› Forums › General Melanoma Community › Insurance approved Nivo for 3c
- This topic has 72 replies, 8 voices, and was last updated 9 years, 4 months ago by
jamieth29.
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- January 27, 2016 at 6:45 pm
Just got done at my local oncologist visit and found out they approved it for me. I was very surprised just wanted to let people know some doctors and Insurance may let people get it. I still have some hurdles to get through the first big step is pet/ct and MRI next Thursday. I asked my doctor how long we would go for and his opinion was 6 months or a year. I’m still unsure about my decision and am not going try and not Look past scans on Thursday hopefully the come out clear. I tried getting Nivo through a trial before but relapsed locally before trial started. So I am basically getting trial at home. Everything in 3c N.E.D is kind of a unknown as far as side effects and such but leaning heavy on going for it. I have read info on the trial that Celest went through a couple times so there is some data. Any thoughts or questions?
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- January 27, 2016 at 7:10 pm
Jamie, glad to hear your news. I agree with your instinct to go for the treatment. As you know, "NED" is only what shows up on the scan and is visible to the naked eye. Separately, while I have limited experience with nivo, I received ~16 infusions of pembro. The side effects were quite manageable and I would gladly take a (long) lifetime of those side effects versus the alternative.
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- January 27, 2016 at 7:10 pm
Jamie, glad to hear your news. I agree with your instinct to go for the treatment. As you know, "NED" is only what shows up on the scan and is visible to the naked eye. Separately, while I have limited experience with nivo, I received ~16 infusions of pembro. The side effects were quite manageable and I would gladly take a (long) lifetime of those side effects versus the alternative.
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- January 27, 2016 at 7:10 pm
Jamie, glad to hear your news. I agree with your instinct to go for the treatment. As you know, "NED" is only what shows up on the scan and is visible to the naked eye. Separately, while I have limited experience with nivo, I received ~16 infusions of pembro. The side effects were quite manageable and I would gladly take a (long) lifetime of those side effects versus the alternative.
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- January 27, 2016 at 7:39 pm
Just curious why not ippi or ippi and nivo. I have not heard of nivo in the adjuvacant setting yet. Unless this is something new. Thanks greg-
- January 27, 2016 at 8:54 pm
The Reason we put in for pd1 was it has shown better response rates in stage 4 people. There are ongoing trials with pd1 as adjuvant. Ipi/nivo has some hard side effects but i would definitely consider it. I feel like i didn’t want the doctor to push my luck asking insurance for it because it is much more expensive. I feel lucky they approved nivo by itself…if that makes sense. -
- January 27, 2016 at 8:54 pm
The Reason we put in for pd1 was it has shown better response rates in stage 4 people. There are ongoing trials with pd1 as adjuvant. Ipi/nivo has some hard side effects but i would definitely consider it. I feel like i didn’t want the doctor to push my luck asking insurance for it because it is much more expensive. I feel lucky they approved nivo by itself…if that makes sense. -
- January 27, 2016 at 8:54 pm
The Reason we put in for pd1 was it has shown better response rates in stage 4 people. There are ongoing trials with pd1 as adjuvant. Ipi/nivo has some hard side effects but i would definitely consider it. I feel like i didn’t want the doctor to push my luck asking insurance for it because it is much more expensive. I feel lucky they approved nivo by itself…if that makes sense.
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- January 27, 2016 at 8:26 pm
WOW, thats pretty exciting jamie….but i have the same question as GREG….i thought you would have to have IPI first in the adjuvant setting…..then progress to get NIVO, off trial??????
Just to understand completely?…..they are allowing you to do NIVO, wihtou doing IPI at all…..while NED (hopefully after your upcoming scans)
Wonder if same would be an option for RECURRENT 3B…..instead of IPI?????
VERY intersesting…
I see my DR on Monday and will ahve scans soon thereafter!!!!!!
Keeping my fingers crossed for you on SCANS/MRI next week…..
jenny
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- January 27, 2016 at 8:26 pm
WOW, thats pretty exciting jamie….but i have the same question as GREG….i thought you would have to have IPI first in the adjuvant setting…..then progress to get NIVO, off trial??????
Just to understand completely?…..they are allowing you to do NIVO, wihtou doing IPI at all…..while NED (hopefully after your upcoming scans)
Wonder if same would be an option for RECURRENT 3B…..instead of IPI?????
VERY intersesting…
I see my DR on Monday and will ahve scans soon thereafter!!!!!!
Keeping my fingers crossed for you on SCANS/MRI next week…..
jenny
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- January 27, 2016 at 9:08 pm
Jenny, they just approved nivo frontline for braf mutant and wild for stage 4 so i believe there is enough data from trials proving pd1 has better response rates when taken before ipi. If you fail ipi or anythung for that matter at stage 3, unless its another local reccurance your probably stage 4 so in adjuvant setting i don’t think there is much room for 1st or 2nd line either it works or not. So yes they approved stage 3c ned nivo as adjuvant before ipi. As far as approving for 3b its possible never know if you don’t ask. One of the greatest things about my local doctor is he is willing to listen to me and let me show him things about trials I find out and is willing to ask and argue the point with insurance for me. Scans are already freaking me out but better to know than not so have to look at it that way. Hoping the best for you on your scans also! -
- January 27, 2016 at 9:08 pm
Jenny, they just approved nivo frontline for braf mutant and wild for stage 4 so i believe there is enough data from trials proving pd1 has better response rates when taken before ipi. If you fail ipi or anythung for that matter at stage 3, unless its another local reccurance your probably stage 4 so in adjuvant setting i don’t think there is much room for 1st or 2nd line either it works or not. So yes they approved stage 3c ned nivo as adjuvant before ipi. As far as approving for 3b its possible never know if you don’t ask. One of the greatest things about my local doctor is he is willing to listen to me and let me show him things about trials I find out and is willing to ask and argue the point with insurance for me. Scans are already freaking me out but better to know than not so have to look at it that way. Hoping the best for you on your scans also! -
- January 28, 2016 at 11:29 pm
Hi Jaime,
I am new to the board. My husband is 3c NED at this time. We have spoken with several doctors and we're not able to find one willing to give him NIVO in the adjuvant setting. Would you be willing to share who your DR is?
thanks very much,
Jessica
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- January 28, 2016 at 11:29 pm
Hi Jaime,
I am new to the board. My husband is 3c NED at this time. We have spoken with several doctors and we're not able to find one willing to give him NIVO in the adjuvant setting. Would you be willing to share who your DR is?
thanks very much,
Jessica
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- January 28, 2016 at 11:29 pm
Hi Jaime,
I am new to the board. My husband is 3c NED at this time. We have spoken with several doctors and we're not able to find one willing to give him NIVO in the adjuvant setting. Would you be willing to share who your DR is?
thanks very much,
Jessica
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- January 27, 2016 at 9:08 pm
Jenny, they just approved nivo frontline for braf mutant and wild for stage 4 so i believe there is enough data from trials proving pd1 has better response rates when taken before ipi. If you fail ipi or anythung for that matter at stage 3, unless its another local reccurance your probably stage 4 so in adjuvant setting i don’t think there is much room for 1st or 2nd line either it works or not. So yes they approved stage 3c ned nivo as adjuvant before ipi. As far as approving for 3b its possible never know if you don’t ask. One of the greatest things about my local doctor is he is willing to listen to me and let me show him things about trials I find out and is willing to ask and argue the point with insurance for me. Scans are already freaking me out but better to know than not so have to look at it that way. Hoping the best for you on your scans also!
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- January 27, 2016 at 8:26 pm
WOW, thats pretty exciting jamie….but i have the same question as GREG….i thought you would have to have IPI first in the adjuvant setting…..then progress to get NIVO, off trial??????
Just to understand completely?…..they are allowing you to do NIVO, wihtou doing IPI at all…..while NED (hopefully after your upcoming scans)
Wonder if same would be an option for RECURRENT 3B…..instead of IPI?????
VERY intersesting…
I see my DR on Monday and will ahve scans soon thereafter!!!!!!
Keeping my fingers crossed for you on SCANS/MRI next week…..
jenny
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- January 27, 2016 at 8:32 pm
Jamie,
I think that sounds fantastic. If I would have been given that option 4 years ago when I was IIIB and NED I would have jumped at it. Best of luck on the upcoming scans.
Brian
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- January 28, 2016 at 12:56 am
Congrats, Jamie! I think anti-PD1 is fast on its way to being a standard first line adjuvant treatment for Stage III/IV NED melanoma patients who wish to pursue that option. And to my way of thinking….it's about time! We know immunotherapy works best with the lowest tumor burden. As far as side effects: The side effects of all the immunotherapy drugs…whether you are talking about nivo, pembro, or the ipi/nivo combo are consistent across patients. Meaning, the side effect profiles are now pretty clearly defined for each drug and occur with similar consistency whether you are Stage III or IV…NED or not. Wishing you my best with your decision and treatment. Glad you have options. Celeste
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- January 28, 2016 at 12:56 am
Congrats, Jamie! I think anti-PD1 is fast on its way to being a standard first line adjuvant treatment for Stage III/IV NED melanoma patients who wish to pursue that option. And to my way of thinking….it's about time! We know immunotherapy works best with the lowest tumor burden. As far as side effects: The side effects of all the immunotherapy drugs…whether you are talking about nivo, pembro, or the ipi/nivo combo are consistent across patients. Meaning, the side effect profiles are now pretty clearly defined for each drug and occur with similar consistency whether you are Stage III or IV…NED or not. Wishing you my best with your decision and treatment. Glad you have options. Celeste
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- January 28, 2016 at 1:56 am
Haha Jenny he might…I think half the battle is just getting the Doctors to ask for it. Soon after I was diagnosed and before i knew much about adjuvant treatment the first doctor i saw told me there was nothing she could do for me and suggested i look for a trial. When I asked her if I could get ipi she just flat out said no its not a option that was at cancer treatment centers of america. I then went to university of Madison and was also told no chance of ipi. My local Doctor (the same) said he’d try and put in for it and had some trial evidence to support his thinking…guess what they said yes. He was the only one willing to try. He feels ok going outside the box if its a feesable option. I also think he respects my opinion. The other side is definitely Insurance has to be willing and to be honest I’m surprised. When i was first diagnosed i had a hmo insurance mainly because i was cheap,young,strong and thought I’d live forever. When I found out how bad my insurance was about what doctor’s and hospitals i could go to i pulled some tricks and switched to ppo I was amazed at the change in the way I was treated. -
- January 28, 2016 at 1:56 am
Haha Jenny he might…I think half the battle is just getting the Doctors to ask for it. Soon after I was diagnosed and before i knew much about adjuvant treatment the first doctor i saw told me there was nothing she could do for me and suggested i look for a trial. When I asked her if I could get ipi she just flat out said no its not a option that was at cancer treatment centers of america. I then went to university of Madison and was also told no chance of ipi. My local Doctor (the same) said he’d try and put in for it and had some trial evidence to support his thinking…guess what they said yes. He was the only one willing to try. He feels ok going outside the box if its a feesable option. I also think he respects my opinion. The other side is definitely Insurance has to be willing and to be honest I’m surprised. When i was first diagnosed i had a hmo insurance mainly because i was cheap,young,strong and thought I’d live forever. When I found out how bad my insurance was about what doctor’s and hospitals i could go to i pulled some tricks and switched to ppo I was amazed at the change in the way I was treated. -
- January 28, 2016 at 2:27 am
Jamie-
Your news came just in time..I see my onc (Pavlick) on monday and am going to see what she thinks about asking for it. Who knows if she'll think the side effects are still an issue for me (re: colitis)…but i am going to ask….then I am going to call back PENN and see what she thinks about asking for PD1…..cant hurt….
Thats why this forum is so invaluable…..so many smart people all pushing the envelope for improved treament options…..
Thanks Jamie!!!!!!
Hoping to hear good news from you on your scans…
I'll post again after my appt on monday.
Best to all!
jenny
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- January 28, 2016 at 2:27 am
Jamie-
Your news came just in time..I see my onc (Pavlick) on monday and am going to see what she thinks about asking for it. Who knows if she'll think the side effects are still an issue for me (re: colitis)…but i am going to ask….then I am going to call back PENN and see what she thinks about asking for PD1…..cant hurt….
Thats why this forum is so invaluable…..so many smart people all pushing the envelope for improved treament options…..
Thanks Jamie!!!!!!
Hoping to hear good news from you on your scans…
I'll post again after my appt on monday.
Best to all!
jenny
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- January 28, 2016 at 2:59 am
Jenny, one more thing to throw out there for you. At one point i went to Moffitt to see Dr Weber for a ipi/pd1 adjuvant trial but the trial stopped recruiting just before i got in. Anyway the trial nurse was excellent and right after Weber left she called me. She told me about the pembro/placebo trial but then also told me this. Dr Weber was going to do the same ipi/nivo adjuvant trial at NYU once he got settled. I did not speak to Dr Weber about this and he never told me that directly or anything but it may be something to ask about. The nurse said He got his team at Moffitt together and told him that and she wanted to let me know that it may happen at NYU so keep my ears open. Might never happen but again don’t hurt to ask. -
- January 28, 2016 at 2:59 am
Jenny, one more thing to throw out there for you. At one point i went to Moffitt to see Dr Weber for a ipi/pd1 adjuvant trial but the trial stopped recruiting just before i got in. Anyway the trial nurse was excellent and right after Weber left she called me. She told me about the pembro/placebo trial but then also told me this. Dr Weber was going to do the same ipi/nivo adjuvant trial at NYU once he got settled. I did not speak to Dr Weber about this and he never told me that directly or anything but it may be something to ask about. The nurse said He got his team at Moffitt together and told him that and she wanted to let me know that it may happen at NYU so keep my ears open. Might never happen but again don’t hurt to ask. -
- January 28, 2016 at 3:15 am
Thanks Jamie….I will ask if any new trials have opened or may be opening at NYU…..havent heard of any yet…..i am just really worried that Pavlick wont want to give me anything due to the vaccine trial and the colitis, though as you know PENN is willing to….ugh, such tough decisions for us all!
Will write more after i see them on Modany..
thanks again jamie, much appreciated!
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- January 28, 2016 at 3:15 am
Thanks Jamie….I will ask if any new trials have opened or may be opening at NYU…..havent heard of any yet…..i am just really worried that Pavlick wont want to give me anything due to the vaccine trial and the colitis, though as you know PENN is willing to….ugh, such tough decisions for us all!
Will write more after i see them on Modany..
thanks again jamie, much appreciated!
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- January 28, 2016 at 3:15 am
Thanks Jamie….I will ask if any new trials have opened or may be opening at NYU…..havent heard of any yet…..i am just really worried that Pavlick wont want to give me anything due to the vaccine trial and the colitis, though as you know PENN is willing to….ugh, such tough decisions for us all!
Will write more after i see them on Modany..
thanks again jamie, much appreciated!
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- January 28, 2016 at 2:59 am
Jenny, one more thing to throw out there for you. At one point i went to Moffitt to see Dr Weber for a ipi/pd1 adjuvant trial but the trial stopped recruiting just before i got in. Anyway the trial nurse was excellent and right after Weber left she called me. She told me about the pembro/placebo trial but then also told me this. Dr Weber was going to do the same ipi/nivo adjuvant trial at NYU once he got settled. I did not speak to Dr Weber about this and he never told me that directly or anything but it may be something to ask about. The nurse said He got his team at Moffitt together and told him that and she wanted to let me know that it may happen at NYU so keep my ears open. Might never happen but again don’t hurt to ask. -
- January 28, 2016 at 2:27 am
Jamie-
Your news came just in time..I see my onc (Pavlick) on monday and am going to see what she thinks about asking for it. Who knows if she'll think the side effects are still an issue for me (re: colitis)…but i am going to ask….then I am going to call back PENN and see what she thinks about asking for PD1…..cant hurt….
Thats why this forum is so invaluable…..so many smart people all pushing the envelope for improved treament options…..
Thanks Jamie!!!!!!
Hoping to hear good news from you on your scans…
I'll post again after my appt on monday.
Best to all!
jenny
-
- January 28, 2016 at 1:56 am
Haha Jenny he might…I think half the battle is just getting the Doctors to ask for it. Soon after I was diagnosed and before i knew much about adjuvant treatment the first doctor i saw told me there was nothing she could do for me and suggested i look for a trial. When I asked her if I could get ipi she just flat out said no its not a option that was at cancer treatment centers of america. I then went to university of Madison and was also told no chance of ipi. My local Doctor (the same) said he’d try and put in for it and had some trial evidence to support his thinking…guess what they said yes. He was the only one willing to try. He feels ok going outside the box if its a feesable option. I also think he respects my opinion. The other side is definitely Insurance has to be willing and to be honest I’m surprised. When i was first diagnosed i had a hmo insurance mainly because i was cheap,young,strong and thought I’d live forever. When I found out how bad my insurance was about what doctor’s and hospitals i could go to i pulled some tricks and switched to ppo I was amazed at the change in the way I was treated. -
- January 28, 2016 at 1:40 am
Thanks Celest I definitely thought of you and the other 32 from the Moffitt trial when i asked for this. I had my doctor pull the trial up and read everything over while i was in his office. Obviously you did the trial because you felt it was necessary but also helped pave the way to give me this chance. -
- January 28, 2016 at 1:40 am
Thanks Celest I definitely thought of you and the other 32 from the Moffitt trial when i asked for this. I had my doctor pull the trial up and read everything over while i was in his office. Obviously you did the trial because you felt it was necessary but also helped pave the way to give me this chance. -
- January 28, 2016 at 1:40 am
Thanks Celest I definitely thought of you and the other 32 from the Moffitt trial when i asked for this. I had my doctor pull the trial up and read everything over while i was in his office. Obviously you did the trial because you felt it was necessary but also helped pave the way to give me this chance.
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- January 28, 2016 at 12:56 am
Congrats, Jamie! I think anti-PD1 is fast on its way to being a standard first line adjuvant treatment for Stage III/IV NED melanoma patients who wish to pursue that option. And to my way of thinking….it's about time! We know immunotherapy works best with the lowest tumor burden. As far as side effects: The side effects of all the immunotherapy drugs…whether you are talking about nivo, pembro, or the ipi/nivo combo are consistent across patients. Meaning, the side effect profiles are now pretty clearly defined for each drug and occur with similar consistency whether you are Stage III or IV…NED or not. Wishing you my best with your decision and treatment. Glad you have options. Celeste
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- January 28, 2016 at 11:33 pm
Is Opdivo approved by the FDA for stage III? I thought it was only approved for stage IV and this is only after IPI?
I am on the clinical trial for stage IIIB of IPI or Nivo. I am at week 22 of 50 weeks.
Tom
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- January 30, 2016 at 4:39 pm
I find that very confusing to me. I know there are many other reasons involved but I have to say I think you are very fortunate to get the Nivo at stage IIIC. I am stage IIIB and made the choice to go with the clinical trial of IPI/NIVO. 50 weeks of infusions.
How many infusions of NIVO will you be getting? Good thing for you I think the body does tolerate the NIVO better than IPI. I think I am getting 26 treatments of NIVO. I hope it helps reduce the recurrence.
Good luck to you. I think you will find you are blessed to get the NIVO and it does not promote too many side effects. It is just the need to go to the hospital every other week. I had to get a port because I was starting to have issues of getting poked in my right arm.
Tom
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- January 30, 2016 at 4:39 pm
I find that very confusing to me. I know there are many other reasons involved but I have to say I think you are very fortunate to get the Nivo at stage IIIC. I am stage IIIB and made the choice to go with the clinical trial of IPI/NIVO. 50 weeks of infusions.
How many infusions of NIVO will you be getting? Good thing for you I think the body does tolerate the NIVO better than IPI. I think I am getting 26 treatments of NIVO. I hope it helps reduce the recurrence.
Good luck to you. I think you will find you are blessed to get the NIVO and it does not promote too many side effects. It is just the need to go to the hospital every other week. I had to get a port because I was starting to have issues of getting poked in my right arm.
Tom
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- January 30, 2016 at 7:05 pm
Tom as you know every case is different and that most likely played a role in the treatment. Until i had this last surgery I was 3c unresectable. With all the surgery that has been done to my leg this last one was it. There will be no more, my leg can’t handle it. Also the ned is “in theory” and won’t know for sure until scans on Thursday. I haven’t had a clear scan since I was diagnosed in April. Now we don’t fully know if Nivo is going to show better efficacy than ipi in adjuvant as it simply has not been proven. It is a chance you are willing to take as am I. BUT nobody knows the answer. There is definitely a chance it will be better if you look at small “basket trial” data. The drug company’s and researchers obviously see possibility’s there also. I tried to get in the same checkmate 238 trial but had in transit disease come back on my leg before i even started. If things go well with scan and that’s a big if for me, it will be 6 months of treatment with the possibility of going the full year. Good luck to you also and we all hope nivo proves to have a big advantage over ipi in the trial and stage 3 people can get some options on treatment that show high efficacy. -
- January 30, 2016 at 7:05 pm
Tom as you know every case is different and that most likely played a role in the treatment. Until i had this last surgery I was 3c unresectable. With all the surgery that has been done to my leg this last one was it. There will be no more, my leg can’t handle it. Also the ned is “in theory” and won’t know for sure until scans on Thursday. I haven’t had a clear scan since I was diagnosed in April. Now we don’t fully know if Nivo is going to show better efficacy than ipi in adjuvant as it simply has not been proven. It is a chance you are willing to take as am I. BUT nobody knows the answer. There is definitely a chance it will be better if you look at small “basket trial” data. The drug company’s and researchers obviously see possibility’s there also. I tried to get in the same checkmate 238 trial but had in transit disease come back on my leg before i even started. If things go well with scan and that’s a big if for me, it will be 6 months of treatment with the possibility of going the full year. Good luck to you also and we all hope nivo proves to have a big advantage over ipi in the trial and stage 3 people can get some options on treatment that show high efficacy. -
- January 30, 2016 at 7:05 pm
Tom as you know every case is different and that most likely played a role in the treatment. Until i had this last surgery I was 3c unresectable. With all the surgery that has been done to my leg this last one was it. There will be no more, my leg can’t handle it. Also the ned is “in theory” and won’t know for sure until scans on Thursday. I haven’t had a clear scan since I was diagnosed in April. Now we don’t fully know if Nivo is going to show better efficacy than ipi in adjuvant as it simply has not been proven. It is a chance you are willing to take as am I. BUT nobody knows the answer. There is definitely a chance it will be better if you look at small “basket trial” data. The drug company’s and researchers obviously see possibility’s there also. I tried to get in the same checkmate 238 trial but had in transit disease come back on my leg before i even started. If things go well with scan and that’s a big if for me, it will be 6 months of treatment with the possibility of going the full year. Good luck to you also and we all hope nivo proves to have a big advantage over ipi in the trial and stage 3 people can get some options on treatment that show high efficacy. -
- January 30, 2016 at 4:39 pm
I find that very confusing to me. I know there are many other reasons involved but I have to say I think you are very fortunate to get the Nivo at stage IIIC. I am stage IIIB and made the choice to go with the clinical trial of IPI/NIVO. 50 weeks of infusions.
How many infusions of NIVO will you be getting? Good thing for you I think the body does tolerate the NIVO better than IPI. I think I am getting 26 treatments of NIVO. I hope it helps reduce the recurrence.
Good luck to you. I think you will find you are blessed to get the NIVO and it does not promote too many side effects. It is just the need to go to the hospital every other week. I had to get a port because I was starting to have issues of getting poked in my right arm.
Tom
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