High dose ipi

Hi Vicki,

Don't let fear of side-effects get in the way of treatment options.  I'm one of many who had very, very few side-effects from ipi.  That said, many others have suffered immensely.  There is no way to know how you will react so I always say go for the treatment and deal with adverse reactions if you need to.  Note that adverse reactions also correlate with response, so it appears no pain, no gain may be a factor.  Whether ipi for you now is the right choice may be debatable.  Newest research says going with anti PD-1 (pembro or nivo) prior to ipi has shown better results.  The "standard of care" has been ipi first, probably due to its early approval for Stage 3, so many doctors are still going that route on autopilot.  Ask more questions, and research regarding your best next step.

Gary

Hi Vicki,

Don't let fear of side-effects get in the way of treatment options.  I'm one of many who had very, very few side-effects from ipi.  That said, many others have suffered immensely.  There is no way to know how you will react so I always say go for the treatment and deal with adverse reactions if you need to.  Note that adverse reactions also correlate with response, so it appears no pain, no gain may be a factor.  Whether ipi for you now is the right choice may be debatable.  Newest research says going with anti PD-1 (pembro or nivo) prior to ipi has shown better results.  The "standard of care" has been ipi first, probably due to its early approval for Stage 3, so many doctors are still going that route on autopilot.  Ask more questions, and research regarding your best next step.

Gary

Hi Vicki,

Don't let fear of side-effects get in the way of treatment options.  I'm one of many who had very, very few side-effects from ipi.  That said, many others have suffered immensely.  There is no way to know how you will react so I always say go for the treatment and deal with adverse reactions if you need to.  Note that adverse reactions also correlate with response, so it appears no pain, no gain may be a factor.  Whether ipi for you now is the right choice may be debatable.  Newest research says going with anti PD-1 (pembro or nivo) prior to ipi has shown better results.  The "standard of care" has been ipi first, probably due to its early approval for Stage 3, so many doctors are still going that route on autopilot.  Ask more questions, and research regarding your best next step.

Gary

Hey Vicki,

Your new is wonderful!  Congrats!  Additionally, the research released that your doc was referencing confirms that Stage III folks treated with ipi do much better than those without treatment is super good news as well.  However, Gary makes a good point in that the sequential studies show that Stage IV folks given nivo then ipi had a 41% ORR, while those given ipi followed by nivo garnered only a 20% overall response rate.  Perhaps more oncologists need to look at these numbers, as well as the folks at the FDA, and first line treatments need to be adjusted, especially for Stage III and IV folks in need of adjuvant treatment, once again.  That being said, I would have given anything to be allowed treatment with ipi back in 2010 when I advanced to Stage IV but was rendered NED after SRS to a brain met and lung surgery.  So, ultimately, the news is good….we are making progress, but that doesn't mean we're home free yet!  Hang in there. 

Here's a link to the article your doc was talking about, as well as links within to the sequential study I mentioned and the results of the NED arm of the Nivo trial I particepated in from 2010 to 2013:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

celeste

Hey Vicki,

Your new is wonderful!  Congrats!  Additionally, the research released that your doc was referencing confirms that Stage III folks treated with ipi do much better than those without treatment is super good news as well.  However, Gary makes a good point in that the sequential studies show that Stage IV folks given nivo then ipi had a 41% ORR, while those given ipi followed by nivo garnered only a 20% overall response rate.  Perhaps more oncologists need to look at these numbers, as well as the folks at the FDA, and first line treatments need to be adjusted, especially for Stage III and IV folks in need of adjuvant treatment, once again.  That being said, I would have given anything to be allowed treatment with ipi back in 2010 when I advanced to Stage IV but was rendered NED after SRS to a brain met and lung surgery.  So, ultimately, the news is good….we are making progress, but that doesn't mean we're home free yet!  Hang in there. 

Here's a link to the article your doc was talking about, as well as links within to the sequential study I mentioned and the results of the NED arm of the Nivo trial I particepated in from 2010 to 2013:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

celeste

Hey Vicki,

Your new is wonderful!  Congrats!  Additionally, the research released that your doc was referencing confirms that Stage III folks treated with ipi do much better than those without treatment is super good news as well.  However, Gary makes a good point in that the sequential studies show that Stage IV folks given nivo then ipi had a 41% ORR, while those given ipi followed by nivo garnered only a 20% overall response rate.  Perhaps more oncologists need to look at these numbers, as well as the folks at the FDA, and first line treatments need to be adjusted, especially for Stage III and IV folks in need of adjuvant treatment, once again.  That being said, I would have given anything to be allowed treatment with ipi back in 2010 when I advanced to Stage IV but was rendered NED after SRS to a brain met and lung surgery.  So, ultimately, the news is good….we are making progress, but that doesn't mean we're home free yet!  Hang in there. 

Here's a link to the article your doc was talking about, as well as links within to the sequential study I mentioned and the results of the NED arm of the Nivo trial I particepated in from 2010 to 2013:   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

celeste

Hi Vicki, I am in the Pd-1 corner first as well or the combination of ipi and nivo, rather than ipi first. Best Wishes!!!!Ed

Hi Vicki, I am in the Pd-1 corner first as well or the combination of ipi and nivo, rather than ipi first. Best Wishes!!!!Ed

Hi Vicki, I am in the Pd-1 corner first as well or the combination of ipi and nivo, rather than ipi first. Best Wishes!!!!Ed

I had very few side effects and the ones I had were really nothing. People were always telling me how good I looked and they couldn't tell I had cancer or was going through treatment. Other than some fatigue at first I still go to work everyday, go camping and fishing and really everything I did before ipi. The words that caught me was you said high dose. I was on 3mg. I have read where people who were on higher doses, some 10mg and had serious side effects, some within the first week. I had my 4th dose on 9/9/2016 and now on the 4 doses of nivo then back to the combo for maitanance.

I had very few side effects and the ones I had were really nothing. People were always telling me how good I looked and they couldn't tell I had cancer or was going through treatment. Other than some fatigue at first I still go to work everyday, go camping and fishing and really everything I did before ipi. The words that caught me was you said high dose. I was on 3mg. I have read where people who were on higher doses, some 10mg and had serious side effects, some within the first week. I had my 4th dose on 9/9/2016 and now on the 4 doses of nivo then back to the combo for maitanance.

I had very few side effects and the ones I had were really nothing. People were always telling me how good I looked and they couldn't tell I had cancer or was going through treatment. Other than some fatigue at first I still go to work everyday, go camping and fishing and really everything I did before ipi. The words that caught me was you said high dose. I was on 3mg. I have read where people who were on higher doses, some 10mg and had serious side effects, some within the first week. I had my 4th dose on 9/9/2016 and now on the 4 doses of nivo then back to the combo for maitanance.

My husband was Stage IV and took the Ipi high dose 10 mg/kg initial 4 doses followed by a dose every 12 weeks for over 2 years more.  He had the Ipi itch, fatigue and his eye brows turned white and some pigmentation mostly in his face turned white but really no bad side effects.  His body does not produce enough cortisol so he takes 5 mg. of prednisone daily and is trying to wean off of it as well.  He also became NED over 4 years ago.

If you would like to read more about his journey you can check out his profile.  He also took daily injections of GM-CSF for 14 days and off for 7  for the full 2 years and 9 months with the Ipi.

Judy (loving wife of Gene Stage IV and now NED for over 4 years)

My husband was Stage IV and took the Ipi high dose 10 mg/kg initial 4 doses followed by a dose every 12 weeks for over 2 years more.  He had the Ipi itch, fatigue and his eye brows turned white and some pigmentation mostly in his face turned white but really no bad side effects.  His body does not produce enough cortisol so he takes 5 mg. of prednisone daily and is trying to wean off of it as well.  He also became NED over 4 years ago.

If you would like to read more about his journey you can check out his profile.  He also took daily injections of GM-CSF for 14 days and off for 7  for the full 2 years and 9 months with the Ipi.

Judy (loving wife of Gene Stage IV and now NED for over 4 years)

My husband was Stage IV and took the Ipi high dose 10 mg/kg initial 4 doses followed by a dose every 12 weeks for over 2 years more.  He had the Ipi itch, fatigue and his eye brows turned white and some pigmentation mostly in his face turned white but really no bad side effects.  His body does not produce enough cortisol so he takes 5 mg. of prednisone daily and is trying to wean off of it as well.  He also became NED over 4 years ago.

If you would like to read more about his journey you can check out his profile.  He also took daily injections of GM-CSF for 14 days and off for 7  for the full 2 years and 9 months with the Ipi.

Judy (loving wife of Gene Stage IV and now NED for over 4 years)