Opinions on Trials for Stage IIIa

I would try and work out the different options in your shoes and work out the likely success rate of the offered treatments, the time involved in getting the treatment and the likely side effect profile… I know they are averages and you are unique…

There is probably a clock ticking – ie trial to start not later than 13 weeks from surgery- but before being accepted you are likely to have to jump a few hoops.

In my case -stage IIIb- with pembrolizumab v placebo it was- Consent for pre trial investigations- can't be given on the day of discussion- need to have 24 hr cool off time – and consent signed in front of doctor.

This then gave them chance to test tumour tissue for pd1 expression- just needed a result as positive and negative expressers equally welcome ( My tissue sent to labs in the states from the UK) then needed consent to be entered in main trial- yup- another 2 drives to Manchester with 24 hrs inbetween- then they needed to establish NED status as original CT scan too out of date- in my case this resulted in further ultrasound investigations – another 2 weeks after the CT scan- then I went down with chest infection- so another delay before starting trial- so in the end started trial 2days before being timed out ! 

They would also want any radiotherapy to have been finished prior to starting trial. .. Think what I am trying to say is that time can slip by much faster than you would anticipate.

Also ,in the UK it seems like the key institutions run trials linked to one of the main pharma co involved in the market… you might need to work out who is involved in what trial where ? and don't rule out non trial treatment given the rapid approvals given for some of the latest drugs- you need to work out what is available to you – watch out as some of the approvals were only fall 2015….but this is up to date ….. https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

It looks like a huge list to look at- but I'm really glad I was a bit obsessive and comfortable that I was making an informed choice in spite of the fact that the side effects have been rather tougher than anticipated. Also, depending on your insurance status a trial might be good as they seem to cover the cost of blood tests and scans as well as the meds.

Ran this search

 https://clinicaltrials.gov/ct2/results?term=melanoma+stage+III&recr=Recruiting&type=&rslt=&age_v=&age=1&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3AWA&cntry1=NA%3AUS&state2=NA%3AUS%3AVA&cntry2=NA%3AUS&state3=NA%3AUS%3AMD&cntry3=NA%3AUS&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

But don't get too excited as a number of the trials specify which subsection of stage III you need to be at..so some of those are ruled out anyway.

BUT if it helps the trials may meet travel costs  but not sure how generous this is if it involves flights..but you might want to widen the search …

BTW this is my trial https://clinicaltrials.gov/ct2/show/study/NCT02362594?term=PD1+melanoma+pembrolizumab&rank=7&show_locs=Y#locn

Anyway , as usual would stress youneed specialists in Melanoma to get the best advice from your medics and thank goodness treatments are coming along the pipeline.

Best of wishes for the future,

Deb

I would try and work out the different options in your shoes and work out the likely success rate of the offered treatments, the time involved in getting the treatment and the likely side effect profile… I know they are averages and you are unique…

There is probably a clock ticking – ie trial to start not later than 13 weeks from surgery- but before being accepted you are likely to have to jump a few hoops.

In my case -stage IIIb- with pembrolizumab v placebo it was- Consent for pre trial investigations- can't be given on the day of discussion- need to have 24 hr cool off time – and consent signed in front of doctor.

This then gave them chance to test tumour tissue for pd1 expression- just needed a result as positive and negative expressers equally welcome ( My tissue sent to labs in the states from the UK) then needed consent to be entered in main trial- yup- another 2 drives to Manchester with 24 hrs inbetween- then they needed to establish NED status as original CT scan too out of date- in my case this resulted in further ultrasound investigations – another 2 weeks after the CT scan- then I went down with chest infection- so another delay before starting trial- so in the end started trial 2days before being timed out ! 

They would also want any radiotherapy to have been finished prior to starting trial. .. Think what I am trying to say is that time can slip by much faster than you would anticipate.

Also ,in the UK it seems like the key institutions run trials linked to one of the main pharma co involved in the market… you might need to work out who is involved in what trial where ? and don't rule out non trial treatment given the rapid approvals given for some of the latest drugs- you need to work out what is available to you – watch out as some of the approvals were only fall 2015….but this is up to date ….. https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

It looks like a huge list to look at- but I'm really glad I was a bit obsessive and comfortable that I was making an informed choice in spite of the fact that the side effects have been rather tougher than anticipated. Also, depending on your insurance status a trial might be good as they seem to cover the cost of blood tests and scans as well as the meds.

Ran this search

 https://clinicaltrials.gov/ct2/results?term=melanoma+stage+III&recr=Recruiting&type=&rslt=&age_v=&age=1&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3AWA&cntry1=NA%3AUS&state2=NA%3AUS%3AVA&cntry2=NA%3AUS&state3=NA%3AUS%3AMD&cntry3=NA%3AUS&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

But don't get too excited as a number of the trials specify which subsection of stage III you need to be at..so some of those are ruled out anyway.

BUT if it helps the trials may meet travel costs  but not sure how generous this is if it involves flights..but you might want to widen the search …

BTW this is my trial https://clinicaltrials.gov/ct2/show/study/NCT02362594?term=PD1+melanoma+pembrolizumab&rank=7&show_locs=Y#locn

Anyway , as usual would stress youneed specialists in Melanoma to get the best advice from your medics and thank goodness treatments are coming along the pipeline.

Best of wishes for the future,

Deb

I would try and work out the different options in your shoes and work out the likely success rate of the offered treatments, the time involved in getting the treatment and the likely side effect profile… I know they are averages and you are unique…

There is probably a clock ticking – ie trial to start not later than 13 weeks from surgery- but before being accepted you are likely to have to jump a few hoops.

In my case -stage IIIb- with pembrolizumab v placebo it was- Consent for pre trial investigations- can't be given on the day of discussion- need to have 24 hr cool off time – and consent signed in front of doctor.

This then gave them chance to test tumour tissue for pd1 expression- just needed a result as positive and negative expressers equally welcome ( My tissue sent to labs in the states from the UK) then needed consent to be entered in main trial- yup- another 2 drives to Manchester with 24 hrs inbetween- then they needed to establish NED status as original CT scan too out of date- in my case this resulted in further ultrasound investigations – another 2 weeks after the CT scan- then I went down with chest infection- so another delay before starting trial- so in the end started trial 2days before being timed out ! 

They would also want any radiotherapy to have been finished prior to starting trial. .. Think what I am trying to say is that time can slip by much faster than you would anticipate.

Also ,in the UK it seems like the key institutions run trials linked to one of the main pharma co involved in the market… you might need to work out who is involved in what trial where ? and don't rule out non trial treatment given the rapid approvals given for some of the latest drugs- you need to work out what is available to you – watch out as some of the approvals were only fall 2015….but this is up to date ….. https://www.melanoma.org/sites/default/files/StageIIIPiece.pdf

It looks like a huge list to look at- but I'm really glad I was a bit obsessive and comfortable that I was making an informed choice in spite of the fact that the side effects have been rather tougher than anticipated. Also, depending on your insurance status a trial might be good as they seem to cover the cost of blood tests and scans as well as the meds.

Ran this search

 https://clinicaltrials.gov/ct2/results?term=melanoma+stage+III&recr=Recruiting&type=&rslt=&age_v=&age=1&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3AWA&cntry1=NA%3AUS&state2=NA%3AUS%3AVA&cntry2=NA%3AUS&state3=NA%3AUS%3AMD&cntry3=NA%3AUS&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

But don't get too excited as a number of the trials specify which subsection of stage III you need to be at..so some of those are ruled out anyway.

BUT if it helps the trials may meet travel costs  but not sure how generous this is if it involves flights..but you might want to widen the search …

BTW this is my trial https://clinicaltrials.gov/ct2/show/study/NCT02362594?term=PD1+melanoma+pembrolizumab&rank=7&show_locs=Y#locn

Anyway , as usual would stress youneed specialists in Melanoma to get the best advice from your medics and thank goodness treatments are coming along the pipeline.

Best of wishes for the future,

Deb

I would certainly consider one of the trials using anti-PD1 drugs, either nivolumab (Opdivo) or pembrolizumab (Keytruda). I have not checked recently to see what trials are open, but a lot of leading melanoma doctors are anticipating that these studies will be positive.

in DC, Dr. Mike Atkins at Georgetown is most likely to have trials open. In MD you would go to Hopkins, which has a good immunotherapy program. In VA you would have a few options depending on where you are, but the program closer in to the DC area is newer and may not have as many trials open right now.

Tim–MRF

I would certainly consider one of the trials using anti-PD1 drugs, either nivolumab (Opdivo) or pembrolizumab (Keytruda). I have not checked recently to see what trials are open, but a lot of leading melanoma doctors are anticipating that these studies will be positive.

in DC, Dr. Mike Atkins at Georgetown is most likely to have trials open. In MD you would go to Hopkins, which has a good immunotherapy program. In VA you would have a few options depending on where you are, but the program closer in to the DC area is newer and may not have as many trials open right now.

Tim–MRF

I would certainly consider one of the trials using anti-PD1 drugs, either nivolumab (Opdivo) or pembrolizumab (Keytruda). I have not checked recently to see what trials are open, but a lot of leading melanoma doctors are anticipating that these studies will be positive.

in DC, Dr. Mike Atkins at Georgetown is most likely to have trials open. In MD you would go to Hopkins, which has a good immunotherapy program. In VA you would have a few options depending on where you are, but the program closer in to the DC area is newer and may not have as many trials open right now.

Tim–MRF

Hi Terisaly T,  just to add a little to what Tim said above, I have listen to a few presentation from Dr.Weber(Melanoma specialist) and he has stated a couple of times that there have been many Vaccine trials in Melanoma and none have worked over the years. Immunotherapy and targeted therapy have been the two main areas of advancement with solid results over the last few years. Best Wishes!!!Ed

Hi Terisaly T,  just to add a little to what Tim said above, I have listen to a few presentation from Dr.Weber(Melanoma specialist) and he has stated a couple of times that there have been many Vaccine trials in Melanoma and none have worked over the years. Immunotherapy and targeted therapy have been the two main areas of advancement with solid results over the last few years. Best Wishes!!!Ed

Hi Terisaly T,  just to add a little to what Tim said above, I have listen to a few presentation from Dr.Weber(Melanoma specialist) and he has stated a couple of times that there have been many Vaccine trials in Melanoma and none have worked over the years. Immunotherapy and targeted therapy have been the two main areas of advancement with solid results over the last few years. Best Wishes!!!Ed

dear Terisaly

I am seeing Dr. GIbney at Georgetown (who works with Dr Atkins)

He and his team (Bridget Kellie) are friendly knowledgable helpful and proactive, and should be aware of clinical trials for stage iii.

you can also get second opinions from doctors at hopkins too

good luck

dear Terisaly

I am seeing Dr. GIbney at Georgetown (who works with Dr Atkins)

He and his team (Bridget Kellie) are friendly knowledgable helpful and proactive, and should be aware of clinical trials for stage iii.

you can also get second opinions from doctors at hopkins too

good luck

dear Terisaly

I am seeing Dr. GIbney at Georgetown (who works with Dr Atkins)

He and his team (Bridget Kellie) are friendly knowledgable helpful and proactive, and should be aware of clinical trials for stage iii.

you can also get second opinions from doctors at hopkins too

good luck