How do you feel about new treatments and clinical trials?

[MaddieHU]

Are you aware of any new treatments being researched?

How do you feel about participating in clinical trials?

What would prevent you from being involved in a medical research study?

[Meloney SYSF Ambassador]

My experience with participating in clinical trials obviously couldn't have been any better. The fact that new and innovative treatments were even available at the time I was diagnosed was a blessing. If I had been diagnosed a year earlier, I'm fairly certain my outcome would have been quite different. With my type of cancer, it was really a no-brainer to make the decision to enter a trial. There really were few other options.

[lyanne_sys Administrator SYSF]

Clinical trials are a topic that often come up in our monthly patient webinars. It seems the more stories I hear the more complicated these trials seem. Everyone's story is different. For seem it was relentless hours on line searching for their own clinical trials, for some the trails were found by friends or family, they were discovered by taking part in discussions online or through conversation with Kathy and other melanoma patients who have been fortunate to take part in trails. I was left with the feeling that the onus fell on the patient to discover the trials and then bring the conversation to their oncologists? It reminds me again just how important it is to engage in conversation with others in the Melanoma community and to share the knowledge that you have acquired along your journey. Recently Natalia discovered a helpful resource for BMS clinical trials. Here is a link to the post she shared on the Save Your Skin Website and Facebook Page.

saveyourskin.ca/introducing...

If there are any other great resources that you have come across for trials we would love to hear about them.

[ClaudiaM in reply to lyanne_sys]

Lyanne, in my husband's case, we really had to do most of the searching ourselves. We used clinicaltrials.gov/ I also discovered that the drug companies will help you find trials for their own drugs. When I phoned Merck, I was given the names and phone numbers of 3 principal investigators at 3 different clinics. One of them turned out to be at the START clinic in San Antonio, which is where Gordon ended up going. One thing to watch for is that different clinics have different costs associated with them. The Angeles Clinic in Santa Monica covered pretty well all clinical costs. You only paid for travel. At the START clinic, we had to pay for whatever scans were done there, for blood tests, and even something for the investigator's time. No clinics charge for the cost of the drugs, of course. The drug companies pay for that. We went with the START clinic, in spite of the fact that it was a more expensive alternative because from our point of view, the trial was better. Everyone got the experimental drug. No placebo.