› Forums › General Melanoma Community › IPI/Nivo Hypophysitis
- This topic has 30 replies, 8 voices, and was last updated 7 years, 1 month ago by snow white.
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- February 8, 2017 at 9:38 pm
Hello,
I have been a stage 4 patient since 2012. In December 2016 I started on the IPI/Nivo combination and made it through 3 rounds. I am due for my 4th round next week. However, this week I developed a headache that persisted for 5 long days. Yesterday I had bloodwork done and an MRI. They confirmed that the pituitary gland is swollen. The oncologist and endocrinologist agreed that it is worth a shot to save the pituitary with high doses of prednisone that will be tapered down every 5 days. In the meantime I will not be receiving treatment.
The likelihood of getting the 4th infusion if Ipi is small as they believe it will only damage the pituitary further. The good news is that I should still be able to continue on the Nivolumab. I haven't had a CT scan yet to determine the response to treatment. Hopefully the tumour in my pancreas has responded.
I was wondering if anyone else has a similar response to this treatment and were you able to continue on with Nivolumab?
Thanks
Mark
- Replies
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- February 8, 2017 at 10:45 pm
https://www.youtube.com/watch?v=VCOAk7i9kmU hope it is helpfull. Ed
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- February 8, 2017 at 10:45 pm
https://www.youtube.com/watch?v=VCOAk7i9kmU hope it is helpfull. Ed
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- February 8, 2017 at 10:45 pm
https://www.youtube.com/watch?v=VCOAk7i9kmU hope it is helpfull. Ed
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- February 9, 2017 at 2:29 am
Mark,
Similar story. I enrolled in a sequential trial of ipi/nivo in Aug 13. Did 6 Nivo infusions with no issues. Then was scheduled for 4 ipi infusions but only made it through 3 before hypophysitis kicked in. Think I started on 60 mg of prednisone daily and weened down over 3 weeks. Started back on nivo for another 18 months with no issues. Unfortunately I am on 5 mg daily of prednisone and testosterone now due to the damage to the pituitary gland but small price to pay.
Brian
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- February 9, 2017 at 2:45 am
Thanks Brian. I appreciate you sharing your story. How did your cancer respond to the treatment?
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- February 9, 2017 at 2:45 am
Thanks Brian. I appreciate you sharing your story. How did your cancer respond to the treatment?
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- February 9, 2017 at 2:45 am
Thanks Brian. I appreciate you sharing your story. How did your cancer respond to the treatment?
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- February 9, 2017 at 2:29 am
Mark,
Similar story. I enrolled in a sequential trial of ipi/nivo in Aug 13. Did 6 Nivo infusions with no issues. Then was scheduled for 4 ipi infusions but only made it through 3 before hypophysitis kicked in. Think I started on 60 mg of prednisone daily and weened down over 3 weeks. Started back on nivo for another 18 months with no issues. Unfortunately I am on 5 mg daily of prednisone and testosterone now due to the damage to the pituitary gland but small price to pay.
Brian
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- February 9, 2017 at 2:29 am
Mark,
Similar story. I enrolled in a sequential trial of ipi/nivo in Aug 13. Did 6 Nivo infusions with no issues. Then was scheduled for 4 ipi infusions but only made it through 3 before hypophysitis kicked in. Think I started on 60 mg of prednisone daily and weened down over 3 weeks. Started back on nivo for another 18 months with no issues. Unfortunately I am on 5 mg daily of prednisone and testosterone now due to the damage to the pituitary gland but small price to pay.
Brian
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- February 9, 2017 at 5:42 am
Hi Mark,
I have the same story. After my third infusion of it we had to discontinue it because I developed hypophysitis as well. In my case it turned out to be a permanent.
Even know was given a high dose of prednisone to try and save my pituitary, at this point it doesn't talk to any other glands except my thyroid. The damage is considered to be permanent. There is still a small amount of communication with my thyroid.
I have a good endocrinologist and I am doing well on hormone replacement therapy.
– Paul
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- February 9, 2017 at 5:42 am
Hi Mark,
I have the same story. After my third infusion of it we had to discontinue it because I developed hypophysitis as well. In my case it turned out to be a permanent.
Even know was given a high dose of prednisone to try and save my pituitary, at this point it doesn't talk to any other glands except my thyroid. The damage is considered to be permanent. There is still a small amount of communication with my thyroid.
I have a good endocrinologist and I am doing well on hormone replacement therapy.
– Paul
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- February 9, 2017 at 2:20 pm
Hey Paul. Sorry to hear that your pituitary was damaged. The oncologist/endocrinologist want to try high dose prednisone and taper it off over time. They hope to get the pituitary to function but they said the odds of this happening are low.
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- February 9, 2017 at 2:20 pm
Hey Paul. Sorry to hear that your pituitary was damaged. The oncologist/endocrinologist want to try high dose prednisone and taper it off over time. They hope to get the pituitary to function but they said the odds of this happening are low.
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- February 9, 2017 at 2:20 pm
Hey Paul. Sorry to hear that your pituitary was damaged. The oncologist/endocrinologist want to try high dose prednisone and taper it off over time. They hope to get the pituitary to function but they said the odds of this happening are low.
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- February 9, 2017 at 5:42 am
Hi Mark,
I have the same story. After my third infusion of it we had to discontinue it because I developed hypophysitis as well. In my case it turned out to be a permanent.
Even know was given a high dose of prednisone to try and save my pituitary, at this point it doesn't talk to any other glands except my thyroid. The damage is considered to be permanent. There is still a small amount of communication with my thyroid.
I have a good endocrinologist and I am doing well on hormone replacement therapy.
– Paul
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- February 9, 2017 at 2:47 pm
I too suffered from an enlarged pituitary after my 3rd dose of ipi/nivo combo. I suffered from a mild headache for about a week that turned severe. I was taken of treatment for a while and put on prednisone. Over time I was weaned off and have resumed nivo treatments. I am on hormone replacement therapy and suspect I will be for the rest of my life which is fine with me if it means I get to do it the rest of my life. During my first scans I saw a reduction of 50% of all tumors across the board. My second scan I remained stable (this was also during the height of my prednisone treatment which I know they say shouldnt effect treatment outcome). I am due for 3rd scan in a couple of weeks and I have a good vibe that my results will show positive movement again.
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- February 9, 2017 at 2:47 pm
I too suffered from an enlarged pituitary after my 3rd dose of ipi/nivo combo. I suffered from a mild headache for about a week that turned severe. I was taken of treatment for a while and put on prednisone. Over time I was weaned off and have resumed nivo treatments. I am on hormone replacement therapy and suspect I will be for the rest of my life which is fine with me if it means I get to do it the rest of my life. During my first scans I saw a reduction of 50% of all tumors across the board. My second scan I remained stable (this was also during the height of my prednisone treatment which I know they say shouldnt effect treatment outcome). I am due for 3rd scan in a couple of weeks and I have a good vibe that my results will show positive movement again.
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- February 9, 2017 at 2:47 pm
I too suffered from an enlarged pituitary after my 3rd dose of ipi/nivo combo. I suffered from a mild headache for about a week that turned severe. I was taken of treatment for a while and put on prednisone. Over time I was weaned off and have resumed nivo treatments. I am on hormone replacement therapy and suspect I will be for the rest of my life which is fine with me if it means I get to do it the rest of my life. During my first scans I saw a reduction of 50% of all tumors across the board. My second scan I remained stable (this was also during the height of my prednisone treatment which I know they say shouldnt effect treatment outcome). I am due for 3rd scan in a couple of weeks and I have a good vibe that my results will show positive movement again.
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- February 9, 2017 at 3:17 pm
Hey Mark,
Sorry you are dealing with this. Ipi is certainly the bad boy in this situation and the first reports of hypophysitis were in patients taking ipi alone. Here is a link with all the hypophysitis reports I have:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=hypophysitis
On the "good" side, from a 2014 longitudinal ipi study there is this: "Male gender and older age are risk factors. Pituitary enlargement is sensitive and specific….can precede clinical diagnosis, and resolves rapidly. Anterior pituitary function recovery is uncommon. Incidence of hypophysitis may positively predict survival in melanoma patients treated with ipi."
Some of the studies are a bit buried in posts about side effects generally, but perhaps they will help. I wish you well. Celeste
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- February 9, 2017 at 3:17 pm
Hey Mark,
Sorry you are dealing with this. Ipi is certainly the bad boy in this situation and the first reports of hypophysitis were in patients taking ipi alone. Here is a link with all the hypophysitis reports I have:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=hypophysitis
On the "good" side, from a 2014 longitudinal ipi study there is this: "Male gender and older age are risk factors. Pituitary enlargement is sensitive and specific….can precede clinical diagnosis, and resolves rapidly. Anterior pituitary function recovery is uncommon. Incidence of hypophysitis may positively predict survival in melanoma patients treated with ipi."
Some of the studies are a bit buried in posts about side effects generally, but perhaps they will help. I wish you well. Celeste
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- February 9, 2017 at 3:17 pm
Hey Mark,
Sorry you are dealing with this. Ipi is certainly the bad boy in this situation and the first reports of hypophysitis were in patients taking ipi alone. Here is a link with all the hypophysitis reports I have:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=hypophysitis
On the "good" side, from a 2014 longitudinal ipi study there is this: "Male gender and older age are risk factors. Pituitary enlargement is sensitive and specific….can precede clinical diagnosis, and resolves rapidly. Anterior pituitary function recovery is uncommon. Incidence of hypophysitis may positively predict survival in melanoma patients treated with ipi."
Some of the studies are a bit buried in posts about side effects generally, but perhaps they will help. I wish you well. Celeste
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- February 9, 2017 at 8:45 pm
Hi, I had a very similar set of circumstances. I am Stage 4 (DX in Oct of 2016). After my 3rd infusion of combo ipi/nivo, I developed severe headaches that lasted for 3 weeks when my specialist (the wonderful Dr. Freeman at The Angeles Clinic) suggested that we check my pituitary. Still not sure why my onc didn't suggest it earlier. Pituitary was "kaput" and I started a 6 day prednisone treatment along with hydrocortisone and levothyroxine. The headaches went away, I was able to do the 4th infusion and so far, all is good. The scans this time were stable (I, too, had seen dramatic improvement after the 3rd scan) and showed no spread. Meeting with an endocrinologist to see what I need to do for long term treatment. I believe that the ongoing hormone treatment may be forever but am willing to deal with it if that is the worse of the side effects. Keep me posted as to how you are doing.
Linda
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- February 9, 2017 at 8:45 pm
Hi, I had a very similar set of circumstances. I am Stage 4 (DX in Oct of 2016). After my 3rd infusion of combo ipi/nivo, I developed severe headaches that lasted for 3 weeks when my specialist (the wonderful Dr. Freeman at The Angeles Clinic) suggested that we check my pituitary. Still not sure why my onc didn't suggest it earlier. Pituitary was "kaput" and I started a 6 day prednisone treatment along with hydrocortisone and levothyroxine. The headaches went away, I was able to do the 4th infusion and so far, all is good. The scans this time were stable (I, too, had seen dramatic improvement after the 3rd scan) and showed no spread. Meeting with an endocrinologist to see what I need to do for long term treatment. I believe that the ongoing hormone treatment may be forever but am willing to deal with it if that is the worse of the side effects. Keep me posted as to how you are doing.
Linda
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- February 10, 2017 at 2:33 am
Hi Linda, I am so glad to know of someone else being treated by Dr. Freeman. We really love her! My Dad is receiving treatment at The Angeles Clinic and very happy to be there!
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- February 10, 2017 at 2:33 am
Hi Linda, I am so glad to know of someone else being treated by Dr. Freeman. We really love her! My Dad is receiving treatment at The Angeles Clinic and very happy to be there!
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- February 10, 2017 at 2:33 am
Hi Linda, I am so glad to know of someone else being treated by Dr. Freeman. We really love her! My Dad is receiving treatment at The Angeles Clinic and very happy to be there!
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- February 9, 2017 at 8:45 pm
Hi, I had a very similar set of circumstances. I am Stage 4 (DX in Oct of 2016). After my 3rd infusion of combo ipi/nivo, I developed severe headaches that lasted for 3 weeks when my specialist (the wonderful Dr. Freeman at The Angeles Clinic) suggested that we check my pituitary. Still not sure why my onc didn't suggest it earlier. Pituitary was "kaput" and I started a 6 day prednisone treatment along with hydrocortisone and levothyroxine. The headaches went away, I was able to do the 4th infusion and so far, all is good. The scans this time were stable (I, too, had seen dramatic improvement after the 3rd scan) and showed no spread. Meeting with an endocrinologist to see what I need to do for long term treatment. I believe that the ongoing hormone treatment may be forever but am willing to deal with it if that is the worse of the side effects. Keep me posted as to how you are doing.
Linda
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