› Forums › General Melanoma Community › Ipi/nivo response rates on this board
- This topic has 41 replies, 13 voices, and was last updated 5 years, 6 months ago by
Canadian melanoma wife.
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- February 7, 2017 at 1:02 pm
There have been a quite a few questions related to this combo lately and will probably only continue to be more. I thought it might be helpful for everyone to see what the response rates look like from members on this board. Who has taken this combo? How many treatments of the 4 did you manage? 12 week scans show stable or tumor shrinkage? Did you need to move onto anything else after just opdivo? Were you considered a full responder?
For me personally it is one thing to read clinical studies but another thing entirely to hear personally from the Warriors who have gone through this journey before some of us newbies. Being 33 diagnosed 2 months ago with stage 4 I can't get enough positive news and hope from this site unfortunately I am sure there will be many others like me, new to this site, that could use that hope too
Thank you!
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- February 7, 2017 at 1:13 pm
July 2016 PET scan came back 7 mets in my lungs, largest about 1.7 cm. Started combo in july, had 4 combos, 4 just opdivo, 1 more combo and 2 more opdivo. Rash started on week 2 but never itched or burned and have always had at least 1 side effect sometimes 2 or 3 at a time. Scan on 12/29/16 came back "near complete resolution". I reacted very well, never missed a dose, never had to take steriods, no intestinal issues and have continued to work full time. After 6 or 7 doses it took my thyriod out but small price to pay for living.
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- February 7, 2017 at 5:08 pm
So promising and ecouraging to hear! Such a pleasure on my ear to hear "complete resolution"!
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- February 7, 2017 at 5:08 pm
So promising and ecouraging to hear! Such a pleasure on my ear to hear "complete resolution"!
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- February 7, 2017 at 5:08 pm
So promising and ecouraging to hear! Such a pleasure on my ear to hear "complete resolution"!
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- February 7, 2017 at 1:13 pm
July 2016 PET scan came back 7 mets in my lungs, largest about 1.7 cm. Started combo in july, had 4 combos, 4 just opdivo, 1 more combo and 2 more opdivo. Rash started on week 2 but never itched or burned and have always had at least 1 side effect sometimes 2 or 3 at a time. Scan on 12/29/16 came back "near complete resolution". I reacted very well, never missed a dose, never had to take steriods, no intestinal issues and have continued to work full time. After 6 or 7 doses it took my thyriod out but small price to pay for living.
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- February 7, 2017 at 1:13 pm
July 2016 PET scan came back 7 mets in my lungs, largest about 1.7 cm. Started combo in july, had 4 combos, 4 just opdivo, 1 more combo and 2 more opdivo. Rash started on week 2 but never itched or burned and have always had at least 1 side effect sometimes 2 or 3 at a time. Scan on 12/29/16 came back "near complete resolution". I reacted very well, never missed a dose, never had to take steriods, no intestinal issues and have continued to work full time. After 6 or 7 doses it took my thyriod out but small price to pay for living.
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- February 7, 2017 at 1:34 pm
I have done 4 combos,.Only fatigue and rash. They did scans at zero and week 8, unfortunately I had progression to liver and lungs. ( ( previously stage 3c with intransits on left inner thigh, after clnd on 9/29)I am scheduled to have first maintenance nivo on week 12 in 10 days. They will do another CT scan at week 15, if progression, I will take Braf inhibitors combi V. I am hoping that I am a late responder. I wish everyone well in their treatments and to either be NED or become NED. I am also interested in any late responders.
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- February 7, 2017 at 1:34 pm
I have done 4 combos,.Only fatigue and rash. They did scans at zero and week 8, unfortunately I had progression to liver and lungs. ( ( previously stage 3c with intransits on left inner thigh, after clnd on 9/29)I am scheduled to have first maintenance nivo on week 12 in 10 days. They will do another CT scan at week 15, if progression, I will take Braf inhibitors combi V. I am hoping that I am a late responder. I wish everyone well in their treatments and to either be NED or become NED. I am also interested in any late responders.
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- February 7, 2017 at 1:34 pm
I have done 4 combos,.Only fatigue and rash. They did scans at zero and week 8, unfortunately I had progression to liver and lungs. ( ( previously stage 3c with intransits on left inner thigh, after clnd on 9/29)I am scheduled to have first maintenance nivo on week 12 in 10 days. They will do another CT scan at week 15, if progression, I will take Braf inhibitors combi V. I am hoping that I am a late responder. I wish everyone well in their treatments and to either be NED or become NED. I am also interested in any late responders.
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- February 7, 2017 at 4:19 pm
Did all 4 combo infusions. Scan showed shrinkage, have another scan in a few weeks. Only have had 1 single Opdivo infusion, have many more scheduled. Hoping to be a full and long term responder!
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- February 7, 2017 at 4:19 pm
Did all 4 combo infusions. Scan showed shrinkage, have another scan in a few weeks. Only have had 1 single Opdivo infusion, have many more scheduled. Hoping to be a full and long term responder!
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- February 7, 2017 at 4:19 pm
Did all 4 combo infusions. Scan showed shrinkage, have another scan in a few weeks. Only have had 1 single Opdivo infusion, have many more scheduled. Hoping to be a full and long term responder!
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- February 7, 2017 at 7:23 pm
My husband will start the combo on Thursday, I will keep you posted. He's 60, healthy, but has mets everywhere incl brain. Finished WBRT.
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- February 7, 2017 at 7:23 pm
My husband will start the combo on Thursday, I will keep you posted. He's 60, healthy, but has mets everywhere incl brain. Finished WBRT.
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- February 7, 2017 at 7:23 pm
My husband will start the combo on Thursday, I will keep you posted. He's 60, healthy, but has mets everywhere incl brain. Finished WBRT.
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- February 8, 2017 at 12:21 am
Hi Nick,
I'll try to keep this short.
In 2013 I was 29 at my stage 1 diagnosis. A year later I found a ping-pong ball sized lump in my groin. I was 20 weeks pregnant. I opted not to do any treatment, there wasn't much to do at that time, and they also decided not to have any scans with contrast because of my pregnancy. When my son was born I had a PET. Mets all over my liver, on my spine, and lots of subcutaneous tumors.
I live in rural ND so I went to Mayo Clinic (like everyone with cancer does from my area). I never saw a doctor there, only a nurse practitioner. I was prescribed traditional chemo. It was like fertilizer. I came on this board and got a ton of advice and decided to go on the Ipi + Nivo trial at M.D. Anderson in March 2015.
About 8 hours after my first infusion, a couple of my subcutaneous mets right under the skin swelled up and I got a rash. Eventually I developed horrible diarrhea, which got worse after each infusion. I only made it through 3/4 infusions and was put on high-level steroids. At my 3 month scans, all of my tumors were reduced by 95%! In November of 2015 I was declared NED. I am still well and will conclude my Opdivo infusions in 6 weeks.
Keep on keepin' on!
Ashley
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- February 8, 2017 at 12:21 am
Hi Nick,
I'll try to keep this short.
In 2013 I was 29 at my stage 1 diagnosis. A year later I found a ping-pong ball sized lump in my groin. I was 20 weeks pregnant. I opted not to do any treatment, there wasn't much to do at that time, and they also decided not to have any scans with contrast because of my pregnancy. When my son was born I had a PET. Mets all over my liver, on my spine, and lots of subcutaneous tumors.
I live in rural ND so I went to Mayo Clinic (like everyone with cancer does from my area). I never saw a doctor there, only a nurse practitioner. I was prescribed traditional chemo. It was like fertilizer. I came on this board and got a ton of advice and decided to go on the Ipi + Nivo trial at M.D. Anderson in March 2015.
About 8 hours after my first infusion, a couple of my subcutaneous mets right under the skin swelled up and I got a rash. Eventually I developed horrible diarrhea, which got worse after each infusion. I only made it through 3/4 infusions and was put on high-level steroids. At my 3 month scans, all of my tumors were reduced by 95%! In November of 2015 I was declared NED. I am still well and will conclude my Opdivo infusions in 6 weeks.
Keep on keepin' on!
Ashley
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- February 8, 2017 at 12:21 am
Hi Nick,
I'll try to keep this short.
In 2013 I was 29 at my stage 1 diagnosis. A year later I found a ping-pong ball sized lump in my groin. I was 20 weeks pregnant. I opted not to do any treatment, there wasn't much to do at that time, and they also decided not to have any scans with contrast because of my pregnancy. When my son was born I had a PET. Mets all over my liver, on my spine, and lots of subcutaneous tumors.
I live in rural ND so I went to Mayo Clinic (like everyone with cancer does from my area). I never saw a doctor there, only a nurse practitioner. I was prescribed traditional chemo. It was like fertilizer. I came on this board and got a ton of advice and decided to go on the Ipi + Nivo trial at M.D. Anderson in March 2015.
About 8 hours after my first infusion, a couple of my subcutaneous mets right under the skin swelled up and I got a rash. Eventually I developed horrible diarrhea, which got worse after each infusion. I only made it through 3/4 infusions and was put on high-level steroids. At my 3 month scans, all of my tumors were reduced by 95%! In November of 2015 I was declared NED. I am still well and will conclude my Opdivo infusions in 6 weeks.
Keep on keepin' on!
Ashley
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- February 8, 2017 at 12:32 am
I understand your desire to hear positive stories and there is nothing wrong with that! It is extremely beneficial to hear the real life stories of others – good and bad. BUT…odds are that data from clinical research that include hundreds of patients will probably be more "positive". Not just because of the greater numbers, but also because many folks who do well at any Stage of melanoma diagnosis often move away from this board (though there are a few committed souls who keep hanging around!!!). So, often you are seeing folks here who did not respond to a given treatment and are seeking more help. Additionally, if you just read through the posts, you will see many Stage IV folks who are having trouble finding an effective therapy, ie have already failed this combo…but they are unlikely to be Debbie Downers on your post. Many factors skew the "data" here..in various directions. Just something to think about. I wish you well. Celeste
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- February 8, 2017 at 12:32 am
I understand your desire to hear positive stories and there is nothing wrong with that! It is extremely beneficial to hear the real life stories of others – good and bad. BUT…odds are that data from clinical research that include hundreds of patients will probably be more "positive". Not just because of the greater numbers, but also because many folks who do well at any Stage of melanoma diagnosis often move away from this board (though there are a few committed souls who keep hanging around!!!). So, often you are seeing folks here who did not respond to a given treatment and are seeking more help. Additionally, if you just read through the posts, you will see many Stage IV folks who are having trouble finding an effective therapy, ie have already failed this combo…but they are unlikely to be Debbie Downers on your post. Many factors skew the "data" here..in various directions. Just something to think about. I wish you well. Celeste
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- February 8, 2017 at 12:32 am
I understand your desire to hear positive stories and there is nothing wrong with that! It is extremely beneficial to hear the real life stories of others – good and bad. BUT…odds are that data from clinical research that include hundreds of patients will probably be more "positive". Not just because of the greater numbers, but also because many folks who do well at any Stage of melanoma diagnosis often move away from this board (though there are a few committed souls who keep hanging around!!!). So, often you are seeing folks here who did not respond to a given treatment and are seeking more help. Additionally, if you just read through the posts, you will see many Stage IV folks who are having trouble finding an effective therapy, ie have already failed this combo…but they are unlikely to be Debbie Downers on your post. Many factors skew the "data" here..in various directions. Just something to think about. I wish you well. Celeste
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- February 9, 2017 at 12:50 am
Hi Celeste,
You are so right regarding possible bias. I saw Nicks post. But hesitated to reply as my results so far are discouraging . 3rd dose of combo held due to liver bloods being high, 6 weeks steroids, 12 week scan showed possible pseudo progression liver, new mets lung, skull, spine,pelvis. Ref scan was 5 weeks before start of combo so some of this could be from then. Next scan due next month. Ldh doubled from start of combo…so increasingly scared. Liver ast and alt up again after dose 3… Might get 4 on Monday.. given lower dose of pred this time but need to be grade1 irae for this to happen. On the optimistic side.. Am developing halo nevi, started with normal ldh and think mild vitiligo elsewhere. Scared and confused…but one day at a time..could just do to get a lucky break at some point but at least the nausea has now gone. Might be a delayed response.. Here is hoping but Braf wild type and drugs seem to have bigger job to do at each scan.
Am aware that 40% or so do not respond to combo but am trying to stay positive and hang on in there. It is tough to deal with…both mind and body but there is still hope of a response..just saying not all combo stories are quick responses and so positive although would love that to be the case for us all dealing with this horrible disease.
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- February 9, 2017 at 12:50 am
Hi Celeste,
You are so right regarding possible bias. I saw Nicks post. But hesitated to reply as my results so far are discouraging . 3rd dose of combo held due to liver bloods being high, 6 weeks steroids, 12 week scan showed possible pseudo progression liver, new mets lung, skull, spine,pelvis. Ref scan was 5 weeks before start of combo so some of this could be from then. Next scan due next month. Ldh doubled from start of combo…so increasingly scared. Liver ast and alt up again after dose 3… Might get 4 on Monday.. given lower dose of pred this time but need to be grade1 irae for this to happen. On the optimistic side.. Am developing halo nevi, started with normal ldh and think mild vitiligo elsewhere. Scared and confused…but one day at a time..could just do to get a lucky break at some point but at least the nausea has now gone. Might be a delayed response.. Here is hoping but Braf wild type and drugs seem to have bigger job to do at each scan.
Am aware that 40% or so do not respond to combo but am trying to stay positive and hang on in there. It is tough to deal with…both mind and body but there is still hope of a response..just saying not all combo stories are quick responses and so positive although would love that to be the case for us all dealing with this horrible disease.
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- February 9, 2017 at 12:50 am
Hi Celeste,
You are so right regarding possible bias. I saw Nicks post. But hesitated to reply as my results so far are discouraging . 3rd dose of combo held due to liver bloods being high, 6 weeks steroids, 12 week scan showed possible pseudo progression liver, new mets lung, skull, spine,pelvis. Ref scan was 5 weeks before start of combo so some of this could be from then. Next scan due next month. Ldh doubled from start of combo…so increasingly scared. Liver ast and alt up again after dose 3… Might get 4 on Monday.. given lower dose of pred this time but need to be grade1 irae for this to happen. On the optimistic side.. Am developing halo nevi, started with normal ldh and think mild vitiligo elsewhere. Scared and confused…but one day at a time..could just do to get a lucky break at some point but at least the nausea has now gone. Might be a delayed response.. Here is hoping but Braf wild type and drugs seem to have bigger job to do at each scan.
Am aware that 40% or so do not respond to combo but am trying to stay positive and hang on in there. It is tough to deal with…both mind and body but there is still hope of a response..just saying not all combo stories are quick responses and so positive although would love that to be the case for us all dealing with this horrible disease.
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- February 8, 2017 at 3:55 am
Diagnosed may 2016. Started up IPi/nivo in June. Got through 3 doses when pituary inflamed. Had to go on prednisone to shrink it and stop dual meds. 12 week scans showed no cancer but all my hair on my body and head is white (small sacrifice) Have been on nivo maintenance since November. Had one questionable spot on scan in January so I'm having another in two weeks. Fingers crossed the spot on the January scans was something other than cancer
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- September 3, 2018 at 1:23 am
Hoping your scan came back clear in January. My husband recieved 2/4 Ipi Nivo combo and then went straight in to Just Nivo maintenance as he had an intestinal intussusception caused by a tumor and the oncologist was concerned about ripping a hole in his intestinal wall, as Ipi causes the walls to thin. He had 6 solo Nivo infusions and has now been on a break for 8 weeks and has been told we will reassess in another 6 weeks. He has been in the hosytoo frequently for adverse events involving his lungs, skin, fevers, vomiting and such. I am just wondering how long your break from treatment was. August to November? They did end up restarting you? -
- October 21, 2018 at 10:27 pm
My husband has spots of white hair appear when his hair started to grow back in after brain radiation. I have often wondered if they are vitiligo as his oncologist suspects or if it was caused from the radiation itself. It’s not all white and it has not affected his skin or any other hair like his eyebrows or lashes. Did yours spread rapidly? I do so hope your recent scan came back with good news again? To be cancer free 12 weeks in is an amazing feat.
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- February 8, 2017 at 3:55 am
Diagnosed may 2016. Started up IPi/nivo in June. Got through 3 doses when pituary inflamed. Had to go on prednisone to shrink it and stop dual meds. 12 week scans showed no cancer but all my hair on my body and head is white (small sacrifice) Have been on nivo maintenance since November. Had one questionable spot on scan in January so I'm having another in two weeks. Fingers crossed the spot on the January scans was something other than cancer
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- February 8, 2017 at 3:55 am
Diagnosed may 2016. Started up IPi/nivo in June. Got through 3 doses when pituary inflamed. Had to go on prednisone to shrink it and stop dual meds. 12 week scans showed no cancer but all my hair on my body and head is white (small sacrifice) Have been on nivo maintenance since November. Had one questionable spot on scan in January so I'm having another in two weeks. Fingers crossed the spot on the January scans was something other than cancer
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- February 8, 2017 at 7:58 pm
Nick, as you know, I've had a good run on ipi/nivo since January 2016 (after having progressed on other treatments). As I recently posted, I've suspended treatment since early December 2016 due to good PET results and some side effects. I have ongoing discussions with the team at UPenn about whether to stay in suspension mode or restart nivo.
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- February 8, 2017 at 7:58 pm
Nick, as you know, I've had a good run on ipi/nivo since January 2016 (after having progressed on other treatments). As I recently posted, I've suspended treatment since early December 2016 due to good PET results and some side effects. I have ongoing discussions with the team at UPenn about whether to stay in suspension mode or restart nivo.
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- October 21, 2018 at 10:35 pm
Hi Mat! I hope you are still well enough to be in “suspension mode”? I’m happy to read your comment as I have not come across anyone who’s treatment was delayed for more than a few weeks. My husband has not had an infusion since the beginning of July, almost 4 months. His oncologist plan is to send him for a scan and if their is shrinkage or even stability in the disease she will keep him off (he has had pretty severe side effects) until if or most likely when disease appears to progress again.
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- February 8, 2017 at 7:58 pm
Nick, as you know, I've had a good run on ipi/nivo since January 2016 (after having progressed on other treatments). As I recently posted, I've suspended treatment since early December 2016 due to good PET results and some side effects. I have ongoing discussions with the team at UPenn about whether to stay in suspension mode or restart nivo.
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- September 3, 2018 at 1:28 am
Looking for any info on anyone who has suspended Ipi/Nivo treatment and then restarted? What was your longest break? My husband has gone 8 weeks now because of adverse events and we have been told we won’t reassess restarting for another 6 weeks. 14 weeks seems like a long time. We have had great difficulty in tapering off of the steriods.-
- September 14, 2018 at 11:12 pm
It was 9 weeks between my first and second ipi/nivo immunotherapy treatments. After my first ipi/nivo treatment I had very bad diarrhea and lost too much weight. I received just nivo in 3 weeks and in 6 weeks. I received my 3rd and 4th ipi/nivo treatments in 3 weeks and 6 weeks after the 2nd.
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- September 18, 2018 at 3:33 pm
Thank you for the response Edwin. I feel a little better now. We had to quit the Ipi/Nivo combination after the second dose and went on to just Nivo maintenance but we have never before had to take a break. There was a point in May 2018 when he had been in the hospital for 8 days because of adverse events and still they shipped him off to the cancer center to get his infusion. Taking a break and now seeing the return of myeloid cells in his blood reports has had me very tightly wound.are you still receiving the Nivo at this time? -
- September 18, 2018 at 10:07 pm
I didn’t see your second post at first (the one I’m responding to now), and apologize for not taking it into consideration. Clearly your husband’s side effects were far more serious than my husband’s. Hang in there – this is such tough junk to deal with.
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- September 18, 2018 at 10:07 pm
I didn’t see your second post at first (the one I’m responding to now), and apologize for not taking it into consideration. Clearly your husband’s side effects were far more serious than my husband’s. Hang in there – this is such tough junk to deal with.
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- September 18, 2018 at 6:09 pm
My husband is on a nivo or nivo/ipi study and had to suspend (postpone) two infusions (four weeks) due to adverse gut side effects. He was treated with prednisone and restarted infusions when still tapering off the pred but at a low dose, He had a little up and down, had to go slowly, but is back on track – at least for now!
Your husband sounds like he’s had a rougher time, but the good news is once the nivo is in your system, it may jump start the immune system even if you have to suspend it.
As an adjunct to *possibly* help his gut, he also switched probiotics and started taking another supplement. Hang in there – this is such tough stuff, I know. (Major scanxiety now – scan 9/20.)
Beth
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- October 21, 2018 at 10:43 pm
Thank you for your suggestion Beth. Chris started taking probiotics right away when we started treatment though a good majority of the time he has not been well enough to keep things down. I will be sure to start him back up again. I hope your recent scan came back with good news!
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