adrenal insufficiency

Hi Chalroad5, Celeste posted a link to dr. Weber and Dr. Agarwala on OMedlive webcast a couple of months ago that talks about side effects common and not some common with Immunotherapy treatments and targeted therapy drugs. May be you can find it if you go to her blog or she might read this and give you the link. When it came to endocrine type issue they talk about how most Oncologist have had to become endocrineologists (not sure if spelling is right on that one). I wouldn't want to guess on your situation with the adrenal function but if I remember correctly it can go either way as far as going back to normal or not. Glad to here that you have had good scan results!!!! Best Wishes!!!!Ed

Hi Chalroad5, Celeste posted a link to dr. Weber and Dr. Agarwala on OMedlive webcast a couple of months ago that talks about side effects common and not some common with Immunotherapy treatments and targeted therapy drugs. May be you can find it if you go to her blog or she might read this and give you the link. When it came to endocrine type issue they talk about how most Oncologist have had to become endocrineologists (not sure if spelling is right on that one). I wouldn't want to guess on your situation with the adrenal function but if I remember correctly it can go either way as far as going back to normal or not. Glad to here that you have had good scan results!!!! Best Wishes!!!!Ed

Hi Chalroad5, Celeste posted a link to dr. Weber and Dr. Agarwala on OMedlive webcast a couple of months ago that talks about side effects common and not some common with Immunotherapy treatments and targeted therapy drugs. May be you can find it if you go to her blog or she might read this and give you the link. When it came to endocrine type issue they talk about how most Oncologist have had to become endocrineologists (not sure if spelling is right on that one). I wouldn't want to guess on your situation with the adrenal function but if I remember correctly it can go either way as far as going back to normal or not. Glad to here that you have had good scan results!!!! Best Wishes!!!!Ed

Hi,

From the bit I know- Ipi can cause hypophysitis- inflammation and break down of pituitary function- causing  loss of cortisol production , in the majority of cases permanently unless caught very early and treated appropriately. Presenting symptoms headaches and abnormal pituitary appearance on scans. 

You ended up on high dose steroids to treat other side effects- this affects the bodys own feedback loop- as steroids/cortisol being provided regardless of feedback so adrenals shut down.

You have been tapered- so that in theory anyway- you don't have too hard a landing coming off the steroids.

But sounds like you are having a rough time and your own system is not responding fast enough to keep you feeling balanced. Would suggest you go back and talk to the docs again . The problem is if you keep supplementing with steroids your own adrenal function may never bounce back- but some docs seem to use a one day on steroid one day off- to keep the feedback loop in play whilst reducing the stress on you and your joints etc.

This explains a bit more http://www.aafp.org/afp/1998/0801/p443.html and would let you work out if your taper was a bit fast-longer you are on the steroids – slower the taper as a rule of thumb so no quick answer to your last question.

Bit of a crash course in Melanoma for me over the last  12months and always something new to watchout for or understand.

Hope you soon feel back to normal- in normal range is no guarantee of that for sure..

Best wishes

Deb

Hi,

From the bit I know- Ipi can cause hypophysitis- inflammation and break down of pituitary function- causing  loss of cortisol production , in the majority of cases permanently unless caught very early and treated appropriately. Presenting symptoms headaches and abnormal pituitary appearance on scans. 

You ended up on high dose steroids to treat other side effects- this affects the bodys own feedback loop- as steroids/cortisol being provided regardless of feedback so adrenals shut down.

You have been tapered- so that in theory anyway- you don't have too hard a landing coming off the steroids.

But sounds like you are having a rough time and your own system is not responding fast enough to keep you feeling balanced. Would suggest you go back and talk to the docs again . The problem is if you keep supplementing with steroids your own adrenal function may never bounce back- but some docs seem to use a one day on steroid one day off- to keep the feedback loop in play whilst reducing the stress on you and your joints etc.

This explains a bit more http://www.aafp.org/afp/1998/0801/p443.html and would let you work out if your taper was a bit fast-longer you are on the steroids – slower the taper as a rule of thumb so no quick answer to your last question.

Bit of a crash course in Melanoma for me over the last  12months and always something new to watchout for or understand.

Hope you soon feel back to normal- in normal range is no guarantee of that for sure..

Best wishes

Deb

Hi,

From the bit I know- Ipi can cause hypophysitis- inflammation and break down of pituitary function- causing  loss of cortisol production , in the majority of cases permanently unless caught very early and treated appropriately. Presenting symptoms headaches and abnormal pituitary appearance on scans. 

You ended up on high dose steroids to treat other side effects- this affects the bodys own feedback loop- as steroids/cortisol being provided regardless of feedback so adrenals shut down.

You have been tapered- so that in theory anyway- you don't have too hard a landing coming off the steroids.

But sounds like you are having a rough time and your own system is not responding fast enough to keep you feeling balanced. Would suggest you go back and talk to the docs again . The problem is if you keep supplementing with steroids your own adrenal function may never bounce back- but some docs seem to use a one day on steroid one day off- to keep the feedback loop in play whilst reducing the stress on you and your joints etc.

This explains a bit more http://www.aafp.org/afp/1998/0801/p443.html and would let you work out if your taper was a bit fast-longer you are on the steroids – slower the taper as a rule of thumb so no quick answer to your last question.

Bit of a crash course in Melanoma for me over the last  12months and always something new to watchout for or understand.

Hope you soon feel back to normal- in normal range is no guarantee of that for sure..

Best wishes

Deb

Hi Chalroad5. Like you, I had elevated liver enzymes during my Ipi/Nivo treatment. I made it through 2 infusions before having to stop treatment and go onto steroids. They started me at 60 mg and I began to taper 10 mg/week shortly after my liver started to respond. Halfway through the taper, I started to have an adverse reaction to the steroids as I felt like I was jumping out of my skin. Anxiety, shaking, sweating…it was awful. All in all, I was only on steroids for about 2 months and haven't had a problem transitioning off of them.

As you stated, the longer you're on steroids, the harder it is to wean as your adrenal glands stop producing cortisol. Since you were on prednisone for an extended period, this could definitely be happening. What does your oncologist say? Since this is really an endocrinologist's specialty, are they able to give you a referral? Immunotherapy is really so new and many oncologists are, as Ed said, becoming endocrinologists due to these types of side effects. You should definitely speak up with your healthcare team and let them know this is a problem that needs to be looked into! 

Lauren

Hi Chalroad5. Like you, I had elevated liver enzymes during my Ipi/Nivo treatment. I made it through 2 infusions before having to stop treatment and go onto steroids. They started me at 60 mg and I began to taper 10 mg/week shortly after my liver started to respond. Halfway through the taper, I started to have an adverse reaction to the steroids as I felt like I was jumping out of my skin. Anxiety, shaking, sweating…it was awful. All in all, I was only on steroids for about 2 months and haven't had a problem transitioning off of them.

As you stated, the longer you're on steroids, the harder it is to wean as your adrenal glands stop producing cortisol. Since you were on prednisone for an extended period, this could definitely be happening. What does your oncologist say? Since this is really an endocrinologist's specialty, are they able to give you a referral? Immunotherapy is really so new and many oncologists are, as Ed said, becoming endocrinologists due to these types of side effects. You should definitely speak up with your healthcare team and let them know this is a problem that needs to be looked into! 

Lauren

Hi Chalroad5. Like you, I had elevated liver enzymes during my Ipi/Nivo treatment. I made it through 2 infusions before having to stop treatment and go onto steroids. They started me at 60 mg and I began to taper 10 mg/week shortly after my liver started to respond. Halfway through the taper, I started to have an adverse reaction to the steroids as I felt like I was jumping out of my skin. Anxiety, shaking, sweating…it was awful. All in all, I was only on steroids for about 2 months and haven't had a problem transitioning off of them.

As you stated, the longer you're on steroids, the harder it is to wean as your adrenal glands stop producing cortisol. Since you were on prednisone for an extended period, this could definitely be happening. What does your oncologist say? Since this is really an endocrinologist's specialty, are they able to give you a referral? Immunotherapy is really so new and many oncologists are, as Ed said, becoming endocrinologists due to these types of side effects. You should definitely speak up with your healthcare team and let them know this is a problem that needs to be looked into! 

Lauren

I have had the same thing.  Just got good scans after being diagnosed with stage 4 back in May.

unfortunately my pituitary took the hit 1 week after my 3rd dose.  I was put on 70mg prednisone and then weaned off over the next 5 weeks.  I got down to 10mg and the hypophysits again and then put on 100mg at the end of August.  I'm being weaned slowly and praying the headaches (my symptom that the hypophysitis) doesn't come back so I can get down to 10mg next week and eventually 0 or 5mg of predinosone and go on the nivo maintenance. 

I'm not holding my breath though about getting down to 0.  From everything I have read online, 90% of those that got hit with the adrenal issues had permanent damage.  This means that it's lifelong maintenance for this as the body will never be able to produce its own cortisol.  Unforutnately, you need to come off the steroids totally and wait a certain amount of time (can be up to a year I read) to see if your pituitary starts to kick in on its own.  I'm assuming that this is probably the worst time because you aren't taking steroids to supplement the cortisol but your body isn't making it either.  

My oncologist referred me to a young endocrinologist in my area who seems to have a real handle on what these immunotherapy drugs due to the endocrine system.  I was surprised to see how young my endo is and that my oncologist wanted me to wait until she was back from vacation to see her rather than see another endo but now I know why.  This endo explained things so clearly to me and it seems these younger docs are learning about all of this while at school and have learned about immunotherapies from the get go.  

Please go see an endocrinologist that is familiar with immunotherapies and their affect on the adrenal system. Mine has managed my side affects very well (I have very few – mostly just a little weak and the usual hunger, redistribution of fat to my belly and my moon face but that's about it).  An endo will also want to manage the side affects going forward.  I had ipi side affect flare up 2 weeks ago.  my meds were upped for 3 days, side affects went away and I'm back down again.  It's nice to have an endo to contact – this isn't a cancer issue – it really is an endocrine issue.

karen

I have had the same thing.  Just got good scans after being diagnosed with stage 4 back in May.

unfortunately my pituitary took the hit 1 week after my 3rd dose.  I was put on 70mg prednisone and then weaned off over the next 5 weeks.  I got down to 10mg and the hypophysits again and then put on 100mg at the end of August.  I'm being weaned slowly and praying the headaches (my symptom that the hypophysitis) doesn't come back so I can get down to 10mg next week and eventually 0 or 5mg of predinosone and go on the nivo maintenance. 

I'm not holding my breath though about getting down to 0.  From everything I have read online, 90% of those that got hit with the adrenal issues had permanent damage.  This means that it's lifelong maintenance for this as the body will never be able to produce its own cortisol.  Unforutnately, you need to come off the steroids totally and wait a certain amount of time (can be up to a year I read) to see if your pituitary starts to kick in on its own.  I'm assuming that this is probably the worst time because you aren't taking steroids to supplement the cortisol but your body isn't making it either.  

My oncologist referred me to a young endocrinologist in my area who seems to have a real handle on what these immunotherapy drugs due to the endocrine system.  I was surprised to see how young my endo is and that my oncologist wanted me to wait until she was back from vacation to see her rather than see another endo but now I know why.  This endo explained things so clearly to me and it seems these younger docs are learning about all of this while at school and have learned about immunotherapies from the get go.  

Please go see an endocrinologist that is familiar with immunotherapies and their affect on the adrenal system. Mine has managed my side affects very well (I have very few – mostly just a little weak and the usual hunger, redistribution of fat to my belly and my moon face but that's about it).  An endo will also want to manage the side affects going forward.  I had ipi side affect flare up 2 weeks ago.  my meds were upped for 3 days, side affects went away and I'm back down again.  It's nice to have an endo to contact – this isn't a cancer issue – it really is an endocrine issue.

karen

I have had the same thing.  Just got good scans after being diagnosed with stage 4 back in May.

unfortunately my pituitary took the hit 1 week after my 3rd dose.  I was put on 70mg prednisone and then weaned off over the next 5 weeks.  I got down to 10mg and the hypophysits again and then put on 100mg at the end of August.  I'm being weaned slowly and praying the headaches (my symptom that the hypophysitis) doesn't come back so I can get down to 10mg next week and eventually 0 or 5mg of predinosone and go on the nivo maintenance. 

I'm not holding my breath though about getting down to 0.  From everything I have read online, 90% of those that got hit with the adrenal issues had permanent damage.  This means that it's lifelong maintenance for this as the body will never be able to produce its own cortisol.  Unforutnately, you need to come off the steroids totally and wait a certain amount of time (can be up to a year I read) to see if your pituitary starts to kick in on its own.  I'm assuming that this is probably the worst time because you aren't taking steroids to supplement the cortisol but your body isn't making it either.  

My oncologist referred me to a young endocrinologist in my area who seems to have a real handle on what these immunotherapy drugs due to the endocrine system.  I was surprised to see how young my endo is and that my oncologist wanted me to wait until she was back from vacation to see her rather than see another endo but now I know why.  This endo explained things so clearly to me and it seems these younger docs are learning about all of this while at school and have learned about immunotherapies from the get go.  

Please go see an endocrinologist that is familiar with immunotherapies and their affect on the adrenal system. Mine has managed my side affects very well (I have very few – mostly just a little weak and the usual hunger, redistribution of fat to my belly and my moon face but that's about it).  An endo will also want to manage the side affects going forward.  I had ipi side affect flare up 2 weeks ago.  my meds were upped for 3 days, side affects went away and I'm back down again.  It's nice to have an endo to contact – this isn't a cancer issue – it really is an endocrine issue.

karen