marysan

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

My husband has Stage 3C melanoma and had three Yervoy treatments with the last being Jan 2012. About 2 months later he became very weak, nauseated etc and we found out that he had no cortisol production, thyroid or testosterone.  He was put on replacment of all of these hormones. He had a brain MRI that confirmed hypophysitis.  He is now on .25 decadron, hydrocortisone 30 mg in am and 10 mg in pm.  We are trying to get him off the decadron and lower the hydrocortisone dose but he always feels worse and so tired.  I don't think any of the endocrinologists in the NY area have much experience with this side effect.  Any advice?  What is the desired dose of steroids?  He almost 7 months out of his last Yervoy treatment and now has what we think is a new recurrence on his leg. Surgery tomorrow. 

Does this mean the Yervoy failed? He had a totally negative PET 1 1/2 months ago.  Any advice on how to deal with the endocrine problems and side effects of terrible fatigue, some nausea etc.?

We live in the New York City area.

Jim,

Are you still on the hydrocortisone? What is your daily dose? Do you take thyroid meds and testosterone too? My husband has this problem and I want to see what others are doing. Thanks so much,

Jim,

Are you still on the hydrocortisone? What is your daily dose? Do you take thyroid meds and testosterone too? My husband has this problem and I want to see what others are doing. Thanks so much,

Jim,

Are you still on the hydrocortisone? What is your daily dose? Do you take thyroid meds and testosterone too? My husband has this problem and I want to see what others are doing. Thanks so much,

We live in New Jersey and did consult intiially with Dr. Chapman at MSK.  However, he said that most of the endocrinologists have limited experience with this issue.  I am now understanding that this is probably a permanent condition, but there is so little written about it…..and how to manage it.  I would like a second endocrine opinion from a doc that treats alot of Yervoy induced endocrinopathies and have yet to find one in my research. Any names would be most appreciated.  What is the desired dose of hydrocortisone replacement? Thanks for any help.

We live in New Jersey and did consult intiially with Dr. Chapman at MSK.  However, he said that most of the endocrinologists have limited experience with this issue.  I am now understanding that this is probably a permanent condition, but there is so little written about it…..and how to manage it.  I would like a second endocrine opinion from a doc that treats alot of Yervoy induced endocrinopathies and have yet to find one in my research. Any names would be most appreciated.  What is the desired dose of hydrocortisone replacement? Thanks for any help.

We live in New Jersey and did consult intiially with Dr. Chapman at MSK.  However, he said that most of the endocrinologists have limited experience with this issue.  I am now understanding that this is probably a permanent condition, but there is so little written about it…..and how to manage it.  I would like a second endocrine opinion from a doc that treats alot of Yervoy induced endocrinopathies and have yet to find one in my research. Any names would be most appreciated.  What is the desired dose of hydrocortisone replacement? Thanks for any help.