Problem with eyes on Ipi
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Problem with eyes on Ipi

› Forums › Cutaneous Melanoma Community › Problem with eyes on Ipi

  • Post
    • December 27, 2011 at 7:46 pm
    lyndaloo
    Participant

    My husband has his third round of Ipi on Friday. He has been experiencing trouble focusing specficially with the left eye with some eye pain, He hasn't been driving the past month as he doesn't feel his vision is good enough to drive. The last ipi treatment he told the doctor his vision was weird and the doc gave him steriod drops which seems to help somewhat.  He had a brain ct scan abou 9 weeks ago when he first started ipi which showed no new growth of mets so I am praying this is not related.  Has anyone else experienced vision problems while on ipi?

    My husband has his third round of Ipi on Friday. He has been experiencing trouble focusing specficially with the left eye with some eye pain, He hasn't been driving the past month as he doesn't feel his vision is good enough to drive. The last ipi treatment he told the doctor his vision was weird and the doc gave him steriod drops which seems to help somewhat.  He had a brain ct scan abou 9 weeks ago when he first started ipi which showed no new growth of mets so I am praying this is not related.  Has anyone else experienced vision problems while on ipi? The doctor thought the drug could be inflaming the eye region as it is known to do this with other organs as well. No other side effects except the occasional headache and tiredness. The drug seems to be working as several subcutaneous tumors have all shrunk to almost nothing!!

Viewing 8 reply threads
  • Replies
      • December 28, 2011 at 1:53 am
      j.m.l.
      Participant

      I have the same thing.. eyes are very blurry. going to second eye dr. tomorrow. Need to lower the eye pressure. Also using steroids to control headaches, weakness. Unfort. the ipi did not shrink my tumor. So I have all the side effects and not the good effect. The ipi is def. responsible for inflaming these areas. Good luck to you

        • December 29, 2011 at 4:16 pm
        lyndaloo
        Participant

        Thank you for your reply. I truly wish you well.

        • December 29, 2011 at 4:16 pm
        lyndaloo
        Participant

        Thank you for your reply. I truly wish you well.

        • December 29, 2011 at 4:16 pm
        lyndaloo
        Participant

        Thank you for your reply. I truly wish you well.

        • December 29, 2011 at 11:41 pm
        lhaley
        Participant

        J.M.I.

        I saw your post the other day about your eye Dr.

        Please let me know what you've been given for drops for the eyes. I'm having problems as they have weaned me off of the steroids. My eye dr has suggested to go onto steroids! There is no way since they've been working hard on this for a month to get of of the same medicine! I've been told that the area is inflamed around the retina, this is caused from the steroids.

        The eye Dr told me that there were no drops to offer so was wondering what you were offered.

        Linda

        • December 30, 2011 at 12:06 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 30, 2011 at 1:33 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 1:33 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 1:33 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 1:55 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 1:55 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 1:55 am
        lhaley
        Participant

        Thank you for the info.  Right now I'm on Dex (brain met). I go on Tuesday with me mel specialist and will copy this and talk to him,  I'm hoping as soon as I'm off of the dex then the other issues go away.   Scans are Tuesday so that means for the last 3 months my immune system has been destroyed.  

        Linda

        • December 30, 2011 at 12:06 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 30, 2011 at 12:06 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 30, 2011 at 12:07 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 30, 2011 at 12:07 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 30, 2011 at 12:07 am
        j.m.l.
        Participant

        Linda.. you know all this medication is the pits. Theres always something. But I went to two eye doctors and they both came up with the same thing. So  that sounds like the way to go. I have been on steroids for a couple of months. It seems to be needed to control other side effects (headaches, weakness, shaking, ears ringing) When I reduced the roids, the side effects worsened and this means more inflammation which is not good. So when I increase the roids a little, (30mg per day) side effects seems in control

        My vision is blurry,but both doctors said the same thing. The increase in eye pressure was back to normal with the drops. I now wear my previous glasses and this really helped my vision. Doctor said that steroids are nec. to control everything even though its not great to need this med.

        Everyone says diff. things and you know, no one knows everything. The name of the drops is latanoprost(now using its generic equiv)  I didnt think it was working until I saw the second dr. He said the pressure was perfect. So I guess it does work for me. I dont have to see him for 3 months. These drops are spec. for eye pressure. Go to WebMD.

        Its  scary to hear what some drs. say.

        good luck.   BTW the ipi didnt work for me. I have the side effects but the latest tumor is growing.

        jml

        • December 29, 2011 at 11:41 pm
        lhaley
        Participant

        J.M.I.

        I saw your post the other day about your eye Dr.

        Please let me know what you've been given for drops for the eyes. I'm having problems as they have weaned me off of the steroids. My eye dr has suggested to go onto steroids! There is no way since they've been working hard on this for a month to get of of the same medicine! I've been told that the area is inflamed around the retina, this is caused from the steroids.

        The eye Dr told me that there were no drops to offer so was wondering what you were offered.

        Linda

        • December 29, 2011 at 11:41 pm
        lhaley
        Participant

        J.M.I.

        I saw your post the other day about your eye Dr.

        Please let me know what you've been given for drops for the eyes. I'm having problems as they have weaned me off of the steroids. My eye dr has suggested to go onto steroids! There is no way since they've been working hard on this for a month to get of of the same medicine! I've been told that the area is inflamed around the retina, this is caused from the steroids.

        The eye Dr told me that there were no drops to offer so was wondering what you were offered.

        Linda

      • December 28, 2011 at 1:53 am
      j.m.l.
      Participant

      I have the same thing.. eyes are very blurry. going to second eye dr. tomorrow. Need to lower the eye pressure. Also using steroids to control headaches, weakness. Unfort. the ipi did not shrink my tumor. So I have all the side effects and not the good effect. The ipi is def. responsible for inflaming these areas. Good luck to you

      • December 28, 2011 at 1:53 am
      j.m.l.
      Participant

      I have the same thing.. eyes are very blurry. going to second eye dr. tomorrow. Need to lower the eye pressure. Also using steroids to control headaches, weakness. Unfort. the ipi did not shrink my tumor. So I have all the side effects and not the good effect. The ipi is def. responsible for inflaming these areas. Good luck to you

      • December 28, 2011 at 2:48 am
      Angela C
      Participant

      Hello.

      I also had vision problems from Ipi. It started after I had completed all four doses. My eye pressures were off of the chart in both eyes. My vision was blurry far away and when I would try to read things, I had a hard time focusing. Sounds like it might be something similar that your husband is experiencing. Have they sent him to an opthamologist to have his eye pressures checked? My doctors are reporting my experience to the FDA because they believe it was from the Ipi.

      I've seen a couple of other people on this board in the last few weeks that had vision issues as a result of Ipi as well.

      ~Angela

        • December 29, 2011 at 4:19 pm
        lyndaloo
        Participant

        Hi Angela – Thank you for your reply.  We see the doctor on Friday and will mention the eye issues again.  My husbands eye problems sound very similar to yours. Did you do the maintenance ipi after your initial four doses?  What was recommended for your eyes, and have your eyes regained proper sight.  Again, thank you for your time.

        • December 29, 2011 at 4:19 pm
        lyndaloo
        Participant

        Hi Angela – Thank you for your reply.  We see the doctor on Friday and will mention the eye issues again.  My husbands eye problems sound very similar to yours. Did you do the maintenance ipi after your initial four doses?  What was recommended for your eyes, and have your eyes regained proper sight.  Again, thank you for your time.

        • December 29, 2011 at 4:19 pm
        lyndaloo
        Participant

        Hi Angela – Thank you for your reply.  We see the doctor on Friday and will mention the eye issues again.  My husbands eye problems sound very similar to yours. Did you do the maintenance ipi after your initial four doses?  What was recommended for your eyes, and have your eyes regained proper sight.  Again, thank you for your time.

      • December 28, 2011 at 2:48 am
      Angela C
      Participant

      Hello.

      I also had vision problems from Ipi. It started after I had completed all four doses. My eye pressures were off of the chart in both eyes. My vision was blurry far away and when I would try to read things, I had a hard time focusing. Sounds like it might be something similar that your husband is experiencing. Have they sent him to an opthamologist to have his eye pressures checked? My doctors are reporting my experience to the FDA because they believe it was from the Ipi.

      I've seen a couple of other people on this board in the last few weeks that had vision issues as a result of Ipi as well.

      ~Angela

      • December 28, 2011 at 2:48 am
      Angela C
      Participant

      Hello.

      I also had vision problems from Ipi. It started after I had completed all four doses. My eye pressures were off of the chart in both eyes. My vision was blurry far away and when I would try to read things, I had a hard time focusing. Sounds like it might be something similar that your husband is experiencing. Have they sent him to an opthamologist to have his eye pressures checked? My doctors are reporting my experience to the FDA because they believe it was from the Ipi.

      I've seen a couple of other people on this board in the last few weeks that had vision issues as a result of Ipi as well.

      ~Angela

      • December 28, 2011 at 2:24 pm
      Rocco
      Participant

      Yes, I had very severe eye issues after having finished 4 doses in the trial and then one maintenance dose which really kicked off the eye issues – way back in Jan 2009.  Please see my PatNet for details.  I'm treated at Dana Farber in Boston and I sought out an Ophthalmology team in Cambridge, MA.  I was their first patient to come in with these issues related to ipi.   The muscles on the back of my eyes were swelling/inflamed.  My brain MRI showed the swollen muscles.  This caused a very specific pain headache focused over the area of my eyebrows.  The Ophthalmologist recommended steroid treatments.  Systemic at first and then much later switched to steroid injections just below the eye – sounds much worse than they were (over in like 5 seconds).   My vision is fine now and has been for well over 18 months.  Brain MRIs show no swelling of the eye muscles and if you didn't know my history you'd never know there was an issue.  Ipi continued to work steroids and all ) as I am cancer free now and have been since early 2009.  Hang in there, get the right people talking together regarding treatment. Here's the contact info for my Ophthalmologist – if your Dr. has ANY questions – contact him to consult.

      Dr. David Hinkle

      (617) 621-6377

      Mass Eye Research Surgical Institute

      http://www.mersi.us/aboutus/Hinklebackground.htm

        

      Pat (aka Rocco) – Stage IV

      • December 28, 2011 at 2:24 pm
      Rocco
      Participant

      Yes, I had very severe eye issues after having finished 4 doses in the trial and then one maintenance dose which really kicked off the eye issues – way back in Jan 2009.  Please see my PatNet for details.  I'm treated at Dana Farber in Boston and I sought out an Ophthalmology team in Cambridge, MA.  I was their first patient to come in with these issues related to ipi.   The muscles on the back of my eyes were swelling/inflamed.  My brain MRI showed the swollen muscles.  This caused a very specific pain headache focused over the area of my eyebrows.  The Ophthalmologist recommended steroid treatments.  Systemic at first and then much later switched to steroid injections just below the eye – sounds much worse than they were (over in like 5 seconds).   My vision is fine now and has been for well over 18 months.  Brain MRIs show no swelling of the eye muscles and if you didn't know my history you'd never know there was an issue.  Ipi continued to work steroids and all ) as I am cancer free now and have been since early 2009.  Hang in there, get the right people talking together regarding treatment. Here's the contact info for my Ophthalmologist – if your Dr. has ANY questions – contact him to consult.

      Dr. David Hinkle

      (617) 621-6377

      Mass Eye Research Surgical Institute

      http://www.mersi.us/aboutus/Hinklebackground.htm

        

      Pat (aka Rocco) – Stage IV

        • December 29, 2011 at 4:24 pm
        lyndaloo
        Participant

        Thank you for your reply Rocco, Wow, cancer free since 2009, that is incredible!!  I am hoping for the same results for my husband.  Its good to hear your eyesight has regained itself.  We will definitely be talking to the doc on Friday and ask for an opthalmoloigst consult.  Was your maintenance dose for 4 sessions? 

        • December 29, 2011 at 4:24 pm
        lyndaloo
        Participant

        Thank you for your reply Rocco, Wow, cancer free since 2009, that is incredible!!  I am hoping for the same results for my husband.  Its good to hear your eyesight has regained itself.  We will definitely be talking to the doc on Friday and ask for an opthalmoloigst consult.  Was your maintenance dose for 4 sessions? 

        • December 29, 2011 at 4:24 pm
        lyndaloo
        Participant

        Thank you for your reply Rocco, Wow, cancer free since 2009, that is incredible!!  I am hoping for the same results for my husband.  Its good to hear your eyesight has regained itself.  We will definitely be talking to the doc on Friday and ask for an opthalmoloigst consult.  Was your maintenance dose for 4 sessions? 

        • December 30, 2011 at 12:45 am
        Rocco
        Participant

        Steroid treatments reduced the swelling of the eye muscles, which eventually dropped the high eye pressure readings back to normal.  After the 4 treatments on the trial, I was OK'ed for maintenance.  I had only the one maintenance dose and then had the major eye issues and put on systemic steroids.  They never put me back on ipi – didn't matter as it was working and did the trick on just the 4 trial treatments and the one maintenance dose.

        Let us know how it goes with the doctor and definitely get an opthalmologist consult.

        • December 30, 2011 at 12:45 am
        Rocco
        Participant

        Steroid treatments reduced the swelling of the eye muscles, which eventually dropped the high eye pressure readings back to normal.  After the 4 treatments on the trial, I was OK'ed for maintenance.  I had only the one maintenance dose and then had the major eye issues and put on systemic steroids.  They never put me back on ipi – didn't matter as it was working and did the trick on just the 4 trial treatments and the one maintenance dose.

        Let us know how it goes with the doctor and definitely get an opthalmologist consult.

        • December 30, 2011 at 12:45 am
        Rocco
        Participant

        Steroid treatments reduced the swelling of the eye muscles, which eventually dropped the high eye pressure readings back to normal.  After the 4 treatments on the trial, I was OK'ed for maintenance.  I had only the one maintenance dose and then had the major eye issues and put on systemic steroids.  They never put me back on ipi – didn't matter as it was working and did the trick on just the 4 trial treatments and the one maintenance dose.

        Let us know how it goes with the doctor and definitely get an opthalmologist consult.

      • December 28, 2011 at 2:24 pm
      Rocco
      Participant

      Yes, I had very severe eye issues after having finished 4 doses in the trial and then one maintenance dose which really kicked off the eye issues – way back in Jan 2009.  Please see my PatNet for details.  I'm treated at Dana Farber in Boston and I sought out an Ophthalmology team in Cambridge, MA.  I was their first patient to come in with these issues related to ipi.   The muscles on the back of my eyes were swelling/inflamed.  My brain MRI showed the swollen muscles.  This caused a very specific pain headache focused over the area of my eyebrows.  The Ophthalmologist recommended steroid treatments.  Systemic at first and then much later switched to steroid injections just below the eye – sounds much worse than they were (over in like 5 seconds).   My vision is fine now and has been for well over 18 months.  Brain MRIs show no swelling of the eye muscles and if you didn't know my history you'd never know there was an issue.  Ipi continued to work steroids and all ) as I am cancer free now and have been since early 2009.  Hang in there, get the right people talking together regarding treatment. Here's the contact info for my Ophthalmologist – if your Dr. has ANY questions – contact him to consult.

      Dr. David Hinkle

      (617) 621-6377

      Mass Eye Research Surgical Institute

      http://www.mersi.us/aboutus/Hinklebackground.htm

        

      Pat (aka Rocco) – Stage IV

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