Yervoy & side effects

I'm really not sure why everyone seems to think if there's no side effects it's not working. There's no published evidence anywhere that connects side effects (either their presence or severity) to responses. Everyone responds differently to all of the immunotherapies- some people get many and severe side effects, some people have few to none. As my doctors told me- if you're not having side effects… BE HAPPY. It has nothing to do with whether or not you'll get a response; you could just as easily have miserable side effects and no response.

They're constantly trying to find correlations between side effects or various tumor markers and response rates, but so far there's really nothing reliable so I wouldn't worry about it. Wait for your follow up scans and/or monitor any subQ masses you have and remember that Yervoy can take a while to show results and some progression can happen throughout treatment only to get a good response at some time after your last dose. 

I finished Yervoy in mid August and it wasn't until after my last dose that I started getting a response. 3 weeks after my last dose my doctor did a "new baseline" scan which showed a fair amount of progression from my pre-treatment scan (and made it worry that it wasn't going to work), but I just had a follow up last week showing improvement. 

As far as side effects go I had brain radiation at the same time, so I'm not really sure what side effects were from which therapy. I can say that I didn't really notice anything for at least the first 2 doses. The 3rd dose corresponded with the end of radiation and I was hit with some significant nasea, but that may well have been from the radiation. I also had some diarrhea and fatigue, but again can't rule out the radiation as the cause for those.

Try to relax and enjoy not having side effects- it really is ok

I'm really not sure why everyone seems to think if there's no side effects it's not working. There's no published evidence anywhere that connects side effects (either their presence or severity) to responses. Everyone responds differently to all of the immunotherapies- some people get many and severe side effects, some people have few to none. As my doctors told me- if you're not having side effects… BE HAPPY. It has nothing to do with whether or not you'll get a response; you could just as easily have miserable side effects and no response.

They're constantly trying to find correlations between side effects or various tumor markers and response rates, but so far there's really nothing reliable so I wouldn't worry about it. Wait for your follow up scans and/or monitor any subQ masses you have and remember that Yervoy can take a while to show results and some progression can happen throughout treatment only to get a good response at some time after your last dose. 

I finished Yervoy in mid August and it wasn't until after my last dose that I started getting a response. 3 weeks after my last dose my doctor did a "new baseline" scan which showed a fair amount of progression from my pre-treatment scan (and made it worry that it wasn't going to work), but I just had a follow up last week showing improvement. 

As far as side effects go I had brain radiation at the same time, so I'm not really sure what side effects were from which therapy. I can say that I didn't really notice anything for at least the first 2 doses. The 3rd dose corresponded with the end of radiation and I was hit with some significant nasea, but that may well have been from the radiation. I also had some diarrhea and fatigue, but again can't rule out the radiation as the cause for those.

Try to relax and enjoy not having side effects- it really is ok

I'm really not sure why everyone seems to think if there's no side effects it's not working. There's no published evidence anywhere that connects side effects (either their presence or severity) to responses. Everyone responds differently to all of the immunotherapies- some people get many and severe side effects, some people have few to none. As my doctors told me- if you're not having side effects… BE HAPPY. It has nothing to do with whether or not you'll get a response; you could just as easily have miserable side effects and no response.

They're constantly trying to find correlations between side effects or various tumor markers and response rates, but so far there's really nothing reliable so I wouldn't worry about it. Wait for your follow up scans and/or monitor any subQ masses you have and remember that Yervoy can take a while to show results and some progression can happen throughout treatment only to get a good response at some time after your last dose. 

I finished Yervoy in mid August and it wasn't until after my last dose that I started getting a response. 3 weeks after my last dose my doctor did a "new baseline" scan which showed a fair amount of progression from my pre-treatment scan (and made it worry that it wasn't going to work), but I just had a follow up last week showing improvement. 

As far as side effects go I had brain radiation at the same time, so I'm not really sure what side effects were from which therapy. I can say that I didn't really notice anything for at least the first 2 doses. The 3rd dose corresponded with the end of radiation and I was hit with some significant nasea, but that may well have been from the radiation. I also had some diarrhea and fatigue, but again can't rule out the radiation as the cause for those.

Try to relax and enjoy not having side effects- it really is ok

Hello,

You don't say what stage you are or by posting anonymous it is hard to see anything about your melanoma  background.

My husband was Stage IV with tumors in his lungs, liver and an unresectable on his cervical spine at C1-C2 area.  His LDH was 1200 before starting the Yervoy and he had 3 sub q's.  He started the clinical trial in March of 2011 and had the initial 4 doses in the first 12 weeks and he has had a dose every 12 weeks since.  His clinical trial was the 10mg/kg and he also has been taking self injections of GM-CSF 14 days on and 7 days off.  He became NED last September and is going off of the clinical trial in a week because he wants to get off of the drugs since he is NED.  We watched the sub q's actually disappear and we watched the LDH go down to within the normal range.  He had some fatigue, rash, itching and his body is no longer making prednisone so he takes 7.5 mg a day.  He developed white eye brows and his beard turned quite white as well.  He lost pigmentation on his face and neck.  His doctor became thrilled when he started getting the white hair.  But he had no bad side effects.  If you wish to read more check out his profile.  We took pictures of the sub q's when he first started and then compared them to a nickel which was in the picture.  

Hope this helps.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

You don't say what stage you are or by posting anonymous it is hard to see anything about your melanoma  background.

My husband was Stage IV with tumors in his lungs, liver and an unresectable on his cervical spine at C1-C2 area.  His LDH was 1200 before starting the Yervoy and he had 3 sub q's.  He started the clinical trial in March of 2011 and had the initial 4 doses in the first 12 weeks and he has had a dose every 12 weeks since.  His clinical trial was the 10mg/kg and he also has been taking self injections of GM-CSF 14 days on and 7 days off.  He became NED last September and is going off of the clinical trial in a week because he wants to get off of the drugs since he is NED.  We watched the sub q's actually disappear and we watched the LDH go down to within the normal range.  He had some fatigue, rash, itching and his body is no longer making prednisone so he takes 7.5 mg a day.  He developed white eye brows and his beard turned quite white as well.  He lost pigmentation on his face and neck.  His doctor became thrilled when he started getting the white hair.  But he had no bad side effects.  If you wish to read more check out his profile.  We took pictures of the sub q's when he first started and then compared them to a nickel which was in the picture.  

Hope this helps.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

You don't say what stage you are or by posting anonymous it is hard to see anything about your melanoma  background.

My husband was Stage IV with tumors in his lungs, liver and an unresectable on his cervical spine at C1-C2 area.  His LDH was 1200 before starting the Yervoy and he had 3 sub q's.  He started the clinical trial in March of 2011 and had the initial 4 doses in the first 12 weeks and he has had a dose every 12 weeks since.  His clinical trial was the 10mg/kg and he also has been taking self injections of GM-CSF 14 days on and 7 days off.  He became NED last September and is going off of the clinical trial in a week because he wants to get off of the drugs since he is NED.  We watched the sub q's actually disappear and we watched the LDH go down to within the normal range.  He had some fatigue, rash, itching and his body is no longer making prednisone so he takes 7.5 mg a day.  He developed white eye brows and his beard turned quite white as well.  He lost pigmentation on his face and neck.  His doctor became thrilled when he started getting the white hair.  But he had no bad side effects.  If you wish to read more check out his profile.  We took pictures of the sub q's when he first started and then compared them to a nickel which was in the picture.  

Hope this helps.

Judy (loving wife of Gene Stage IV and now NED)

I read a review article recently that I found very interesting and might help put you at ease a little. I've been trying to find it so I could referene it, but I seem to have lost it somewhere… oh well.

The study came out of Europe, but they analyzed all the published research on Yervoy and while I can't remember all of conclusions there were a few that I found very interesting:

1) There was no correlation between presence/severity of side effects and likelyhood of response (this includes specific side effects, like skin reactions). Responders and non-responders were equally likely to have side effects (or not have them).

2) Interestingly (and I though a bit surprising), the higher 10mg/kg dose did not change the percentage of people who got a response compared to the 3 mg/kg dose. The higher dose is associated with more/more severe side effects.

3) The use of "maintenance doses" (extra doses at regular intervals after the initial 4 doses) did not increase the percentage of responders, the degree of response (partial vs complete), or the duration of response. I also found this interesting and a little surprising.

4) Yeroy has been studied long enough at this point that they are finding that the durability of responses to Yervoy rival those possible with IL2. Previously many thought a response from Yervoy would only last about 3-5 years at best but this study found that many people have much longer remissions and like those that get a good response from IL2 it can very much resemble a cure. Sounds good to me.

I know it's hard to wait and see what's going to happen- I struggle with it a lot myself and I think we all have this notion in our head that cancer treatment is supposed to be miserable and that's how you know it's working. That idea doesn't really hold true with the newer immunotherapies though, and remember- with both IL2 and chemo- there can be miserable side effects, but that doesn't mean it IS working either.

I read a review article recently that I found very interesting and might help put you at ease a little. I've been trying to find it so I could referene it, but I seem to have lost it somewhere… oh well.

The study came out of Europe, but they analyzed all the published research on Yervoy and while I can't remember all of conclusions there were a few that I found very interesting:

1) There was no correlation between presence/severity of side effects and likelyhood of response (this includes specific side effects, like skin reactions). Responders and non-responders were equally likely to have side effects (or not have them).

2) Interestingly (and I though a bit surprising), the higher 10mg/kg dose did not change the percentage of people who got a response compared to the 3 mg/kg dose. The higher dose is associated with more/more severe side effects.

3) The use of "maintenance doses" (extra doses at regular intervals after the initial 4 doses) did not increase the percentage of responders, the degree of response (partial vs complete), or the duration of response. I also found this interesting and a little surprising.

4) Yeroy has been studied long enough at this point that they are finding that the durability of responses to Yervoy rival those possible with IL2. Previously many thought a response from Yervoy would only last about 3-5 years at best but this study found that many people have much longer remissions and like those that get a good response from IL2 it can very much resemble a cure. Sounds good to me.

I know it's hard to wait and see what's going to happen- I struggle with it a lot myself and I think we all have this notion in our head that cancer treatment is supposed to be miserable and that's how you know it's working. That idea doesn't really hold true with the newer immunotherapies though, and remember- with both IL2 and chemo- there can be miserable side effects, but that doesn't mean it IS working either.

I read a review article recently that I found very interesting and might help put you at ease a little. I've been trying to find it so I could referene it, but I seem to have lost it somewhere… oh well.

The study came out of Europe, but they analyzed all the published research on Yervoy and while I can't remember all of conclusions there were a few that I found very interesting:

1) There was no correlation between presence/severity of side effects and likelyhood of response (this includes specific side effects, like skin reactions). Responders and non-responders were equally likely to have side effects (or not have them).

2) Interestingly (and I though a bit surprising), the higher 10mg/kg dose did not change the percentage of people who got a response compared to the 3 mg/kg dose. The higher dose is associated with more/more severe side effects.

3) The use of "maintenance doses" (extra doses at regular intervals after the initial 4 doses) did not increase the percentage of responders, the degree of response (partial vs complete), or the duration of response. I also found this interesting and a little surprising.

4) Yeroy has been studied long enough at this point that they are finding that the durability of responses to Yervoy rival those possible with IL2. Previously many thought a response from Yervoy would only last about 3-5 years at best but this study found that many people have much longer remissions and like those that get a good response from IL2 it can very much resemble a cure. Sounds good to me.

I know it's hard to wait and see what's going to happen- I struggle with it a lot myself and I think we all have this notion in our head that cancer treatment is supposed to be miserable and that's how you know it's working. That idea doesn't really hold true with the newer immunotherapies though, and remember- with both IL2 and chemo- there can be miserable side effects, but that doesn't mean it IS working either.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been succesfully resected.  NED at this time.  My left paroitd gland and the lymph nodes on the left s8de of my neck were removed.  The only eidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infunsion went okay. secon  don Aughst 20th , also fine.  September 6th diarrhhea started.  When  i wenr for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receivce the 3rd infusion.  I was given a course of prednisone.  The following weeking I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Successs this time. Wednesday I had a colonoscopy.  I wa told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reductuin of prednisone.  Starting each time w8th 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflamatory ulcerated colitis.  I received 9 transfusions to repalce the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steriods intervenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hyoptension and was give another steroid to mimic what my adrenal gloands should have been producing so I could go frm lying down to sittins to standing without passing out. A sygmoidscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for isnructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanetly.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurrs I son't know.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been succesfully resected.  NED at this time.  My left paroitd gland and the lymph nodes on the left s8de of my neck were removed.  The only eidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infunsion went okay. secon  don Aughst 20th , also fine.  September 6th diarrhhea started.  When  i wenr for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receivce the 3rd infusion.  I was given a course of prednisone.  The following weeking I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Successs this time. Wednesday I had a colonoscopy.  I wa told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reductuin of prednisone.  Starting each time w8th 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflamatory ulcerated colitis.  I received 9 transfusions to repalce the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steriods intervenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hyoptension and was give another steroid to mimic what my adrenal gloands should have been producing so I could go frm lying down to sittins to standing without passing out. A sygmoidscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for isnructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanetly.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurrs I son't know.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been succesfully resected.  NED at this time.  My left paroitd gland and the lymph nodes on the left s8de of my neck were removed.  The only eidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infunsion went okay. secon  don Aughst 20th , also fine.  September 6th diarrhhea started.  When  i wenr for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receivce the 3rd infusion.  I was given a course of prednisone.  The following weeking I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Successs this time. Wednesday I had a colonoscopy.  I wa told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reductuin of prednisone.  Starting each time w8th 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflamatory ulcerated colitis.  I received 9 transfusions to repalce the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steriods intervenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hyoptension and was give another steroid to mimic what my adrenal gloands should have been producing so I could go frm lying down to sittins to standing without passing out. A sygmoidscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for isnructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanetly.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurrs I son't know.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been successfully resected.  NED at this time.  My left parotid gland and the lymph nodes on the left side of my neck were removed.  The only evidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infusion went okay. second  don August 20th , also fine.  September 6th diarrhea started.  When  i went for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receive the 3rd infusion.  I was given a course of prednisone.  The following weekend I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Success this time. Wednesday I had a colonoscopy.  I was told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reduction of prednisone.  Starting each time with 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflammatory ulcerated colitis.  I received 9 transfusions to replace the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steroids intravenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hypotension and was give another steroid to mimic what my adrenal glands should have been producing so I could go from lying down to sitting to standing without passing out. A sigmoidoscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for instructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanently.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurs I don't know.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been successfully resected.  NED at this time.  My left parotid gland and the lymph nodes on the left side of my neck were removed.  The only evidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infusion went okay. second  don August 20th , also fine.  September 6th diarrhea started.  When  i went for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receive the 3rd infusion.  I was given a course of prednisone.  The following weekend I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Success this time. Wednesday I had a colonoscopy.  I was told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reduction of prednisone.  Starting each time with 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflammatory ulcerated colitis.  I received 9 transfusions to replace the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steroids intravenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hypotension and was give another steroid to mimic what my adrenal glands should have been producing so I could go from lying down to sitting to standing without passing out. A sigmoidoscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for instructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanently.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurs I don't know.

July 30, 2013 I started Clinical Trial ECOG 1609 comparing — persons with stage III melanoma that had been successfully resected.  NED at this time.  My left parotid gland and the lymph nodes on the left side of my neck were removed.  The only evidence of melanoma was in the :peach  pit tumor on/in my parotid.  I was in arm C 3mg/K body weight ipilimumab (yervoy)  Arm A was 10mg/K  Arm B was Interferon. First infusion went okay. second  don August 20th , also fine.  September 6th diarrhea started.  When  i went for my third infusion on September 10th, I was told good news bad news.Bad news diarrhea..  Good news my immune system is responding.  I did not receive the 3rd infusion.  I was given a course of prednisone.  The following weekend I had a temperature of 101.7 F.  I went to the ER 12;30am Sunday. Sept 15th  Unfortunately, I was given food Sunday and Monday.  Monday evening I was presented with a gallon of GoLytely.  I was unsuccessful.  Same again Tuesday. Success this time. Wednesday I had a colonoscopy.  I was told that I had colitis.  Thursday  Oct 19th, I was sent home with a more rigerous course of prednisone..The diarrhea persisted  but did slow down.  And then reoccurred as the prednisone went below 60mg.  When I went back Oct 1st the date for the 4th infusion, I was started on a more gradual reduction of prednisone.  Starting each time with 100mg but reducing the amount over a longer period of time

The night of October 2-3 I began to bleed copiously from my rectum.  I was admitted to the hospital Thursday, Oct 3rd. I was discharged Saturday evening, October 26th.  I have inflammatory ulcerated colitis.  I received 9 transfusions to replace the blood lost, two infusions of infliximab (Remicade) to tame my immune system, massive steroids intravenously, electrolytes. you name it.  As a result of the massive amounts of steroids, my adrenal glands took a time out.  I had orthostatic hypotension and was give another steroid to mimic what my adrenal glands should have been producing so I could go from lying down to sitting to standing without passing out. A sigmoidoscopy showed that my ipi induced colitis was still present but the bleeding had stopped. 

I am at home now, currently  on 100mg prednisone/day.  The reduction hasn't started.  I'm waiting for instructions for the gastroenterologist.  I will have to see an endocrinologist about my adrenal and pituitary glands.  Although I will not receive any more Yervoy, I'm still part of the clinical trial and will monitored. CT scan this Tuesday Nov 5th.   For a while removal of my entire colon was a consideration.  I'm very thankful that did not happen.  My recovery from the colitis, I was told it can be reversed,  will be slow.  Possibly a year.  Or I may have ulcerative colitis permanently.  My immune response was unexpected.  I'm 71 years old.  All the more interesting, the primary melanoma was never found.  The first indication that  I have metastic melanoma was the peach pit on/in my parotid.  What will be done to me if/when the melanoma recurs I don't know.

I was really scared about this, too. I wish we had more control over the whole process; I think it makes us read meaning into everything!

(as others have noted, there was one study that linked grade III/IV adverse effects with Ipi response, but it has since been disproven)

My advice to you is that the side effects may still be on their way! — my diarrhea arrived like a thunderclap two weeks after the fourth dose. And I know of people who responded in a deep & dramatic way without side effects at all. 

Hang in there…

I was really scared about this, too. I wish we had more control over the whole process; I think it makes us read meaning into everything!

(as others have noted, there was one study that linked grade III/IV adverse effects with Ipi response, but it has since been disproven)

My advice to you is that the side effects may still be on their way! — my diarrhea arrived like a thunderclap two weeks after the fourth dose. And I know of people who responded in a deep & dramatic way without side effects at all. 

Hang in there…

I was really scared about this, too. I wish we had more control over the whole process; I think it makes us read meaning into everything!

(as others have noted, there was one study that linked grade III/IV adverse effects with Ipi response, but it has since been disproven)

My advice to you is that the side effects may still be on their way! — my diarrhea arrived like a thunderclap two weeks after the fourth dose. And I know of people who responded in a deep & dramatic way without side effects at all. 

Hang in there…