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Questions About Clinical Trials

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Subject: Questions about clinical trials
Date: 09/12/2007

I would like very much to hear from someone who has knowledge about clinical trials.My brother just had all his tests run agin followoing about 4 months of hormone therapy, and 3 weeks of radiation, and it showed that the cancer is in more spots now then when he started treatments. The Doctor told him that he could try a Clenical Trial.   When the remainder of his tests come back which should be soon now, and another MRI to see wheather the cancer has gone to any of the organs, then we will know what the combination drugs will be. The Doctor said that it would consist of two different drugs and talked like it would be given in a form of chemo. He would take a treatment every 3 weeks, then be checked to see if it was helping. Maybe there is some of you who have or are under going Clinicals Trial Treatments or know of someone else who has. I would be most greatful to know more about it. My brothers Doctor told him that if one didn't work then they would try another. The Doctors can't understand why my brother has no pain, and feels good, with the metasized stage 4 cancer that he has. It is in is spine, Pelvis bone, both shoulders and leg. It is a very agressive cancer, so they would like for him to start the treatments as soon as possible.  It is a difficult decision for him  to make, since he feels good now, and don't know what the chemo might do to him. Will he continue to have quality life for whatever time that would be if he doesn't take the chemo. or  will the chemo clinical trial make him livery sick, and do more damage then good by taking away his quality of life as he has it now .I believe that he is going to take it, because it does offer some hope, and he wants to live as long as he can, if it is quality life.. I know that this next question probley sounds pretty dumb, but does the cancer go to the lymph glands before it goes to the bone, or does that come later?  I had just assumed until I read something yesterday, that once the cancer gets outside of the prostrate, that it goes to the lymph nodes and that it then gets into the blood stream, and that is how the cancer spreads to other areas, however I read something different the other day. I truly appreciate so much your taking the time to read my long letter and will be so greatful for any information regarding Clicical trials and what you think about them. Thanks so much again.      Gracie

                  

 

 

Subject: RE: Questions about clinical trials
Date: 09/12/2007

I am a stage IV colon cancer with mets to the liver survivor.  When I was first diagnosed, I was told I could die at any moment, but even with standard treatment, I had 18 months to live tops.  That was July of 2004. 

I knew I wanted better odds than that.  So I signed up for a Stage II clinical trial.  I truly believe that is what made all the difference in the world.  I was the second person to sign up for the trial.  So far, those of us on the trial have done better than those on the current standard treatment.  I have had people I know die, who were diagnosed after me, with a lesser stage than me, die or are dieing. 

I had few problems with my trial.  I worked 50 hours a week and drove 16 hours round trip for my treatment.  I quit chemo in June of 2005.  I have had no evidence of disease since then. 

I can't speak for everyone on a trial, but I know that I picked the right one for me. 

My clinical trial involved taking two kinds of chemo, one systemic and one direct, that had never been offered together.  So, their had been no studies to show what side effects might take place. 

If you look at wikipedia, although any one can edit it, that will give you more guidelines into clinical trials.  Only 300 or so people can sign up for a Stage II trial. 

But not only am I a success story, so is Lance Armstrong who signed up for a clinical trial.  He came through quite well and because people like him signed up for that trial, that treatment is now the standard for his cancer and almost everyone survives it.

 

Subject: RE: Questions about clinical trials
Date: 09/14/2007

 

On 9/12/2007 gracey wrote:

I would like very much to hear from someone who has knowledge about clinical trials.My brother just had all his tests run agin followoing about 4 months of hormone therapy, and 3 weeks of radiation, and it showed that the cancer is in more spots now then when he started treatments. The Doctor told him that he could try a Clenical Trial.   When the remainder of his tests come back which should be soon now, and another MRI to see wheather the cancer has gone to any of the organs, then we will know what the combination drugs will be. The Doctor said that it would consist of two different drugs and talked like it would be given in a form of chemo. He would take a treatment every 3 weeks, then be checked to see if it was helping. Maybe there is some of you who have or are under going Clinicals Trial Treatments or know of someone else who has. I would be most greatful to know more about it. My brothers Doctor told him that if one didn't work then they would try another. The Doctors can't understand why my brother has no pain, and feels good, with the metasized stage 4 cancer that he has. It is in is spine, Pelvis bone, both shoulders and leg. It is a very agressive cancer, so they would like for him to start the treatments as soon as possible.  It is a difficult decision for him  to make, since he feels good now, and don't know what the chemo might do to him. Will he continue to have quality life for whatever time that would be if he doesn't take the chemo. or  will the chemo clinical trial make him livery sick, and do more damage then good by taking away his quality of life as he has it now .I believe that he is going to take it, because it does offer some hope, and he wants to live as long as he can, if it is quality life.. I know that this next question probley sounds pretty dumb, but does the cancer go to the lymph glands before it goes to the bone, or does that come later?  I had just assumed until I read something yesterday, that once the cancer gets outside of the prostrate, that it goes to the lymph nodes and that it then gets into the blood stream, and that is how the cancer spreads to other areas, however I read something different the other day. I truly appreciate so much your taking the time to read my long letter and will be so greatful for any information regarding Clicical trials and what you think about them. Thanks so much again.      Gracie

                  

 

 


 

My only advice to you is not to wait until its too late. By the time the doctor told us we should look at clinical trials and we started the process, the cancer was too far advanced. Trials are very exclusive and each patient must meet certain criteria. Also, people go fomr trial to trial to by time. We were told that most trials are much less toxic than actua chemo. Basically the trial she was supposed to be on was a walk in the park compared to the chemo and radiation she had endured. I understand the quality of life issue, that is why I urge you to start your investigation ASAP, because with this disease things can change in a blink of an eye. Some people surprise us all and beat the odds and others like my mom can take such a drastic turn and no one knows why. Do your research and go with your heart.

 

Best of luck.

Jaime

Subject: RE: Questions about clinical trials
Date: 09/14/2007
Taxotere is the latest chemo but it is only short term , if you combine it with high doses of 'Trinovin' at least 450 mg per day , it might make it more effective ; as used in the current "Overture " trials for ovarian cancer.Trinovin is related to phenoxodial being tested by Marshall Edwards in the US and shown to be effective in late stage PCa .Also diet is extremely important refer book by Dr Charles Myers especially NO saturated fats as in meat . Exercise and meditation help to slow things a little . Best of luck . DonQ
Subject: RE: Questions about clinical trials
Date: 09/14/2007
Dear Gracie, I am very sorry about your brother.  My husband Mark has been participating in clinical trials for about a year.  We were sent to San Antonio, TX to participate with Dr. Anthony Tolcher at START.  Eventhough we were not successful, we met several people who were.  I would highly recommend going to him.  He has access to clinical trials that are not available elsewhere.  Don't give up!  Good luck.  Sondra
Subject: RE: Questions about clinical trials
Date: 09/14/2007

My mother has pancreatic cancer that is inoperable..The doctor's suggested clinical trails for her as well. So we got on the internet and did some research. We came across this trial for " tarceva"..Everything read good, so we ask the dr at the next visit.He said it was still under the "clinical trial" but yes we could do it. He explained that this was a pill form, but only worked with a chemo drug called gemzar..By the time we got everything set up, the trial had ended and this drug had been approved, so her insurance covered this $3700 drug. Clinical trials can go either way, but we were going to go through with it, if it had still been in the trial stage.She starts her first treatment on monday, so I ask for everyone's prayers..I hope this helps you in some way.My prayers are with you and your family..

 

Sonya 

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Subject: RE: Questions about clinical trials
Date: 08/08/2008

Dear Gracie,

There is a great website called www.CancerTrialsHelp.org they have a lot of information about clinical trials.  They also have a service called TrialCheck www.cancertrialshelp.org/trialcheck that will allow you to find specific trials that you would be able to enter.  It is a nonprofit organization that has this site and if you are still having trouble you can call them and they will help you.  I hope this helps!

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