Pressure Behind Eyes – Post SRS

Hi, Eric-

My brother had SRS and did not feel any pressure behind his eyes–he didn't feel much of anything. Then he took ipi and 5 days later developed severe neurological symptoms. His doctor theorized that the ipi-activated T-cells got into the brain, surrounded the brain mets and caused brain swelllng.

If your wife is having any neurological symptoms, including pressure behind the eye, she should get it looked at immediately. If it is a met, the met could bleed and cause a stroke– not good. It could also be that ipi-activated T-cells are surrounding and killing an existing brain met. The swelling and extra intra-cranial pressure caused by the swelling can damage the brain. 

Please do not let her suffer in silence. This is probably something that can be treated. She needs to call her doctor and report this immediately.

Hi, Eric-

My brother had SRS and did not feel any pressure behind his eyes–he didn't feel much of anything. Then he took ipi and 5 days later developed severe neurological symptoms. His doctor theorized that the ipi-activated T-cells got into the brain, surrounded the brain mets and caused brain swelllng.

If your wife is having any neurological symptoms, including pressure behind the eye, she should get it looked at immediately. If it is a met, the met could bleed and cause a stroke– not good. It could also be that ipi-activated T-cells are surrounding and killing an existing brain met. The swelling and extra intra-cranial pressure caused by the swelling can damage the brain. 

Please do not let her suffer in silence. This is probably something that can be treated. She needs to call her doctor and report this immediately.

Hi, Eric-

My brother had SRS and did not feel any pressure behind his eyes–he didn't feel much of anything. Then he took ipi and 5 days later developed severe neurological symptoms. His doctor theorized that the ipi-activated T-cells got into the brain, surrounded the brain mets and caused brain swelllng.

If your wife is having any neurological symptoms, including pressure behind the eye, she should get it looked at immediately. If it is a met, the met could bleed and cause a stroke– not good. It could also be that ipi-activated T-cells are surrounding and killing an existing brain met. The swelling and extra intra-cranial pressure caused by the swelling can damage the brain. 

Please do not let her suffer in silence. This is probably something that can be treated. She needs to call her doctor and report this immediately.

Hey Eric,

Sorry for a new worry…but don't be asking us on this board and MIF!!!  Ask your doctor.  Like Kyle said on the other board….she may be dealing with side effects from the ipi that can cause anything from basic eye pain to problems with the optic nerve and so on.  All of us can name a multitude of things…but none of that helps.  Go to your doctor.  Something as simple as a neurologic exam and fundoscopic exam (to check for papilledema) of your wife's eyes may give a great deal of answers…that none of us can give you here!!!  They may or may not recommend an additional scan….but they can certainly advise you and your wife as to where they think you should start!!!!  There is no doubt that the person with melanoma gets the final say.  But, right now….neither of you nor any of us know what you're dealing with.  Get an exam!!!  Then, decide what your wife thinks she should do.  And….I do know it is easy for me to give grand advice…sitting far away in my own little world.  But, we've talked before….I just worry about you both!  Yours, c

Hey Eric,

Sorry for a new worry…but don't be asking us on this board and MIF!!!  Ask your doctor.  Like Kyle said on the other board….she may be dealing with side effects from the ipi that can cause anything from basic eye pain to problems with the optic nerve and so on.  All of us can name a multitude of things…but none of that helps.  Go to your doctor.  Something as simple as a neurologic exam and fundoscopic exam (to check for papilledema) of your wife's eyes may give a great deal of answers…that none of us can give you here!!!  They may or may not recommend an additional scan….but they can certainly advise you and your wife as to where they think you should start!!!!  There is no doubt that the person with melanoma gets the final say.  But, right now….neither of you nor any of us know what you're dealing with.  Get an exam!!!  Then, decide what your wife thinks she should do.  And….I do know it is easy for me to give grand advice…sitting far away in my own little world.  But, we've talked before….I just worry about you both!  Yours, c

Hey Eric,

Sorry for a new worry…but don't be asking us on this board and MIF!!!  Ask your doctor.  Like Kyle said on the other board….she may be dealing with side effects from the ipi that can cause anything from basic eye pain to problems with the optic nerve and so on.  All of us can name a multitude of things…but none of that helps.  Go to your doctor.  Something as simple as a neurologic exam and fundoscopic exam (to check for papilledema) of your wife's eyes may give a great deal of answers…that none of us can give you here!!!  They may or may not recommend an additional scan….but they can certainly advise you and your wife as to where they think you should start!!!!  There is no doubt that the person with melanoma gets the final say.  But, right now….neither of you nor any of us know what you're dealing with.  Get an exam!!!  Then, decide what your wife thinks she should do.  And….I do know it is easy for me to give grand advice…sitting far away in my own little world.  But, we've talked before….I just worry about you both!  Yours, c

Hi Eric –

Sorry that your wife (and you) are dealing with this.  I've not had SRS or brain mets, but I did have a very specific reaction after 5 doses of Ipi that resulted in swelling of the muscles at the back of my eyes.  I was OK for 4 doses but on the 5th (1st maintenance dose) I started experiencing eye issues.  I started having symptoms similar to 'Graves' disease.  My thyroid levels were out of whack which may have been triggered by Ipi, but I didn't have the thryoid markers for true Graves disease.  It was a puzzle to my Onc, my Opthamologist and Endocrynologist.  We were on the cutting edge (ipi) with no others in the Ipi trial experiencing this.  Eventually I was treated with high dose steroids for this.  I never went back on Ipi, but I didn't need to – it continued working even while on steriods and I'm NED.

If it is Ipi related and not mel/tumor/SRS, etc, then: Aside from the pressure, is she experiencing any double vision?  Redness of the eyes?  Gritty feeling (like sand) in her eyes?  Difficulty or limited field of vision – she should be able to keep her head straight ahead and then using only her eyes be able to follow your finger around looking to the far left, far right, way up and way down, etc without issue or double vision.  I also started getting headaches very specifically over my eye brows. 

I might suggest a couple of things to follow up on this:   1) Make an appointment ASAP with a good Opthamologist and have them check her eye pressures, perhaps a few other tests, etc to get a baseline.   2) For the brain MRI in March, have your Onc add on  to the MRI order additional 'specific slices (pictures) of the orbits (eyes)'.  That will offer a better look at the eye muscles and should you need to further follow up with an Opthamologist, would give him/her a better look at that area.  3) Have them include thyroid tests in her next bloodwork

All of my issues were in early 2009. I've been NED since then thanks to Ipi.   Fast forward to early 2013 and I started experiencing thryoid issues and have since been diagnosed with actual Graves disease – and this time my thryoid tests show the markers for it.  I'm still fine, on a daily thryoid med, and have no real eye issues with 20/20 vision. 

Since Ipi takes the brakes off the immune system, my med team and I have a theory that I might have had thyroid/Graves lurking in my background and that ipi unleashed it a bit in 2009.  I have no family history of Graves or thryoid issues.

I wish you and your wife well on this journey.

Hi Eric –

Sorry that your wife (and you) are dealing with this.  I've not had SRS or brain mets, but I did have a very specific reaction after 5 doses of Ipi that resulted in swelling of the muscles at the back of my eyes.  I was OK for 4 doses but on the 5th (1st maintenance dose) I started experiencing eye issues.  I started having symptoms similar to 'Graves' disease.  My thyroid levels were out of whack which may have been triggered by Ipi, but I didn't have the thryoid markers for true Graves disease.  It was a puzzle to my Onc, my Opthamologist and Endocrynologist.  We were on the cutting edge (ipi) with no others in the Ipi trial experiencing this.  Eventually I was treated with high dose steroids for this.  I never went back on Ipi, but I didn't need to – it continued working even while on steriods and I'm NED.

If it is Ipi related and not mel/tumor/SRS, etc, then: Aside from the pressure, is she experiencing any double vision?  Redness of the eyes?  Gritty feeling (like sand) in her eyes?  Difficulty or limited field of vision – she should be able to keep her head straight ahead and then using only her eyes be able to follow your finger around looking to the far left, far right, way up and way down, etc without issue or double vision.  I also started getting headaches very specifically over my eye brows. 

I might suggest a couple of things to follow up on this:   1) Make an appointment ASAP with a good Opthamologist and have them check her eye pressures, perhaps a few other tests, etc to get a baseline.   2) For the brain MRI in March, have your Onc add on  to the MRI order additional 'specific slices (pictures) of the orbits (eyes)'.  That will offer a better look at the eye muscles and should you need to further follow up with an Opthamologist, would give him/her a better look at that area.  3) Have them include thyroid tests in her next bloodwork

All of my issues were in early 2009. I've been NED since then thanks to Ipi.   Fast forward to early 2013 and I started experiencing thryoid issues and have since been diagnosed with actual Graves disease – and this time my thryoid tests show the markers for it.  I'm still fine, on a daily thryoid med, and have no real eye issues with 20/20 vision. 

Since Ipi takes the brakes off the immune system, my med team and I have a theory that I might have had thyroid/Graves lurking in my background and that ipi unleashed it a bit in 2009.  I have no family history of Graves or thryoid issues.

I wish you and your wife well on this journey.

Hi Eric –

Sorry that your wife (and you) are dealing with this.  I've not had SRS or brain mets, but I did have a very specific reaction after 5 doses of Ipi that resulted in swelling of the muscles at the back of my eyes.  I was OK for 4 doses but on the 5th (1st maintenance dose) I started experiencing eye issues.  I started having symptoms similar to 'Graves' disease.  My thyroid levels were out of whack which may have been triggered by Ipi, but I didn't have the thryoid markers for true Graves disease.  It was a puzzle to my Onc, my Opthamologist and Endocrynologist.  We were on the cutting edge (ipi) with no others in the Ipi trial experiencing this.  Eventually I was treated with high dose steroids for this.  I never went back on Ipi, but I didn't need to – it continued working even while on steriods and I'm NED.

If it is Ipi related and not mel/tumor/SRS, etc, then: Aside from the pressure, is she experiencing any double vision?  Redness of the eyes?  Gritty feeling (like sand) in her eyes?  Difficulty or limited field of vision – she should be able to keep her head straight ahead and then using only her eyes be able to follow your finger around looking to the far left, far right, way up and way down, etc without issue or double vision.  I also started getting headaches very specifically over my eye brows. 

I might suggest a couple of things to follow up on this:   1) Make an appointment ASAP with a good Opthamologist and have them check her eye pressures, perhaps a few other tests, etc to get a baseline.   2) For the brain MRI in March, have your Onc add on  to the MRI order additional 'specific slices (pictures) of the orbits (eyes)'.  That will offer a better look at the eye muscles and should you need to further follow up with an Opthamologist, would give him/her a better look at that area.  3) Have them include thyroid tests in her next bloodwork

All of my issues were in early 2009. I've been NED since then thanks to Ipi.   Fast forward to early 2013 and I started experiencing thryoid issues and have since been diagnosed with actual Graves disease – and this time my thryoid tests show the markers for it.  I'm still fine, on a daily thryoid med, and have no real eye issues with 20/20 vision. 

Since Ipi takes the brakes off the immune system, my med team and I have a theory that I might have had thyroid/Graves lurking in my background and that ipi unleashed it a bit in 2009.  I have no family history of Graves or thryoid issues.

I wish you and your wife well on this journey.