Thoughts on PD1 for stage 3?

If there is only this opition, i say go for it, either one will hopefully work… I personally don't believe in watch and wait, because you never know if there are some microscopic mets lurking…

Many progress from III to IV, i believe cause some mel was there but undetectable at time…

if there were all options in the world, i would choose keytruda, many patients don't experience any sideffects (or are very managable)…

good luck with whatever you choose!!

If there is only this opition, i say go for it, either one will hopefully work… I personally don't believe in watch and wait, because you never know if there are some microscopic mets lurking…

Many progress from III to IV, i believe cause some mel was there but undetectable at time…

if there were all options in the world, i would choose keytruda, many patients don't experience any sideffects (or are very managable)…

good luck with whatever you choose!!

If there is only this opition, i say go for it, either one will hopefully work… I personally don't believe in watch and wait, because you never know if there are some microscopic mets lurking…

Many progress from III to IV, i believe cause some mel was there but undetectable at time…

if there were all options in the world, i would choose keytruda, many patients don't experience any sideffects (or are very managable)…

good luck with whatever you choose!!

Happened to post these two reports out of ASCO today regarding ipi/nivo/pembro as adjuvant:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

Hope that helps.  I wish you well.  celeste

Happened to post these two reports out of ASCO today regarding ipi/nivo/pembro as adjuvant:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

Hope that helps.  I wish you well.  celeste

Happened to post these two reports out of ASCO today regarding ipi/nivo/pembro as adjuvant:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-two-adjuvant-studies-for.html

Hope that helps.  I wish you well.  celeste

If I were a newly diagnosed Stage 3 patient and the facility where I was going offered this trial, I would consider it. 

I don't believe there is any data on how well Keytruda works on Stage 3 patients. That's what this trial will determine. But, Stage 4 patients have been doing quite well on it. Stage 4 patients have also been doing well on Yervoy and so have Stage 3 patients.

Keytruda is not without side effects but overall I believe it's better tolerated that Yervoy. One question to ask your doctor is what the Yervoy dosage for this trial is. Last I heard was that the dosage for Stage 3 patients was 10 mg/kg whereas for Stage 4 patients it is 3 mg/kg. The higher dosage will run you a higher risk of side effects. Never quite understood the reasoning behind that since Stage 3 is not considered "advanced melanoma".

If I were a newly diagnosed Stage 3 patient and the facility where I was going offered this trial, I would consider it. 

I don't believe there is any data on how well Keytruda works on Stage 3 patients. That's what this trial will determine. But, Stage 4 patients have been doing quite well on it. Stage 4 patients have also been doing well on Yervoy and so have Stage 3 patients.

Keytruda is not without side effects but overall I believe it's better tolerated that Yervoy. One question to ask your doctor is what the Yervoy dosage for this trial is. Last I heard was that the dosage for Stage 3 patients was 10 mg/kg whereas for Stage 4 patients it is 3 mg/kg. The higher dosage will run you a higher risk of side effects. Never quite understood the reasoning behind that since Stage 3 is not considered "advanced melanoma".

If I were a newly diagnosed Stage 3 patient and the facility where I was going offered this trial, I would consider it. 

I don't believe there is any data on how well Keytruda works on Stage 3 patients. That's what this trial will determine. But, Stage 4 patients have been doing quite well on it. Stage 4 patients have also been doing well on Yervoy and so have Stage 3 patients.

Keytruda is not without side effects but overall I believe it's better tolerated that Yervoy. One question to ask your doctor is what the Yervoy dosage for this trial is. Last I heard was that the dosage for Stage 3 patients was 10 mg/kg whereas for Stage 4 patients it is 3 mg/kg. The higher dosage will run you a higher risk of side effects. Never quite understood the reasoning behind that since Stage 3 is not considered "advanced melanoma".

Have just started this trial. Was hoping for pembro as I think will be more effective and less side effects but was put on the ipi arm.

I think its a good trial to join althiugh am not looking forward to the side effects. it may help us find out which is the best approach. Hope goes well for both of us, plus for all the others on this forum.w

Have just started this trial. Was hoping for pembro as I think will be more effective and less side effects but was put on the ipi arm.

I think its a good trial to join althiugh am not looking forward to the side effects. it may help us find out which is the best approach. Hope goes well for both of us, plus for all the others on this forum.w

Have just started this trial. Was hoping for pembro as I think will be more effective and less side effects but was put on the ipi arm.

I think its a good trial to join althiugh am not looking forward to the side effects. it may help us find out which is the best approach. Hope goes well for both of us, plus for all the others on this forum.w

I am on a trial for stage 3 melanoma with a high risk of progression.

My trial is Keytruda aka pembrolizumab V placebo. Due to side effects I believe I've got the drug rather than the placebo. 

In making your decision re treatment, I would weigh in how agressive your melanoma has been. I went from 1a to 3c in about 18 months- having a mole on my leg removed and later developing palpable lymph nodes in my groin.  Also, regardless of which leg of the trial you are on- you are likely to recieve a higher degree of monitoring and support. Any side effects you have are likely to be within the research teams previous experience- and they are likely to refer to other specialist so they can determine the nature of the problem- and the appropriate treatment – as part of the trial protocol. The great thing about trials is that you are usually being treated in a specialistcentre and that alone translates to a better outcome on average- as their skill and experience translates to better quality clinical decision making.

If your alternative to the trial is watchful waiting- you can easily revert to that and drop out of the trial, if you find any side effects intolerable, alternatively the trials team would call a halt if they thought continuing with Yervoy was not in your best interests due to extreme reactions.

Mentally, I have found it very helpful to feel I am taking action to beat melanoma- and have a strongly held belief that it ought to be easier to get my immune system to attack rogue cells before they establish themselves as a tumour. It might be wishful thinking as the effectiveness of keytruda at this stage has to be determined- but it seems to make sense to me.

What does the trial protocol say if you progress on Yervoy or have to stop due to side effects ? In my trial if progression occurs then they look to see if you were on the active arm or not- and if on the placebo can the access Keytruda if thought beneficial by the team.

I've also read some reports where trials are halted early if it becomes very clear that one arm of the trial is very much superior than the other for patients.By participating in trials we contribute to better treatment for those that tread this path a few paces behind us.. and benefit from the experience of those who are walking the path ahead of us.

I believe I am on infusion 3 of Keytruda and have had problems with very itchy rash, cellulius infection, general fatigue, worsening of arthritis and headaches which were worst around infusion 2. The silver lining is that I have lost weight due to reduced appetite and altered sense of taste. In fact sometimes it feels like early stages of pregnancy , with slight nausea to boot.  In spite of this, I still think the potential gains from immunotherapy are worth putting up with the side effects for… and encouragingly most folk seem to tolerate this drug better than I do…

Good luck with whatever decision you settle on…….

I am on a trial for stage 3 melanoma with a high risk of progression.

My trial is Keytruda aka pembrolizumab V placebo. Due to side effects I believe I've got the drug rather than the placebo. 

In making your decision re treatment, I would weigh in how agressive your melanoma has been. I went from 1a to 3c in about 18 months- having a mole on my leg removed and later developing palpable lymph nodes in my groin.  Also, regardless of which leg of the trial you are on- you are likely to recieve a higher degree of monitoring and support. Any side effects you have are likely to be within the research teams previous experience- and they are likely to refer to other specialist so they can determine the nature of the problem- and the appropriate treatment – as part of the trial protocol. The great thing about trials is that you are usually being treated in a specialistcentre and that alone translates to a better outcome on average- as their skill and experience translates to better quality clinical decision making.

If your alternative to the trial is watchful waiting- you can easily revert to that and drop out of the trial, if you find any side effects intolerable, alternatively the trials team would call a halt if they thought continuing with Yervoy was not in your best interests due to extreme reactions.

Mentally, I have found it very helpful to feel I am taking action to beat melanoma- and have a strongly held belief that it ought to be easier to get my immune system to attack rogue cells before they establish themselves as a tumour. It might be wishful thinking as the effectiveness of keytruda at this stage has to be determined- but it seems to make sense to me.

What does the trial protocol say if you progress on Yervoy or have to stop due to side effects ? In my trial if progression occurs then they look to see if you were on the active arm or not- and if on the placebo can the access Keytruda if thought beneficial by the team.

I've also read some reports where trials are halted early if it becomes very clear that one arm of the trial is very much superior than the other for patients.By participating in trials we contribute to better treatment for those that tread this path a few paces behind us.. and benefit from the experience of those who are walking the path ahead of us.

I believe I am on infusion 3 of Keytruda and have had problems with very itchy rash, cellulius infection, general fatigue, worsening of arthritis and headaches which were worst around infusion 2. The silver lining is that I have lost weight due to reduced appetite and altered sense of taste. In fact sometimes it feels like early stages of pregnancy , with slight nausea to boot.  In spite of this, I still think the potential gains from immunotherapy are worth putting up with the side effects for… and encouragingly most folk seem to tolerate this drug better than I do…

Good luck with whatever decision you settle on…….

I am on a trial for stage 3 melanoma with a high risk of progression.

My trial is Keytruda aka pembrolizumab V placebo. Due to side effects I believe I've got the drug rather than the placebo. 

In making your decision re treatment, I would weigh in how agressive your melanoma has been. I went from 1a to 3c in about 18 months- having a mole on my leg removed and later developing palpable lymph nodes in my groin.  Also, regardless of which leg of the trial you are on- you are likely to recieve a higher degree of monitoring and support. Any side effects you have are likely to be within the research teams previous experience- and they are likely to refer to other specialist so they can determine the nature of the problem- and the appropriate treatment – as part of the trial protocol. The great thing about trials is that you are usually being treated in a specialistcentre and that alone translates to a better outcome on average- as their skill and experience translates to better quality clinical decision making.

If your alternative to the trial is watchful waiting- you can easily revert to that and drop out of the trial, if you find any side effects intolerable, alternatively the trials team would call a halt if they thought continuing with Yervoy was not in your best interests due to extreme reactions.

Mentally, I have found it very helpful to feel I am taking action to beat melanoma- and have a strongly held belief that it ought to be easier to get my immune system to attack rogue cells before they establish themselves as a tumour. It might be wishful thinking as the effectiveness of keytruda at this stage has to be determined- but it seems to make sense to me.

What does the trial protocol say if you progress on Yervoy or have to stop due to side effects ? In my trial if progression occurs then they look to see if you were on the active arm or not- and if on the placebo can the access Keytruda if thought beneficial by the team.

I've also read some reports where trials are halted early if it becomes very clear that one arm of the trial is very much superior than the other for patients.By participating in trials we contribute to better treatment for those that tread this path a few paces behind us.. and benefit from the experience of those who are walking the path ahead of us.

I believe I am on infusion 3 of Keytruda and have had problems with very itchy rash, cellulius infection, general fatigue, worsening of arthritis and headaches which were worst around infusion 2. The silver lining is that I have lost weight due to reduced appetite and altered sense of taste. In fact sometimes it feels like early stages of pregnancy , with slight nausea to boot.  In spite of this, I still think the potential gains from immunotherapy are worth putting up with the side effects for… and encouragingly most folk seem to tolerate this drug better than I do…

Good luck with whatever decision you settle on…….

I am a Stage IIIB on CA209-238 Double blind IPPI vs NIVO. Currently at week 40 of 50 weeks.  I currently and have been NED for one year now while on the trial so yes I think it is worth it.  I have had very minor side effects but none for about the past 6 month. I do have some minor short term memory loss.  All my blood work is within normal ranges and have always have been.  CT scans every 12 weeks no tumors in the body at all. I am pretty sure I am getting the NIVO every other week because I do feel week after I get the dose and tired for a full day after. 

My impression of the treatment is it is best to get these drugs while you are very healthy and your body can handle it. With a 50/50 chance of the cancer to return in my experience going on the trial/drugs for 50 weeks has been worth the time and effort not to mention I see the doctor every other week and have CT scans every 12 weeks paid by the trial.  You would not get that off trial from your insurance.  I have 10 more weeks to go and then 3 years of watching (scans every 6 month) the trial will cover the costs for. I can also say I have not been sick within the past 2 years with either a cold or flu so maybe my immune system is in over drive. 

Tom

I am a Stage IIIB on CA209-238 Double blind IPPI vs NIVO. Currently at week 40 of 50 weeks.  I currently and have been NED for one year now while on the trial so yes I think it is worth it.  I have had very minor side effects but none for about the past 6 month. I do have some minor short term memory loss.  All my blood work is within normal ranges and have always have been.  CT scans every 12 weeks no tumors in the body at all. I am pretty sure I am getting the NIVO every other week because I do feel week after I get the dose and tired for a full day after. 

My impression of the treatment is it is best to get these drugs while you are very healthy and your body can handle it. With a 50/50 chance of the cancer to return in my experience going on the trial/drugs for 50 weeks has been worth the time and effort not to mention I see the doctor every other week and have CT scans every 12 weeks paid by the trial.  You would not get that off trial from your insurance.  I have 10 more weeks to go and then 3 years of watching (scans every 6 month) the trial will cover the costs for. I can also say I have not been sick within the past 2 years with either a cold or flu so maybe my immune system is in over drive. 

Tom

I am a Stage IIIB on CA209-238 Double blind IPPI vs NIVO. Currently at week 40 of 50 weeks.  I currently and have been NED for one year now while on the trial so yes I think it is worth it.  I have had very minor side effects but none for about the past 6 month. I do have some minor short term memory loss.  All my blood work is within normal ranges and have always have been.  CT scans every 12 weeks no tumors in the body at all. I am pretty sure I am getting the NIVO every other week because I do feel week after I get the dose and tired for a full day after. 

My impression of the treatment is it is best to get these drugs while you are very healthy and your body can handle it. With a 50/50 chance of the cancer to return in my experience going on the trial/drugs for 50 weeks has been worth the time and effort not to mention I see the doctor every other week and have CT scans every 12 weeks paid by the trial.  You would not get that off trial from your insurance.  I have 10 more weeks to go and then 3 years of watching (scans every 6 month) the trial will cover the costs for. I can also say I have not been sick within the past 2 years with either a cold or flu so maybe my immune system is in over drive. 

Tom