Keytruda & vision changes

Thyriod levels normal? Would ask about other tests for thyroid issues

Thyriod levels normal? Would ask about other tests for thyroid issues

Thyriod levels normal? Would ask about other tests for thyroid issues

Hi Allie,

Headaches can be a sign of inflammation at your pituitary , and inflammation can also cause visual disturbances.

Do your eyes feel sore- and are the vision changes at the same time as the headaches?

How would you describe the headache pain and how long does it last ? 

Agree that thyroid and cortisol tests might be a good idea and another eye check if this is still bothering you as this could pick up signs of problems in the area of the retina and optic nerve. If nothing else a clean check up would be reassuring.

The pill can sometimes cause visual changes- could this be a possibility ?

I think you are right to report this again to your team but if you can give them detail it might help them work out what is best to do next.

ps the pituitary problems seem to be described as a headache like no other  that is persistent and accompanied by severe fatigue and eye problems or uveitis can be treated locally with steroid eye drops…

Hope all goes well on Monday….

Best of luck

Deb

Hi Allie,

Headaches can be a sign of inflammation at your pituitary , and inflammation can also cause visual disturbances.

Do your eyes feel sore- and are the vision changes at the same time as the headaches?

How would you describe the headache pain and how long does it last ? 

Agree that thyroid and cortisol tests might be a good idea and another eye check if this is still bothering you as this could pick up signs of problems in the area of the retina and optic nerve. If nothing else a clean check up would be reassuring.

The pill can sometimes cause visual changes- could this be a possibility ?

I think you are right to report this again to your team but if you can give them detail it might help them work out what is best to do next.

ps the pituitary problems seem to be described as a headache like no other  that is persistent and accompanied by severe fatigue and eye problems or uveitis can be treated locally with steroid eye drops…

Hope all goes well on Monday….

Best of luck

Deb

Hi Allie,

Headaches can be a sign of inflammation at your pituitary , and inflammation can also cause visual disturbances.

Do your eyes feel sore- and are the vision changes at the same time as the headaches?

How would you describe the headache pain and how long does it last ? 

Agree that thyroid and cortisol tests might be a good idea and another eye check if this is still bothering you as this could pick up signs of problems in the area of the retina and optic nerve. If nothing else a clean check up would be reassuring.

The pill can sometimes cause visual changes- could this be a possibility ?

I think you are right to report this again to your team but if you can give them detail it might help them work out what is best to do next.

ps the pituitary problems seem to be described as a headache like no other  that is persistent and accompanied by severe fatigue and eye problems or uveitis can be treated locally with steroid eye drops…

Hope all goes well on Monday….

Best of luck

Deb

Hi Allie, I have had lines as well over the last year and a half. If I am watching T.V. sometimes it will happen. If I go and lie down for a small nap when I close my eye lids, it is like I can still see a lighting bolt line. When I wake up it is gone. I talked about it with my Oncologist and they set up an eye exam at the eye institute located in the same hospital. They did a couple of tests including a field of vision type test with little lights flashing at different sides and I had to select with a button which side I was seeing things. I passed with flying colours and the discusion with the eye specialist went well, with them saying if the symptoms occur again come back. I get Mri scans every 3 months and they remain clear during the time of these eye issues. I wish I could give you, more of an exact reason for the cause. May be there are others that have been given better feedback as to the possible causes. Best Wishes!!!!Ed

Hi Allie, I have had lines as well over the last year and a half. If I am watching T.V. sometimes it will happen. If I go and lie down for a small nap when I close my eye lids, it is like I can still see a lighting bolt line. When I wake up it is gone. I talked about it with my Oncologist and they set up an eye exam at the eye institute located in the same hospital. They did a couple of tests including a field of vision type test with little lights flashing at different sides and I had to select with a button which side I was seeing things. I passed with flying colours and the discusion with the eye specialist went well, with them saying if the symptoms occur again come back. I get Mri scans every 3 months and they remain clear during the time of these eye issues. I wish I could give you, more of an exact reason for the cause. May be there are others that have been given better feedback as to the possible causes. Best Wishes!!!!Ed

Hi Allie, I have had lines as well over the last year and a half. If I am watching T.V. sometimes it will happen. If I go and lie down for a small nap when I close my eye lids, it is like I can still see a lighting bolt line. When I wake up it is gone. I talked about it with my Oncologist and they set up an eye exam at the eye institute located in the same hospital. They did a couple of tests including a field of vision type test with little lights flashing at different sides and I had to select with a button which side I was seeing things. I passed with flying colours and the discusion with the eye specialist went well, with them saying if the symptoms occur again come back. I get Mri scans every 3 months and they remain clear during the time of these eye issues. I wish I could give you, more of an exact reason for the cause. May be there are others that have been given better feedback as to the possible causes. Best Wishes!!!!Ed

Allie – I have NOT been doing Keytruda but did take a full year of Interferon (the very early version of the immune boosting drugs).  It had many, many side effects many of which were energy sapping (like getting the flu 150 times in one year).

One of the weird side effects was flashing in one of my eyes.  They sent me to a retina specialist who assured me nothing was wrong with my eyes.  So if wasn't the receptor (eye), maybe it was my processor (brain) so they sent me for an MRI.  All clear there.

Once I stopped the Interferon treatment the eye flashes went away.  There were some documented cases similar to mine but not many.

While Keytruda and Interferon are completely different drugs….I can tell you for sure that there was a connection between taking Interferon and the eye flashes.  While there is no doubt that some of these new drugs are life savers….there will likely be many future consequences that are still unknown.  

The good news is that hopefully many more folks will be alive to figure them out.  

I suspect the vision connection is real and hopefully it will "fix" itself once you are off Keytruda as well.

Best wishes

Michel

Allie – I have NOT been doing Keytruda but did take a full year of Interferon (the very early version of the immune boosting drugs).  It had many, many side effects many of which were energy sapping (like getting the flu 150 times in one year).

One of the weird side effects was flashing in one of my eyes.  They sent me to a retina specialist who assured me nothing was wrong with my eyes.  So if wasn't the receptor (eye), maybe it was my processor (brain) so they sent me for an MRI.  All clear there.

Once I stopped the Interferon treatment the eye flashes went away.  There were some documented cases similar to mine but not many.

While Keytruda and Interferon are completely different drugs….I can tell you for sure that there was a connection between taking Interferon and the eye flashes.  While there is no doubt that some of these new drugs are life savers….there will likely be many future consequences that are still unknown.  

The good news is that hopefully many more folks will be alive to figure them out.  

I suspect the vision connection is real and hopefully it will "fix" itself once you are off Keytruda as well.

Best wishes

Michel

Allie – I have NOT been doing Keytruda but did take a full year of Interferon (the very early version of the immune boosting drugs).  It had many, many side effects many of which were energy sapping (like getting the flu 150 times in one year).

One of the weird side effects was flashing in one of my eyes.  They sent me to a retina specialist who assured me nothing was wrong with my eyes.  So if wasn't the receptor (eye), maybe it was my processor (brain) so they sent me for an MRI.  All clear there.

Once I stopped the Interferon treatment the eye flashes went away.  There were some documented cases similar to mine but not many.

While Keytruda and Interferon are completely different drugs….I can tell you for sure that there was a connection between taking Interferon and the eye flashes.  While there is no doubt that some of these new drugs are life savers….there will likely be many future consequences that are still unknown.  

The good news is that hopefully many more folks will be alive to figure them out.  

I suspect the vision connection is real and hopefully it will "fix" itself once you are off Keytruda as well.

Best wishes

Michel

I progressed on Keytruda with a tumor in my optic nerve that arose between MRIs every 8 weeks.  Push for another MRI.

I progressed on Keytruda with a tumor in my optic nerve that arose between MRIs every 8 weeks.  Push for another MRI.

I progressed on Keytruda with a tumor in my optic nerve that arose between MRIs every 8 weeks.  Push for another MRI.