Looking for ipi/nivo experiences from those who’ve been through it

Hello,

First of all, I'm so sorry your family is going through this. I'm glad to hear that your father is doing better.

I was on the combo earlier this year when it was still in trial. I made it through three of the four infusions (yes, that is the norm) before I got extremely ill. I lost 20 pounds in four days. I was hospitalized, put on steroids, and taken off of the treatment. However, my 12 week scans showed 95% reduction. Following this I did one dose of Yervoy  and him still on Opdivo.  Scans done three weeks ago showed  I am now cancer free! 

Within six hours of my first treatment, my subcutaneous tumors grew substantially. I also developed a rash on what I call all of my "Melanoma Spots" (over my primary (left calf), over the lymph nodes it spread to (left groin), over any subcutaneous tumors, and over my liver where I had mets).

I hope this helps a little bit. If you have further questions, please feel free to email me:

[email protected]

Best of luck,

Ashley

Hello,

First of all, I'm so sorry your family is going through this. I'm glad to hear that your father is doing better.

I was on the combo earlier this year when it was still in trial. I made it through three of the four infusions (yes, that is the norm) before I got extremely ill. I lost 20 pounds in four days. I was hospitalized, put on steroids, and taken off of the treatment. However, my 12 week scans showed 95% reduction. Following this I did one dose of Yervoy  and him still on Opdivo.  Scans done three weeks ago showed  I am now cancer free! 

Within six hours of my first treatment, my subcutaneous tumors grew substantially. I also developed a rash on what I call all of my "Melanoma Spots" (over my primary (left calf), over the lymph nodes it spread to (left groin), over any subcutaneous tumors, and over my liver where I had mets).

I hope this helps a little bit. If you have further questions, please feel free to email me:

[email protected]

Best of luck,

Ashley

Hello,

First of all, I'm so sorry your family is going through this. I'm glad to hear that your father is doing better.

I was on the combo earlier this year when it was still in trial. I made it through three of the four infusions (yes, that is the norm) before I got extremely ill. I lost 20 pounds in four days. I was hospitalized, put on steroids, and taken off of the treatment. However, my 12 week scans showed 95% reduction. Following this I did one dose of Yervoy  and him still on Opdivo.  Scans done three weeks ago showed  I am now cancer free! 

Within six hours of my first treatment, my subcutaneous tumors grew substantially. I also developed a rash on what I call all of my "Melanoma Spots" (over my primary (left calf), over the lymph nodes it spread to (left groin), over any subcutaneous tumors, and over my liver where I had mets).

I hope this helps a little bit. If you have further questions, please feel free to email me:

[email protected]

Best of luck,

Ashley

Hi NC1983, the standard of care is ipi every three weeks for a max of 4 doses and Nivo(opdivo) every two weeks for up to 2 years. They usually wait for 12 weeks from the start of treatment before they scan again to see if tumors are changing. Ipi usally takes some time before there is a change when given by itself, where Nivo usually works faster as a monotherapy, scans by 8 weeks can  show results. When the two drugs are given together in the phase 3 trial the standard was to scan at 12 weeks. The checkmate 67 trial is just coming to a conclusion and the final data will be presented at ASCO June 2016. The results from the phase 1 and 2 trials were excellent where two year overall survival was in the high 70% range. It will be very interesting to see the data from the phase 3 where 950 patients world wide have participated. The one thing that you have to remember is that all of us that were part of this trial don't know which of the three arms of the trial we were in. We either recieved ipi by itself or nivo by itself or the combination of the two drugs. Make sure that you report any changes like diarrhea or bad cough, or severe itching or rash, they can lead to some pretty nasty side effects. In the early studies there were cases where the patients got worse  before getting better. The scans can show growth and yet the patient can start to feel better, so delayed response can happen. Wishing you the best!!! Ed

Hi NC1983, the standard of care is ipi every three weeks for a max of 4 doses and Nivo(opdivo) every two weeks for up to 2 years. They usually wait for 12 weeks from the start of treatment before they scan again to see if tumors are changing. Ipi usally takes some time before there is a change when given by itself, where Nivo usually works faster as a monotherapy, scans by 8 weeks can  show results. When the two drugs are given together in the phase 3 trial the standard was to scan at 12 weeks. The checkmate 67 trial is just coming to a conclusion and the final data will be presented at ASCO June 2016. The results from the phase 1 and 2 trials were excellent where two year overall survival was in the high 70% range. It will be very interesting to see the data from the phase 3 where 950 patients world wide have participated. The one thing that you have to remember is that all of us that were part of this trial don't know which of the three arms of the trial we were in. We either recieved ipi by itself or nivo by itself or the combination of the two drugs. Make sure that you report any changes like diarrhea or bad cough, or severe itching or rash, they can lead to some pretty nasty side effects. In the early studies there were cases where the patients got worse  before getting better. The scans can show growth and yet the patient can start to feel better, so delayed response can happen. Wishing you the best!!! Ed

Hi NC1983, the standard of care is ipi every three weeks for a max of 4 doses and Nivo(opdivo) every two weeks for up to 2 years. They usually wait for 12 weeks from the start of treatment before they scan again to see if tumors are changing. Ipi usally takes some time before there is a change when given by itself, where Nivo usually works faster as a monotherapy, scans by 8 weeks can  show results. When the two drugs are given together in the phase 3 trial the standard was to scan at 12 weeks. The checkmate 67 trial is just coming to a conclusion and the final data will be presented at ASCO June 2016. The results from the phase 1 and 2 trials were excellent where two year overall survival was in the high 70% range. It will be very interesting to see the data from the phase 3 where 950 patients world wide have participated. The one thing that you have to remember is that all of us that were part of this trial don't know which of the three arms of the trial we were in. We either recieved ipi by itself or nivo by itself or the combination of the two drugs. Make sure that you report any changes like diarrhea or bad cough, or severe itching or rash, they can lead to some pretty nasty side effects. In the early studies there were cases where the patients got worse  before getting better. The scans can show growth and yet the patient can start to feel better, so delayed response can happen. Wishing you the best!!! Ed

NC1983,

Just a couple quick thoughts and comments.

Definitely not unusual to have tumors grow after starting immunotherapy.   Sometimes it's due to a delayed action and sometimes it's because your immune system is sending all those killer cells to the tumor causing it to swell and inflame.  Doesn't always happen that way but certainly does sometimes.  That would also make sense why some of his lymph nodes are sore now.

As far as why he is in such pain now after initially feeling better I don't know.  I do recall one story told on this site where a patients tumor grew significantly and then imploded.  I remember that patient saying it was extremely painful.  Not sure if your Dad is experiencing something similar.  It would be great if that's what it is.

I'm not real familiar with how the concurrent treatment of Ipi and Nivo is given.  I did mine in a trial sequentially.  I assumed your dad would have gotten both drugs at the same time but from your post that may not be the case.  Regardless, I'm pretty sure no one would recommend going more than the four combo treatments.  As you can see from a previous post the combo can be pretty potent so you are doing well to get through all four treatments.  The standard protocol is to switch to just nivo after the combo.  It would be interesting to see what is recommended if it turns out your father is responding to ipi and not nivo.  Your observation that he only felt better after the Ipi infusion could make that a possiblity.  I've never heard of that but I guess it's possible.  I believe with ipi after the first 4 infusions if follow up is needed it's done on a 3 month interval but I'm not positive about that. 

Don't think it's two unusual for your doctors not to biospy or remove the tumors.  I think it's pretty obvious what they are so no need to biopsy unless they are looking for a genetic trait to recommend a treatment.  Also no need to surgically remove unless it's growth could be life threatening or pain is an issue.  It is a systemic battle now.  What that means is it's a full body battle now and cutting out a tumor here or a tumor there probably won't impact outcome at all and only cause additional stress on the patient. 

Of course these are only my opinions so take them with a grain of salt.  I wish you and your Dad the best.

Brian

NC1983,

Just a couple quick thoughts and comments.

Definitely not unusual to have tumors grow after starting immunotherapy.   Sometimes it's due to a delayed action and sometimes it's because your immune system is sending all those killer cells to the tumor causing it to swell and inflame.  Doesn't always happen that way but certainly does sometimes.  That would also make sense why some of his lymph nodes are sore now.

As far as why he is in such pain now after initially feeling better I don't know.  I do recall one story told on this site where a patients tumor grew significantly and then imploded.  I remember that patient saying it was extremely painful.  Not sure if your Dad is experiencing something similar.  It would be great if that's what it is.

I'm not real familiar with how the concurrent treatment of Ipi and Nivo is given.  I did mine in a trial sequentially.  I assumed your dad would have gotten both drugs at the same time but from your post that may not be the case.  Regardless, I'm pretty sure no one would recommend going more than the four combo treatments.  As you can see from a previous post the combo can be pretty potent so you are doing well to get through all four treatments.  The standard protocol is to switch to just nivo after the combo.  It would be interesting to see what is recommended if it turns out your father is responding to ipi and not nivo.  Your observation that he only felt better after the Ipi infusion could make that a possiblity.  I've never heard of that but I guess it's possible.  I believe with ipi after the first 4 infusions if follow up is needed it's done on a 3 month interval but I'm not positive about that. 

Don't think it's two unusual for your doctors not to biospy or remove the tumors.  I think it's pretty obvious what they are so no need to biopsy unless they are looking for a genetic trait to recommend a treatment.  Also no need to surgically remove unless it's growth could be life threatening or pain is an issue.  It is a systemic battle now.  What that means is it's a full body battle now and cutting out a tumor here or a tumor there probably won't impact outcome at all and only cause additional stress on the patient. 

Of course these are only my opinions so take them with a grain of salt.  I wish you and your Dad the best.

Brian

NC1983,

Just a couple quick thoughts and comments.

Definitely not unusual to have tumors grow after starting immunotherapy.   Sometimes it's due to a delayed action and sometimes it's because your immune system is sending all those killer cells to the tumor causing it to swell and inflame.  Doesn't always happen that way but certainly does sometimes.  That would also make sense why some of his lymph nodes are sore now.

As far as why he is in such pain now after initially feeling better I don't know.  I do recall one story told on this site where a patients tumor grew significantly and then imploded.  I remember that patient saying it was extremely painful.  Not sure if your Dad is experiencing something similar.  It would be great if that's what it is.

I'm not real familiar with how the concurrent treatment of Ipi and Nivo is given.  I did mine in a trial sequentially.  I assumed your dad would have gotten both drugs at the same time but from your post that may not be the case.  Regardless, I'm pretty sure no one would recommend going more than the four combo treatments.  As you can see from a previous post the combo can be pretty potent so you are doing well to get through all four treatments.  The standard protocol is to switch to just nivo after the combo.  It would be interesting to see what is recommended if it turns out your father is responding to ipi and not nivo.  Your observation that he only felt better after the Ipi infusion could make that a possiblity.  I've never heard of that but I guess it's possible.  I believe with ipi after the first 4 infusions if follow up is needed it's done on a 3 month interval but I'm not positive about that. 

Don't think it's two unusual for your doctors not to biospy or remove the tumors.  I think it's pretty obvious what they are so no need to biopsy unless they are looking for a genetic trait to recommend a treatment.  Also no need to surgically remove unless it's growth could be life threatening or pain is an issue.  It is a systemic battle now.  What that means is it's a full body battle now and cutting out a tumor here or a tumor there probably won't impact outcome at all and only cause additional stress on the patient. 

Of course these are only my opinions so take them with a grain of salt.  I wish you and your Dad the best.

Brian