› Forums › General Melanoma Community › IL-2 and a rare side effect – optic neuropathy
- This topic has 10 replies, 5 voices, and was last updated 12 years, 7 months ago by
ValinMtl.
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- September 25, 2011 at 11:53 pm
Well, as I had mentioned before, Dave finished his second week of IL-2 last Friday, September 16. Other than the usual side effects (fatigue, itchy, peeling skin) he felt well. However, on Sunday afternoon he started complaining of blurry vision. On Monday and Tuesday it was the same, and Wednesday morning it was bad enough to call his oncologist (Dr.
Well, as I had mentioned before, Dave finished his second week of IL-2 last Friday, September 16. Other than the usual side effects (fatigue, itchy, peeling skin) he felt well. However, on Sunday afternoon he started complaining of blurry vision. On Monday and Tuesday it was the same, and Wednesday morning it was bad enough to call his oncologist (Dr. Khushulani). He told him to see his optholmologist immediately (Dave is blind in his left eye due to a childhood injury). His optic nerve was slightly swollen, so he recommended a brain MRI to rule out brain mets. MRI was good, so his onc and optho agreed it was a rare side effect and would improve. However, by Friday morning Dave's vision decreased so much he could no longer see. We rushed him back into his optholmologist, who confirmed that by then Dave's optic nerve and optic disc were severely swollen. They immediately started him on 80mg prednisone to decrease the swelling, knowing that the steroids would contradict the IL-2. However, to Dave this was a quality vs quantity of life issue – and he wanted his vision back. Since his optho was not 100% sure of Dave's vision returning, I cannot tell you how happy we were that he woke up this morning and could see shadows and muted colors again – a significant improvement.
Apparently, Dave had a "toxic" reaction to the IL-2. We do not know what triggered this or whether it had to do with the fact that he had his other eye removed 10 years ago (he had kept his bad eye, and eventually developed glaucoma in it). The prednisone seems to be working, and we are hoping that his vision continues to improve to normal over the next week.
I thought I would throw this out to the board in the event anybody else ever encounters this. We (meaning I, the onc, the optho) could not find a case study or any reference where this had happened before. But maybe, if this ever happens to anybody else, our situation would pop up in their search.
Most certainly Dave will be looking into other treatment options, but in the meantime, I still believe that IL-2 (or studies involving IL-2) is your best chance for first line complete response. I just keep praying that eventually, they will find a better one.
Best wishes to you all,
Maria
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- September 26, 2011 at 1:05 am
Hi Maria, I am sorry to hear about Dave's vision difficulties, I hope the steroids continue to work their magic. My husband did not have optic neuropathy however he did have neuropathy in both of his arms and hands which caused him to stop IL2 after the second course. The swelling caused carpal tunnel syndrome in his left arm, and his right arm fixed itself. (Thank goodness because that is the one that has lymphadema from surgery several years ago.) The docs here in Charlotte said that they had seen this once before with IL2. Happy thoughts for your next treatment journey.
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- September 26, 2011 at 1:05 am
Hi Maria, I am sorry to hear about Dave's vision difficulties, I hope the steroids continue to work their magic. My husband did not have optic neuropathy however he did have neuropathy in both of his arms and hands which caused him to stop IL2 after the second course. The swelling caused carpal tunnel syndrome in his left arm, and his right arm fixed itself. (Thank goodness because that is the one that has lymphadema from surgery several years ago.) The docs here in Charlotte said that they had seen this once before with IL2. Happy thoughts for your next treatment journey.
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- September 26, 2011 at 4:26 am
Gld to here about the improvement in the vision. I kow what it's like worry about the eyes. Do let us know about the future with the il-2 treatments.
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- September 26, 2011 at 4:26 am
Gld to here about the improvement in the vision. I kow what it's like worry about the eyes. Do let us know about the future with the il-2 treatments.
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- September 26, 2011 at 11:48 am
http://melanomamissionary.blogspot.com/">Maria,
One of the rare side effects to IL-2 therapy is Optic Neuropathy. This is an autoimmune response to the therapy. This means that the two doses of IL-2 has activated Dave's immune system. I myself ended with three doses before I had to stop the IL-2 tharapy. Today…NED going on 4yrs. I wish Dave the same.
So here is the deal. Dave may want to (Watch and wait) and get a Scan. If there are no new tumors and no progression, I would continue to watch and wait. The immune response takes about 86-112 days to show any shrinkage. Have a backup plan just in case.
Please keep us informed and give my best to Dave.
best regards,
Jimmy B
http://melanomamissionary.blogspot.com/
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- September 26, 2011 at 12:27 pm
Thank you all so much for replying. Dave's eye sight has improved again, although not back to normal yet. Dr. Khushalani also mentioned that those producing an autoimmune reaction had better response rates. My fear though is that the prednisone may be cancelling out any effect IL-2 had on the tumors. He goes back to the optho this morning, so I'll update this thread when we get the results. I am going to ask the doc if it would be appropiate to discontinue the steroids once his vision has returned to normal, or if he would have to remain on it for the 14 day course.
We were looking for a complete response with IL-2, but I will say that if his scans show stability, he'll take that and not do another round of IL-2.
We'll keep you all posted,
Best wishes,
Maria
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- September 26, 2011 at 12:27 pm
Thank you all so much for replying. Dave's eye sight has improved again, although not back to normal yet. Dr. Khushalani also mentioned that those producing an autoimmune reaction had better response rates. My fear though is that the prednisone may be cancelling out any effect IL-2 had on the tumors. He goes back to the optho this morning, so I'll update this thread when we get the results. I am going to ask the doc if it would be appropiate to discontinue the steroids once his vision has returned to normal, or if he would have to remain on it for the 14 day course.
We were looking for a complete response with IL-2, but I will say that if his scans show stability, he'll take that and not do another round of IL-2.
We'll keep you all posted,
Best wishes,
Maria
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- September 26, 2011 at 11:48 am
http://melanomamissionary.blogspot.com/">Maria,
One of the rare side effects to IL-2 therapy is Optic Neuropathy. This is an autoimmune response to the therapy. This means that the two doses of IL-2 has activated Dave's immune system. I myself ended with three doses before I had to stop the IL-2 tharapy. Today…NED going on 4yrs. I wish Dave the same.
So here is the deal. Dave may want to (Watch and wait) and get a Scan. If there are no new tumors and no progression, I would continue to watch and wait. The immune response takes about 86-112 days to show any shrinkage. Have a backup plan just in case.
Please keep us informed and give my best to Dave.
best regards,
Jimmy B
http://melanomamissionary.blogspot.com/
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