Rundown of WHAT ELSE to TRY!

Very interesting!  Thank you for sharing!

Terrie

Very interesting!  Thank you for sharing!

Terrie

Very interesting!  Thank you for sharing!

Terrie

Thanks for the link, Jerry. I strongly suggest that we begin A VIGOROUS EMAIL AND SOCIAL MEDIA  CAMPAIGN to help connect patients with appropriate clinical trials.

For those of you who have not yet seen it, this is a 20-minute talk given by Dr. Omid Hamid of The Angeles Clinic last July describing in general terms all of the myriad new clinical trials available to melanoma patients. The main point being that researchers are now beginning to combine 2 or more treatments at once– including combining FDA approved treatments for other cancers together with melanoma-specific treatments. According to Dr. Hamid, between all of the new melanoma drugs in the development pipeline and all the possible combinations of 2 or more treatments, there are beginning to be more clinical trials than you can shake a stick at. 

To me, this is a "good news/bad news" scenario. Of course it's great that researchers and presumably pharmaceutical companies are beginning to pool their resources to come up with ever better treatments for melanoma. The bad news is that how are we, the patients and caregivers, supposed to find these clinical trials and identify the one(s) that we qualify for? Even more importantly, how are our oncologists supposed to find these trials for us? Dr. Hamid said during his talk that he used to spend hours combing the ClinicalTrials.gov web site looking for possible clinical trials for his patients, usually without success. How many practicing physicians have the time to do that?

I think that the time has come for the melanoma community to develop a better method to match clinical trials with potential participants. It couldn't be that difficult to create an online search function where patients or physicians can enter a lot of information– melanoma stage, BRAF status, prior treatments, CNS disease status, georgraphic area, etc. and get a list of the available clinical trials. There should also be a function where you get an email or text message when a trial matching your characteristics opens in your geographic area.

The ClilnicalTrials.gov web site makes a start at such filtering, but its not very good. You still have to read all of the inclusions and exclusions and trial locations to determine if you are elegible. And half the time you are left confused as to whether or not you really are elegible or frustrated because there is no way you could get to a trial of interest. And, again, your oncologist has to go through the same thing on your behalf. 

Now that we have entered this "Brave New World" of combinatorial trials, we really need a better clinical trial search engine. Not only would this help patients and their doctors, but it would also help the pharmaceutical companies fill their trial slots faster and get their results sooner. Another important benefit. 

I suggest that every one of us send an email to Dr. Hamid, to Tim Turnham (Executive Director of the MRF) and to Catherine Poole (Founder of the Melanoma International Foundation) encouraging them to work together to create a truly useful seach engine for melanoma clinical trials. This would be a blessing and a benefit to everyone involved in the clinical trials process. Their email addresses are Dr. Omid Hamid: ohamid@theangelesclinic.org  Tim Turnham: tturnham@melanoma.org Catherine Poole: cpoole@melanomainternational.org Spread the word on other forums, on your Facebook page, your blog, or whereever you can think of asking others to petition for a really good clinical trial search engine.

We often wring our hands and wonder what we could possibly do to help ourselves and our loved ones fight melanoma. Well, here we are– this is something really important that we can do. Let's all take 5 minutes to send an email to these movers and shakers for the benefit of all. When you do, please post here that you have done it so that we can build up grassroots support and keep this ball rolling.

Thanks for the link, Jerry. I strongly suggest that we begin A VIGOROUS EMAIL AND SOCIAL MEDIA  CAMPAIGN to help connect patients with appropriate clinical trials.

For those of you who have not yet seen it, this is a 20-minute talk given by Dr. Omid Hamid of The Angeles Clinic last July describing in general terms all of the myriad new clinical trials available to melanoma patients. The main point being that researchers are now beginning to combine 2 or more treatments at once– including combining FDA approved treatments for other cancers together with melanoma-specific treatments. According to Dr. Hamid, between all of the new melanoma drugs in the development pipeline and all the possible combinations of 2 or more treatments, there are beginning to be more clinical trials than you can shake a stick at. 

To me, this is a "good news/bad news" scenario. Of course it's great that researchers and presumably pharmaceutical companies are beginning to pool their resources to come up with ever better treatments for melanoma. The bad news is that how are we, the patients and caregivers, supposed to find these clinical trials and identify the one(s) that we qualify for? Even more importantly, how are our oncologists supposed to find these trials for us? Dr. Hamid said during his talk that he used to spend hours combing the ClinicalTrials.gov web site looking for possible clinical trials for his patients, usually without success. How many practicing physicians have the time to do that?

I think that the time has come for the melanoma community to develop a better method to match clinical trials with potential participants. It couldn't be that difficult to create an online search function where patients or physicians can enter a lot of information– melanoma stage, BRAF status, prior treatments, CNS disease status, georgraphic area, etc. and get a list of the available clinical trials. There should also be a function where you get an email or text message when a trial matching your characteristics opens in your geographic area.

The ClilnicalTrials.gov web site makes a start at such filtering, but its not very good. You still have to read all of the inclusions and exclusions and trial locations to determine if you are elegible. And half the time you are left confused as to whether or not you really are elegible or frustrated because there is no way you could get to a trial of interest. And, again, your oncologist has to go through the same thing on your behalf. 

Now that we have entered this "Brave New World" of combinatorial trials, we really need a better clinical trial search engine. Not only would this help patients and their doctors, but it would also help the pharmaceutical companies fill their trial slots faster and get their results sooner. Another important benefit. 

I suggest that every one of us send an email to Dr. Hamid, to Tim Turnham (Executive Director of the MRF) and to Catherine Poole (Founder of the Melanoma International Foundation) encouraging them to work together to create a truly useful seach engine for melanoma clinical trials. This would be a blessing and a benefit to everyone involved in the clinical trials process. Their email addresses are Dr. Omid Hamid: ohamid@theangelesclinic.org  Tim Turnham: tturnham@melanoma.org Catherine Poole: cpoole@melanomainternational.org Spread the word on other forums, on your Facebook page, your blog, or whereever you can think of asking others to petition for a really good clinical trial search engine.

We often wring our hands and wonder what we could possibly do to help ourselves and our loved ones fight melanoma. Well, here we are– this is something really important that we can do. Let's all take 5 minutes to send an email to these movers and shakers for the benefit of all. When you do, please post here that you have done it so that we can build up grassroots support and keep this ball rolling.

Thanks for the link, Jerry. I strongly suggest that we begin A VIGOROUS EMAIL AND SOCIAL MEDIA  CAMPAIGN to help connect patients with appropriate clinical trials.

For those of you who have not yet seen it, this is a 20-minute talk given by Dr. Omid Hamid of The Angeles Clinic last July describing in general terms all of the myriad new clinical trials available to melanoma patients. The main point being that researchers are now beginning to combine 2 or more treatments at once– including combining FDA approved treatments for other cancers together with melanoma-specific treatments. According to Dr. Hamid, between all of the new melanoma drugs in the development pipeline and all the possible combinations of 2 or more treatments, there are beginning to be more clinical trials than you can shake a stick at. 

To me, this is a "good news/bad news" scenario. Of course it's great that researchers and presumably pharmaceutical companies are beginning to pool their resources to come up with ever better treatments for melanoma. The bad news is that how are we, the patients and caregivers, supposed to find these clinical trials and identify the one(s) that we qualify for? Even more importantly, how are our oncologists supposed to find these trials for us? Dr. Hamid said during his talk that he used to spend hours combing the ClinicalTrials.gov web site looking for possible clinical trials for his patients, usually without success. How many practicing physicians have the time to do that?

I think that the time has come for the melanoma community to develop a better method to match clinical trials with potential participants. It couldn't be that difficult to create an online search function where patients or physicians can enter a lot of information– melanoma stage, BRAF status, prior treatments, CNS disease status, georgraphic area, etc. and get a list of the available clinical trials. There should also be a function where you get an email or text message when a trial matching your characteristics opens in your geographic area.

The ClilnicalTrials.gov web site makes a start at such filtering, but its not very good. You still have to read all of the inclusions and exclusions and trial locations to determine if you are elegible. And half the time you are left confused as to whether or not you really are elegible or frustrated because there is no way you could get to a trial of interest. And, again, your oncologist has to go through the same thing on your behalf. 

Now that we have entered this "Brave New World" of combinatorial trials, we really need a better clinical trial search engine. Not only would this help patients and their doctors, but it would also help the pharmaceutical companies fill their trial slots faster and get their results sooner. Another important benefit. 

I suggest that every one of us send an email to Dr. Hamid, to Tim Turnham (Executive Director of the MRF) and to Catherine Poole (Founder of the Melanoma International Foundation) encouraging them to work together to create a truly useful seach engine for melanoma clinical trials. This would be a blessing and a benefit to everyone involved in the clinical trials process. Their email addresses are Dr. Omid Hamid: ohamid@theangelesclinic.org  Tim Turnham: tturnham@melanoma.org Catherine Poole: cpoole@melanomainternational.org Spread the word on other forums, on your Facebook page, your blog, or whereever you can think of asking others to petition for a really good clinical trial search engine.

We often wring our hands and wonder what we could possibly do to help ourselves and our loved ones fight melanoma. Well, here we are– this is something really important that we can do. Let's all take 5 minutes to send an email to these movers and shakers for the benefit of all. When you do, please post here that you have done it so that we can build up grassroots support and keep this ball rolling.

Thanks for posting this. We sure have come a LONG way over the past 2-3 years with regard to melanoma and other cancers.

Thanks for posting this. We sure have come a LONG way over the past 2-3 years with regard to melanoma and other cancers.

Thanks for posting this. We sure have come a LONG way over the past 2-3 years with regard to melanoma and other cancers.