks, PawPawJ, VGama, Kongo. I can't believe I waited so long to join this site. I've been going through this for two years now. There have been more downs than up. Your information was very helpful, I speak with my doctor on August 19th along with some one from Clinical Trials. I will let you all know how I feel about these trials. I feel great, I just need to have something that works for me. I go to MD Anderson Cancer Center here in Orlando, Florida, I feel comfortable with my doctors, but it feels good hearing from you all. Thanks again.

    Tony

    Clinical Trials at MD-Anderson
    Tony

    You are welcome.
    MD Anderson CC is known for its excellent medical practice and it has been involved in the Abiraterone Trial too. They have their own site regarding clinical trials were you can check by cancer type;
    http://www.mdanderson.org/patient-and-cancer-information/cancer-information/clinical-trials/clinical-trials-at-md-anderson/index.html

    I would recommend you to prepare a List of Questions for your next meeting on Aug 19th. You could inquire about the Abiraterone or for alternatives in case you do not feel fully confident with their trial proposal.

    Hope for the best.

    VGama
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #10
    PawPaw J said:

    clinical trials
    Barritoo, Dont worry that you have not got a lot of immediate response. Even though you may see 50 or so members online many do not respond as a lot are new to the site as well as to their situation. There are others though with a lot of knowledge of this dreaded disease that we all are going through. You will get response, it just takes a little time sometimes. You will see as you read through the different post that there are so many who care and even though I have just started this journey( open surgery Tuesday) I already feel like I have a big family that I have never met or even talked to. Good luck and may God bless. Johnny

    PP Johnny
    Johnny

    Surely you are a member of the family. You may want to share your case too after fully recover from surgery.
    I wish you a successful out-come.
    Hope for the best.

    VG
  • Barritoo
    Barritoo Member Posts: 6
    #11
    VascodaGama said:

    Clinical Trials at MD-Anderson
    Tony

    You are welcome.
    MD Anderson CC is known for its excellent medical practice and it has been involved in the Abiraterone Trial too. They have their own site regarding clinical trials were you can check by cancer type;
    http://www.mdanderson.org/patient-and-cancer-information/cancer-information/clinical-trials/clinical-trials-at-md-anderson/index.html

    I would recommend you to prepare a List of Questions for your next meeting on Aug 19th. You could inquire about the Abiraterone or for alternatives in case you do not feel fully confident with their trial proposal.

    Hope for the best.

    VGama

    Thanks again VGama
    Went on the site at MD Anderson, that you suggested, it was great, very informative. I was impressed that you knew about the site, I live here and didn't know about it. I do trust MD Anderson, and my doctors, but you can never have enough information. Just by being on this site for 1 day I have learned so much, and I'm getting my questions lined up. Thanks to all my new brothers. I will keep reading this site and hopefully will be able to help others also.

    Tony

Discussion Boards