buffcody

I'm one more of the T1Diabetes crowd.  It was diagnosed after 5 sessions of nivolumab, the first of the 5 being one that included ipi as well.  I'm almost 2 years into it as a part of my life.  I showed up NED just about a year ago and have stayed that way since.  I sure don't enjoy having to measure my sugar 4 times a day minimum and shooting up with insulin at least that many times daily, but NED beats the inconvenience and the aggravation.  I was only the second person at the University of Michigan Health Center to be diagnosed as a result of nivo as a type 1 diabetic.  Not sure what the number is today.

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

https://nashvegasmom2012.wordpress.com/

Frank 

This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

https://nashvegasmom2012.wordpress.com/

Frank 

This is a link to a blog written by Amy Willett whom members of this group may remember from over a year go.  Amy not only waged a brave war against her Stage IV melanoma, but she shared her journey, her successes and failures, her deep faith and her wondrous writing ability and her deep faity with all on her blog, nashvegasmom, for five years before passing away a little more than a year ago.  I had the great privilege of knowing Amy from this site, and we kept up a regular email exchange for over a year.  Amy did have melanoma in the heart. The first discovery of it is described in this blog dating to 2012.  Unfortunately, it's development did play a major role in the melanoma progression.  I hope this is not the case when any of you.  

I don't know what the access is to those of you who are not "friends" of hers on Facebook, but it is still a pleasure for me to see pictures of this courageous, loving woman and her family

https://nashvegasmom2012.wordpress.com/

Frank 

Could you describe the "fading of skin spots"?

Could you describe the "fading of skin spots"?

Could you describe the "fading of skin spots"?

I like almost all the ideas for change.  Primarily, because so much of what I am interested in is Stage IV focused.  I am Stage IV.  I also prefer MIF because I can easily determine what I have already read.  I may want to read it again, and I easily can, but it does save me time and over taxation of my memory.  It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me.  I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.   

Frank

I like almost all the ideas for change.  Primarily, because so much of what I am interested in is Stage IV focused.  I am Stage IV.  I also prefer MIF because I can easily determine what I have already read.  I may want to read it again, and I easily can, but it does save me time and over taxation of my memory.  It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me.  I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.   

Frank

I like almost all the ideas for change.  Primarily, because so much of what I am interested in is Stage IV focused.  I am Stage IV.  I also prefer MIF because I can easily determine what I have already read.  I may want to read it again, and I easily can, but it does save me time and over taxation of my memory.  It would get me to return to being a regular visitor/contributor to this Forum if anyone may have missed me.  I'm not NED yet, but I'm doing quite well with only one known tumor, which is not bothering me, at Month 39 since Stage IV diagnosis and no TIL, anti-BRAF, anti PD1, IL-2 yet.   

Frank

Rick,

You never know which forum I am going to show up on.

  It might be worth your while to watch the webinar on the other site about brain radiation, specifically on SRS (gamma knife).  It discusses the SRS procedure being used on considerably more sites than your wife would need.  There may be other reasons for adopting whole brain radiation, but the gamma knife procedure can be used, all other things being equal, on many sites.  It may depend on specific cancer center policies of a limit on individual tumors to be radiated.  So seeking out a second opinion from another center might be something to be done before deciding on whole brain radiation.

 I have known people for whom whole brain radiation has been very successful and has not caused unfortunate side effects, but these can happen.  I am sure for some people there is no real option.  For others there is, and figuring that out for your wife will be a joint project for the two of you and the "experts," who may have varying opinions.  Good luck on your vital research.

Frank

Rick,

You never know which forum I am going to show up on.

  It might be worth your while to watch the webinar on the other site about brain radiation, specifically on SRS (gamma knife).  It discusses the SRS procedure being used on considerably more sites than your wife would need.  There may be other reasons for adopting whole brain radiation, but the gamma knife procedure can be used, all other things being equal, on many sites.  It may depend on specific cancer center policies of a limit on individual tumors to be radiated.  So seeking out a second opinion from another center might be something to be done before deciding on whole brain radiation.

 I have known people for whom whole brain radiation has been very successful and has not caused unfortunate side effects, but these can happen.  I am sure for some people there is no real option.  For others there is, and figuring that out for your wife will be a joint project for the two of you and the "experts," who may have varying opinions.  Good luck on your vital research.

Frank