Needed advice on possible treatments

I am currently on an ipi/nivo combo trial. Personally I think it is the first line that should be tried. 

I am currently on an ipi/nivo combo trial. Personally I think it is the first line that should be tried. 

I am currently on an ipi/nivo combo trial. Personally I think it is the first line that should be tried. 

Hi Patrick,

Lots to think about. I can only offer some info on keytruda. I'm stage 3 and had a Clnd with a large 3 cm inguinal groin node and a smaller pelvic one. Primary was on my thigh. Melanoma in the family. The process of having the keytruda I nfusions is more tiring and time  con suming than I ever thought it would be.  First drive to specialist centre.. then get bloods drawn.. They then have to be seen by doc before appointment and treatment OK given… Assuming no abnormalities. Then keytruda Infusion prepared for me this takes ages as prepped blind off site aspart of trial blinding.allow 3 hours.. Then allow 1. Hr in chair for cannulation, flush, infusion, flush and finish.

Then drive home in rush hour traffic. What sounds fairly simple takes a full day every three weeks.

Side effects seem to be quite variable .. But OK for most. Expect any or all of itchy rash, change of taste /appetite, weight loss, fatigue and maybe anemia and joint pain..and or several others just depends on how you react to it  and  talking to other folk some seem to breeze through it whilst others find it tougher going. I'm only up to infusion 7 and the endocrine  things may crop up later.You are probably rightly concerned with the likely relative response rates of the different regimes..   I was offered this or watch and wait and decided to go for action sooner rather than later but have found the practicalities harder than initially anticipated.

And hey. the unknown primary is favourable for prognosis. means your system may already have found and destroyed melanoma once before and may be persuaded to do so again.

Good luck in your treatment whatever you settle on.

Deb

Hi Patrick,

Lots to think about. I can only offer some info on keytruda. I'm stage 3 and had a Clnd with a large 3 cm inguinal groin node and a smaller pelvic one. Primary was on my thigh. Melanoma in the family. The process of having the keytruda I nfusions is more tiring and time  con suming than I ever thought it would be.  First drive to specialist centre.. then get bloods drawn.. They then have to be seen by doc before appointment and treatment OK given… Assuming no abnormalities. Then keytruda Infusion prepared for me this takes ages as prepped blind off site aspart of trial blinding.allow 3 hours.. Then allow 1. Hr in chair for cannulation, flush, infusion, flush and finish.

Then drive home in rush hour traffic. What sounds fairly simple takes a full day every three weeks.

Side effects seem to be quite variable .. But OK for most. Expect any or all of itchy rash, change of taste /appetite, weight loss, fatigue and maybe anemia and joint pain..and or several others just depends on how you react to it  and  talking to other folk some seem to breeze through it whilst others find it tougher going. I'm only up to infusion 7 and the endocrine  things may crop up later.You are probably rightly concerned with the likely relative response rates of the different regimes..   I was offered this or watch and wait and decided to go for action sooner rather than later but have found the practicalities harder than initially anticipated.

And hey. the unknown primary is favourable for prognosis. means your system may already have found and destroyed melanoma once before and may be persuaded to do so again.

Good luck in your treatment whatever you settle on.

Deb

Hi Patrick,

Lots to think about. I can only offer some info on keytruda. I'm stage 3 and had a Clnd with a large 3 cm inguinal groin node and a smaller pelvic one. Primary was on my thigh. Melanoma in the family. The process of having the keytruda I nfusions is more tiring and time  con suming than I ever thought it would be.  First drive to specialist centre.. then get bloods drawn.. They then have to be seen by doc before appointment and treatment OK given… Assuming no abnormalities. Then keytruda Infusion prepared for me this takes ages as prepped blind off site aspart of trial blinding.allow 3 hours.. Then allow 1. Hr in chair for cannulation, flush, infusion, flush and finish.

Then drive home in rush hour traffic. What sounds fairly simple takes a full day every three weeks.

Side effects seem to be quite variable .. But OK for most. Expect any or all of itchy rash, change of taste /appetite, weight loss, fatigue and maybe anemia and joint pain..and or several others just depends on how you react to it  and  talking to other folk some seem to breeze through it whilst others find it tougher going. I'm only up to infusion 7 and the endocrine  things may crop up later.You are probably rightly concerned with the likely relative response rates of the different regimes..   I was offered this or watch and wait and decided to go for action sooner rather than later but have found the practicalities harder than initially anticipated.

And hey. the unknown primary is favourable for prognosis. means your system may already have found and destroyed melanoma once before and may be persuaded to do so again.

Good luck in your treatment whatever you settle on.

Deb

Hi Patrick,

Sorry for the bad news.  A first reaction would be the aggressive, and with highest (proven) response rate ipi/nivo combo and pay no attention to the side-effects issues.  You may or may not get adverse reactions and to unknown varying degrees.  Deal with it when and if you have to. One interesting thing though is if you do choose to go the clinical trial route, you are in a good position being treatment naive.  I think many more trials are available to you, that many of us are disqualified for because of prior treatments.  But a trial, is a trial, and results cannot be quantified.  Best to you in the battle.

Gary

Hi Patrick,

Sorry for the bad news.  A first reaction would be the aggressive, and with highest (proven) response rate ipi/nivo combo and pay no attention to the side-effects issues.  You may or may not get adverse reactions and to unknown varying degrees.  Deal with it when and if you have to. One interesting thing though is if you do choose to go the clinical trial route, you are in a good position being treatment naive.  I think many more trials are available to you, that many of us are disqualified for because of prior treatments.  But a trial, is a trial, and results cannot be quantified.  Best to you in the battle.

Gary

Hi Patrick,

Sorry for the bad news.  A first reaction would be the aggressive, and with highest (proven) response rate ipi/nivo combo and pay no attention to the side-effects issues.  You may or may not get adverse reactions and to unknown varying degrees.  Deal with it when and if you have to. One interesting thing though is if you do choose to go the clinical trial route, you are in a good position being treatment naive.  I think many more trials are available to you, that many of us are disqualified for because of prior treatments.  But a trial, is a trial, and results cannot be quantified.  Best to you in the battle.

Gary

I went straight to immunotherapy, with no treatment between.

For me it was Ipi, which was the only immunotherapy on offer in the UK at that time outside a trial. However, I believe that that the combination has thad a proven response rate which is much higher than Ipi alone and higher than anti-PD1 (pembrol/nivo) alone.

Yes, I agree with Deb, in my experience, an infusion will end up taking a whole day. As I was only on Ipi, with no maintenance doses, I only had to do it four times. Anti-PD is once every three weeks for, according to the drug companies, forever!

If it is is your lungs, there is no argument that a systemic approach is best.

If you end up on immunotherapy, be alert for side effects and do not hesitate to keep your melanoma team informed of your symptoms. I only had mild side effects, lulling me and my team into a sense of failse sercurity, and then, after my fourth infusion, my anterior pituitary gland was affected. It happened really quickly and by the time I had a blood test the damage was done. I will never recover anterior pituitary gland function.

But that's was a price worth paying. I am about one year NED.

I went straight to immunotherapy, with no treatment between.

For me it was Ipi, which was the only immunotherapy on offer in the UK at that time outside a trial. However, I believe that that the combination has thad a proven response rate which is much higher than Ipi alone and higher than anti-PD1 (pembrol/nivo) alone.

Yes, I agree with Deb, in my experience, an infusion will end up taking a whole day. As I was only on Ipi, with no maintenance doses, I only had to do it four times. Anti-PD is once every three weeks for, according to the drug companies, forever!

If it is is your lungs, there is no argument that a systemic approach is best.

If you end up on immunotherapy, be alert for side effects and do not hesitate to keep your melanoma team informed of your symptoms. I only had mild side effects, lulling me and my team into a sense of failse sercurity, and then, after my fourth infusion, my anterior pituitary gland was affected. It happened really quickly and by the time I had a blood test the damage was done. I will never recover anterior pituitary gland function.

But that's was a price worth paying. I am about one year NED.

I went straight to immunotherapy, with no treatment between.

For me it was Ipi, which was the only immunotherapy on offer in the UK at that time outside a trial. However, I believe that that the combination has thad a proven response rate which is much higher than Ipi alone and higher than anti-PD1 (pembrol/nivo) alone.

Yes, I agree with Deb, in my experience, an infusion will end up taking a whole day. As I was only on Ipi, with no maintenance doses, I only had to do it four times. Anti-PD is once every three weeks for, according to the drug companies, forever!

If it is is your lungs, there is no argument that a systemic approach is best.

If you end up on immunotherapy, be alert for side effects and do not hesitate to keep your melanoma team informed of your symptoms. I only had mild side effects, lulling me and my team into a sense of failse sercurity, and then, after my fourth infusion, my anterior pituitary gland was affected. It happened really quickly and by the time I had a blood test the damage was done. I will never recover anterior pituitary gland function.

But that's was a price worth paying. I am about one year NED.