Hypophysitis on Keytruda?

Hey Mat,

Sorry you are dealing with that.  I never had hypophysitis though some scans I had reported enlargement of the pituitary stalk…no one ever knew what to make of that….  Anyhow, in my nivo trial two fellow ratties did develop actual hypophysitis: 

"Toxicities:  481 grade 1-5 adverse events were reported with 286 attributed to treatment.  AE distribution was similar across cohorts (#1 = 81, #2 = 104, and #3 = 101).  Most common AE's were vaccine injection site reaction (discomfort, granuloma, and/or reactive lymphadenopathy – 94% of patients), fatigue (82%), rash (55%), pruritis (42%), nausea (42%), arthralgias (42%), diarrhea (36%), headache (36%). 5 drug related grade 3-5 AE's were noted:  hypokalemia (1 in cohort 2), rash (1 in cohort 1), enteritis (1 in cohort 3), and colitis (2 in cohorts 2 and 3).  The colitis patients responded to high-dose steroids and supportive care. The patient with the grade 3 rash was re-challenged with the study drug after recovery; there was no recurrence of serious rash. Other immune-related events = grade 2 hypophysitis (2) leading to adrenal insufficiency in both patients, grade 2 thyroiditis (7) leading to primary hypothyroidism, and grade 1 pneumonitis (1) without clinical sequelae.  Adrenal insufficiency and hypothyroidism were successfully managed with hormone replacement."

Here's a link to the study report overall:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

Don't know if this helps.  Hope everything resolves as easily as possible!!!  Hang in there.  Celeste

Hey Mat,

Sorry you are dealing with that.  I never had hypophysitis though some scans I had reported enlargement of the pituitary stalk…no one ever knew what to make of that….  Anyhow, in my nivo trial two fellow ratties did develop actual hypophysitis: 

"Toxicities:  481 grade 1-5 adverse events were reported with 286 attributed to treatment.  AE distribution was similar across cohorts (#1 = 81, #2 = 104, and #3 = 101).  Most common AE's were vaccine injection site reaction (discomfort, granuloma, and/or reactive lymphadenopathy – 94% of patients), fatigue (82%), rash (55%), pruritis (42%), nausea (42%), arthralgias (42%), diarrhea (36%), headache (36%). 5 drug related grade 3-5 AE's were noted:  hypokalemia (1 in cohort 2), rash (1 in cohort 1), enteritis (1 in cohort 3), and colitis (2 in cohorts 2 and 3).  The colitis patients responded to high-dose steroids and supportive care. The patient with the grade 3 rash was re-challenged with the study drug after recovery; there was no recurrence of serious rash. Other immune-related events = grade 2 hypophysitis (2) leading to adrenal insufficiency in both patients, grade 2 thyroiditis (7) leading to primary hypothyroidism, and grade 1 pneumonitis (1) without clinical sequelae.  Adrenal insufficiency and hypothyroidism were successfully managed with hormone replacement."

Here's a link to the study report overall:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

Don't know if this helps.  Hope everything resolves as easily as possible!!!  Hang in there.  Celeste

Hey Mat,

Sorry you are dealing with that.  I never had hypophysitis though some scans I had reported enlargement of the pituitary stalk…no one ever knew what to make of that….  Anyhow, in my nivo trial two fellow ratties did develop actual hypophysitis: 

"Toxicities:  481 grade 1-5 adverse events were reported with 286 attributed to treatment.  AE distribution was similar across cohorts (#1 = 81, #2 = 104, and #3 = 101).  Most common AE's were vaccine injection site reaction (discomfort, granuloma, and/or reactive lymphadenopathy – 94% of patients), fatigue (82%), rash (55%), pruritis (42%), nausea (42%), arthralgias (42%), diarrhea (36%), headache (36%). 5 drug related grade 3-5 AE's were noted:  hypokalemia (1 in cohort 2), rash (1 in cohort 1), enteritis (1 in cohort 3), and colitis (2 in cohorts 2 and 3).  The colitis patients responded to high-dose steroids and supportive care. The patient with the grade 3 rash was re-challenged with the study drug after recovery; there was no recurrence of serious rash. Other immune-related events = grade 2 hypophysitis (2) leading to adrenal insufficiency in both patients, grade 2 thyroiditis (7) leading to primary hypothyroidism, and grade 1 pneumonitis (1) without clinical sequelae.  Adrenal insufficiency and hypothyroidism were successfully managed with hormone replacement."

Here's a link to the study report overall:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

Don't know if this helps.  Hope everything resolves as easily as possible!!!  Hang in there.  Celeste

Hey Mat,

I developed hypophysitis while on ipi. The ipi was discontinued after 3 infusions because of it and that's when I started with pembro. I had other side effects too, and I think they were from the ipi, but its impossible to know because of the gradual onset of some of them.

So I ended up with adrenal insufficiency because of the hypophysitis, as well as a testosterone insufficiency. I am currently on cortisone and bi-weekly shots of testosterone.

I also went from a type 2 to type 1 diabetic; my immune system attacked my pancreas and I'm now on insulin.

I was experiencing light hypothyroidism before treatment, but during the last few months this has become acute and a test for specific antibodies has shown my immune system has also attacked my thyroid. I am taking levo-thyroxine for this.

A recent brain MRI has shown that the swelling of the pituitary is gone (my pituitary increased from 4mm to 9mm when the hypophysitis was detected). At the height of the symptoms, I had a constant headache that felt like it was just below my skull, in the center of top of my head. NSAIDs alone were not enough to relieve it and I needed those and oxycodone. I don't recall that there was any involvement with my eye. I do know that my oncologist was concerned that the headaches might have been the result of brain mets. I am very grateful that was not the case.

Hopefully they are also going to test your cortisol, thyroid stimulating hormone (TSH), thyroxine (T4), testosterone, glucose, and A1C.

Good luck!

Hey Mat,

I developed hypophysitis while on ipi. The ipi was discontinued after 3 infusions because of it and that's when I started with pembro. I had other side effects too, and I think they were from the ipi, but its impossible to know because of the gradual onset of some of them.

So I ended up with adrenal insufficiency because of the hypophysitis, as well as a testosterone insufficiency. I am currently on cortisone and bi-weekly shots of testosterone.

I also went from a type 2 to type 1 diabetic; my immune system attacked my pancreas and I'm now on insulin.

I was experiencing light hypothyroidism before treatment, but during the last few months this has become acute and a test for specific antibodies has shown my immune system has also attacked my thyroid. I am taking levo-thyroxine for this.

A recent brain MRI has shown that the swelling of the pituitary is gone (my pituitary increased from 4mm to 9mm when the hypophysitis was detected). At the height of the symptoms, I had a constant headache that felt like it was just below my skull, in the center of top of my head. NSAIDs alone were not enough to relieve it and I needed those and oxycodone. I don't recall that there was any involvement with my eye. I do know that my oncologist was concerned that the headaches might have been the result of brain mets. I am very grateful that was not the case.

Hopefully they are also going to test your cortisol, thyroid stimulating hormone (TSH), thyroxine (T4), testosterone, glucose, and A1C.

Good luck!

Hey Mat,

I developed hypophysitis while on ipi. The ipi was discontinued after 3 infusions because of it and that's when I started with pembro. I had other side effects too, and I think they were from the ipi, but its impossible to know because of the gradual onset of some of them.

So I ended up with adrenal insufficiency because of the hypophysitis, as well as a testosterone insufficiency. I am currently on cortisone and bi-weekly shots of testosterone.

I also went from a type 2 to type 1 diabetic; my immune system attacked my pancreas and I'm now on insulin.

I was experiencing light hypothyroidism before treatment, but during the last few months this has become acute and a test for specific antibodies has shown my immune system has also attacked my thyroid. I am taking levo-thyroxine for this.

A recent brain MRI has shown that the swelling of the pituitary is gone (my pituitary increased from 4mm to 9mm when the hypophysitis was detected). At the height of the symptoms, I had a constant headache that felt like it was just below my skull, in the center of top of my head. NSAIDs alone were not enough to relieve it and I needed those and oxycodone. I don't recall that there was any involvement with my eye. I do know that my oncologist was concerned that the headaches might have been the result of brain mets. I am very grateful that was not the case.

Hopefully they are also going to test your cortisol, thyroid stimulating hormone (TSH), thyroxine (T4), testosterone, glucose, and A1C.

Good luck!