What to Expect in Clinical Trial

Janet,  As far as I know the trial site/location has to give the treatment, and that way it controls all the factors.  My husband also goes to Dana Farber (I think your husband still gets treated there too, right), but we spent almost a year traveling to Houston for treatment. My husband did the TILS trial in Houston, and even after that process was over, we flew back to Texas for two more scans  over the summer of 2012, because that was the trial protocol.  After that time period, the trial allowed scans in your own area and the results are sent to Houston.  It really depends on how things are specified in your trial paperwork, which will be reviewed with you and signed.  All our active treatment was done in Houston, during this trial.  Trials can't control other  remote locations, it's likely you will have to go there!!  All the best and enjoy the warm Florida weather!  Valerie (Phil's wife)

Janet,  As far as I know the trial site/location has to give the treatment, and that way it controls all the factors.  My husband also goes to Dana Farber (I think your husband still gets treated there too, right), but we spent almost a year traveling to Houston for treatment. My husband did the TILS trial in Houston, and even after that process was over, we flew back to Texas for two more scans  over the summer of 2012, because that was the trial protocol.  After that time period, the trial allowed scans in your own area and the results are sent to Houston.  It really depends on how things are specified in your trial paperwork, which will be reviewed with you and signed.  All our active treatment was done in Houston, during this trial.  Trials can't control other  remote locations, it's likely you will have to go there!!  All the best and enjoy the warm Florida weather!  Valerie (Phil's wife)

Janet,  As far as I know the trial site/location has to give the treatment, and that way it controls all the factors.  My husband also goes to Dana Farber (I think your husband still gets treated there too, right), but we spent almost a year traveling to Houston for treatment. My husband did the TILS trial in Houston, and even after that process was over, we flew back to Texas for two more scans  over the summer of 2012, because that was the trial protocol.  After that time period, the trial allowed scans in your own area and the results are sent to Houston.  It really depends on how things are specified in your trial paperwork, which will be reviewed with you and signed.  All our active treatment was done in Houston, during this trial.  Trials can't control other  remote locations, it's likely you will have to go there!!  All the best and enjoy the warm Florida weather!  Valerie (Phil's wife)

Hey Janet, 

Many of the answers to your questions will vary depending on the trial and its requirements. However, I can give you my experience. I went back and forth from my home in Chattanooga to Tampa, FL (Moffitt) for 21/2 years…every two weeks for the first 6 months and then every 3 months for 2 years, 3months. I am now going every 6 months for follow-up. My trial required an MRI of the brain and CT of neck, abdomen and chest every 3 months. I was allowed to get those at home one week prior to my Moffitt visits and express mail the results/cd's to Tampa so they would have them before the visit. All infusions and lab work had to be done at Moffitt. My trial also required several built in leukophoresis testing which required travel to Tampa 3 weeks in a row on at least one occasion. Costs with travel can be a big factor as none of my travel expenses were paid by anyone but me! However, there are agencies that can help with that and many hospitals have a place you can stay…Hope House, etc. And, yes, there are lots of scans and paperwork issues that have to be completed before starting any trial. They vary by trial requirements, but are usually pretty doable. The hardest part is getting them all done with way the trial wants them and within the time limits (like within say 28 days of trial start) without something you've already completed running outside the timeframe.

Hang in there! I wish you my best! The entire story of my trial adventure is on my blog if interested.          Yours, celeste

Hey Janet, 

Many of the answers to your questions will vary depending on the trial and its requirements. However, I can give you my experience. I went back and forth from my home in Chattanooga to Tampa, FL (Moffitt) for 21/2 years…every two weeks for the first 6 months and then every 3 months for 2 years, 3months. I am now going every 6 months for follow-up. My trial required an MRI of the brain and CT of neck, abdomen and chest every 3 months. I was allowed to get those at home one week prior to my Moffitt visits and express mail the results/cd's to Tampa so they would have them before the visit. All infusions and lab work had to be done at Moffitt. My trial also required several built in leukophoresis testing which required travel to Tampa 3 weeks in a row on at least one occasion. Costs with travel can be a big factor as none of my travel expenses were paid by anyone but me! However, there are agencies that can help with that and many hospitals have a place you can stay…Hope House, etc. And, yes, there are lots of scans and paperwork issues that have to be completed before starting any trial. They vary by trial requirements, but are usually pretty doable. The hardest part is getting them all done with way the trial wants them and within the time limits (like within say 28 days of trial start) without something you've already completed running outside the timeframe.

Hang in there! I wish you my best! The entire story of my trial adventure is on my blog if interested.          Yours, celeste

Hey Janet, 

Many of the answers to your questions will vary depending on the trial and its requirements. However, I can give you my experience. I went back and forth from my home in Chattanooga to Tampa, FL (Moffitt) for 21/2 years…every two weeks for the first 6 months and then every 3 months for 2 years, 3months. I am now going every 6 months for follow-up. My trial required an MRI of the brain and CT of neck, abdomen and chest every 3 months. I was allowed to get those at home one week prior to my Moffitt visits and express mail the results/cd's to Tampa so they would have them before the visit. All infusions and lab work had to be done at Moffitt. My trial also required several built in leukophoresis testing which required travel to Tampa 3 weeks in a row on at least one occasion. Costs with travel can be a big factor as none of my travel expenses were paid by anyone but me! However, there are agencies that can help with that and many hospitals have a place you can stay…Hope House, etc. And, yes, there are lots of scans and paperwork issues that have to be completed before starting any trial. They vary by trial requirements, but are usually pretty doable. The hardest part is getting them all done with way the trial wants them and within the time limits (like within say 28 days of trial start) without something you've already completed running outside the timeframe.

Hang in there! I wish you my best! The entire story of my trial adventure is on my blog if interested.          Yours, celeste

Janet:

A lot of people have questions about clinical trials, but in melanoma this is often the best way to have access to the most cutting edge treatments.  Trials offer the best supportive care for patients, including more tests and scans to see exactly what is going on.  The disadvantage is around travel, as you have noted. Being in a trail means repeated trips to the center where the trial is taking place, and for some people that is a real challenge.

Some of the standard care can be done locally, but drug administration and scans are almost always done at the host institution. This is a bit different if you are talking about an oral drug, but PD-1 doesn't fall into that category.

The MRF is hosting a Twitter Chat with TJ Sharp, who goes by the handle "Patient 1". He was the first person accrued into a trial and is currently in a different trial. He will talk about, and answer questions about what is like to be involved in a trial. The Chat is this Thursday at 1:00 eastern. You can find more information here:  

http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-clinical-trials

Tim–MRF

Janet:

A lot of people have questions about clinical trials, but in melanoma this is often the best way to have access to the most cutting edge treatments.  Trials offer the best supportive care for patients, including more tests and scans to see exactly what is going on.  The disadvantage is around travel, as you have noted. Being in a trail means repeated trips to the center where the trial is taking place, and for some people that is a real challenge.

Some of the standard care can be done locally, but drug administration and scans are almost always done at the host institution. This is a bit different if you are talking about an oral drug, but PD-1 doesn't fall into that category.

The MRF is hosting a Twitter Chat with TJ Sharp, who goes by the handle "Patient 1". He was the first person accrued into a trial and is currently in a different trial. He will talk about, and answer questions about what is like to be involved in a trial. The Chat is this Thursday at 1:00 eastern. You can find more information here:  

http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-clinical-trials

Tim–MRF

Janet:

A lot of people have questions about clinical trials, but in melanoma this is often the best way to have access to the most cutting edge treatments.  Trials offer the best supportive care for patients, including more tests and scans to see exactly what is going on.  The disadvantage is around travel, as you have noted. Being in a trail means repeated trips to the center where the trial is taking place, and for some people that is a real challenge.

Some of the standard care can be done locally, but drug administration and scans are almost always done at the host institution. This is a bit different if you are talking about an oral drug, but PD-1 doesn't fall into that category.

The MRF is hosting a Twitter Chat with TJ Sharp, who goes by the handle "Patient 1". He was the first person accrued into a trial and is currently in a different trial. He will talk about, and answer questions about what is like to be involved in a trial. The Chat is this Thursday at 1:00 eastern. You can find more information here:  

http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-clinical-trials

Tim–MRF