How can a person know which clinical trial to enter?
They are all experimental. Sometimes you are presented with more than one. Sometimes the one you want is closed to more applicants. Sometimes the one that seems promising isn't going to start for another 4 months and you need to do something now.
Doctors can guide you, but each has trials they are working with. You want the one with the least side effects but the most potential for working. How are you suppose to know because they don't know.
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Re: How should you choose a clinical trial?
Hi Terryj,
I've been keeping and eye on clinical trials for EJ -- he is 3 1/2 years out from his SCT and I'm trying to be prepared. I've been mostly interested in drugs in later stages of development, as EJ still has a lot of options available to him, so at this point he shouldn't need to take an unnecessary risk. In addition to following the stories about those drugs on the Beacon and on other web sites, I'm also interested in what drugs he would receive if he happens to be in the control arm of the study. I'd like that treatment protocol to be similar/the same as what he would receive if he wasn't in a clinical trial.
Good luck!
Lyn
I've been keeping and eye on clinical trials for EJ -- he is 3 1/2 years out from his SCT and I'm trying to be prepared. I've been mostly interested in drugs in later stages of development, as EJ still has a lot of options available to him, so at this point he shouldn't need to take an unnecessary risk. In addition to following the stories about those drugs on the Beacon and on other web sites, I'm also interested in what drugs he would receive if he happens to be in the control arm of the study. I'd like that treatment protocol to be similar/the same as what he would receive if he wasn't in a clinical trial.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: How should you choose a clinical trial?
Hi there. I'm getting ready to start my second clinical trial. I'm fortunate to be in Seattle, where trials are going on all the time. I rely on my myeloma oncologist to guide my decision. Also, the consent process is pretty extensive, so you get a lot of information and significant opportunity to ask questions. I've been on almost every treatment for myeloma along with 2 stem cell transplants, so right now clinical trials are about my only option until some new drugs are approved.
Good luck to you.
Good luck to you.
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micallie
Re: How should you choose a clinical trial?
Hi Terrij,
You're asking a great question! How do you choose a clinical trial?
Because I've posted a few times in the Beacon forums describing my (positive) experience with being in a clinical trial and have advocated that Beacon readers strongly consider participating in clinical trials if offered the opportunity, I feel like I should attempt to answer your question.
From reading your post, I think you're asking the question in more of a philosophical manner than in a practical step-by-step manner. How do you know what's going to work and have minimal side effects? I think that's your real question. And that's the question we all have about any treatment, when you get right down to it.
Unfortunately, the answer is we never know for sure. We do have to rely on our doctors' recommendations a lot. And that includes recommendations from doctors we've consulted for second opinions. But we also have a responsibility to educate ourselves about multiple myeloma and various treatments so that we can intelligently discuss options with our doctors. (And from your post, it sounds like you've been doing this.) Ultimately, we as patients need to be comfortable with the decisions being made about our treatment. And my comfort level goes up the more I understand (or at least think I understand) something.
From a practical standpoint, http://www.clinicaltrials.gov has a nice searchable database of clinical trials in the United States. And http://www.cancer.gov/clinicaltrials has good information about cancer clinical trials, including definitions of the different phases of clinical trials. What phase a trial is in should be an important piece of data for anyone considering a trial..
I'm not sure if this exactly answers your question, but I hope it helps.
Mike
P.S. to micallie: Good luck to you in your next phase of treatment. Please keep us posted on how things go for you.
You're asking a great question! How do you choose a clinical trial?
Because I've posted a few times in the Beacon forums describing my (positive) experience with being in a clinical trial and have advocated that Beacon readers strongly consider participating in clinical trials if offered the opportunity, I feel like I should attempt to answer your question.
From reading your post, I think you're asking the question in more of a philosophical manner than in a practical step-by-step manner. How do you know what's going to work and have minimal side effects? I think that's your real question. And that's the question we all have about any treatment, when you get right down to it.
Unfortunately, the answer is we never know for sure. We do have to rely on our doctors' recommendations a lot. And that includes recommendations from doctors we've consulted for second opinions. But we also have a responsibility to educate ourselves about multiple myeloma and various treatments so that we can intelligently discuss options with our doctors. (And from your post, it sounds like you've been doing this.) Ultimately, we as patients need to be comfortable with the decisions being made about our treatment. And my comfort level goes up the more I understand (or at least think I understand) something.
From a practical standpoint, http://www.clinicaltrials.gov has a nice searchable database of clinical trials in the United States. And http://www.cancer.gov/clinicaltrials has good information about cancer clinical trials, including definitions of the different phases of clinical trials. What phase a trial is in should be an important piece of data for anyone considering a trial..
I'm not sure if this exactly answers your question, but I hope it helps.
Mike
P.S. to micallie: Good luck to you in your next phase of treatment. Please keep us posted on how things go for you.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How should you choose a clinical trial?
Thanks Mike, It is overwhelming. You are right, I want something that will work for our daughter, but no one can tell you if it will because everyone's myeloma is different. There is so much info out there.
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