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Double Vision

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Double Vision

Posted By
jennifer83
3/9/2020 8:32am
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Replies: 12

Hello all,

Just an update. Quick history - stage 4 with lung/liver mets. Four rounds of ipi/nivo and all tumors are shrinking! Started double dose of opdivo 2/21. Very soon after, my vision started to blur. Last week, my vision started to double and got progressively worse. Tuesday, I drove to work but there was no possible way to drive home. Went to ER at MD Anderson Wednesday where I saw an ophthalmologist who ordered another MRI to ensure no cancer growth in the optic nerve area - there wasn't any, whew! But the muscles around my eyes had increased in size 50% since my initial MRI before treatment.
They put me on a high dose steroid for the next seven days (50mg Predisone). Other than that, they recommended I buy fake glasses and scotch tape one side out to help with the double vision - it's helping (yet I keep thinking about funny it is that this woman went to BRAIN DOCTOR SCHOOL and fake glasses with scotch tape is what she prescribes) :) :) :)

Trucking along with some weird side effects! I feel like the steroids have been kicking in and my vision is slightly better. Wishing you all the best in your fights!

Jennifer

Primary 1B in 2014 - WLE and SNB negative. Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

stevek1959x - (3/9/2020 - 9:06am)

Hey Jennifer, most likely not related but I'll throw it out anyway. Four months after I completed one year of Nivo, I woke up one morning and my eyes were blurry and I could not focus. My derm had just prescribed a new med along with a low dose of prednisone to help me with a rash I've had. Thinking it was something to do with the new med, I called y derm immediately. He said the med would not cause this and I should make an appointment with my GP. My GP checked my glucose and it was in the 500 range. Diagnosis - Type 2 Diabetes as a result of immunotherapy (this was confirmed by my onc as well). So yet another adverse affect of immunotherapy. FYI - I was healthy, good diet, not overweight and had no history of diabetes in my family.

jennifer83 - (3/9/2020 - 4:12pm)

Very interesting! My sugar levels were stable at the ER last Wednesday, but my liver enzymes continue to climb, so they're watching that closely. Thank you for sharing your response!!

Jennifer

Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

JudiAU - (3/9/2020 - 9:13am)

I’m sorry Jennifer. I lost most of my vision after brain surgery and it was terrifying. I got it back slowly over the next six months.

In the plus side, the Olympics were very excited with everything doubled. You may have an entertaining summer!

jennifer83 - (3/9/2020 - 4:15pm)

That is so scary.. I'm so glad that you have had vision gains since then. I did have a good cry on Tuesday when I realized there was absolutely no way for me to drive. It was the first time that I felt like I couldn't overcome something with the disease. And it's just so scary! What if I can't work? (I'm the only income and insurance provider for the family of five)... What if I can't drive? How will I take care of my kids? It was an emotional week.

Laughter IS the best medicine, though... and I appreciate your suggestion for some interesting Olympic watching this summer! :)

Jennifer

Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

JudiAU - (3/9/2020 - 8:51pm)

On my original brain tumor the optical nerve started to entangle with the tumor on my facial nerve. The “untangling” produced vision loss for about six months. I couldn’t drive etc. the second surgery didn’t effect my visions but I had a stroke. When I finally got home from rehab my vision was back to normal and I very slowly started driving myself and than others. I saw a neuro-opthomalogist to confirm. My vision is almost perfect and though it still feels like I don’t see well, it is a result of the nerve damage to myself.

We hired a morning driver to get the kids to their three difference schools. That was truly worth the money. My husband was able to pick up or rely on friends in the afternoon. We let her go when I could drive again and then hired her again with the melanoma diagnosis. Considering buying a stick for the blind until you get your bearings. It was VERY helpful, not as a navigation tool per se, but people were much more aware of me/kinder/gave me more space and courtesy when I really needed it. I may also have used to whack people a few times when they were being rude SOB and saw me and didn’t move out of the way. It was supremely satisfying.

JudiAU - (3/9/2020 - 8:54pm)

I wanted to add the Nuero-opthamologist said I had developed glaucoma from the mega steroids I had taken that it would be official at the next appointment. Well I didn’t get back for a year and it had resolved itself.

Lucas - (3/9/2020 - 10:12am)

My vision became very blurry during treatment. It turned out to be type 1 diabetes,

jennifer83 - (3/9/2020 - 4:15pm)

Thank you for sharing your experience!!

Jennifer

Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

Linny - (3/9/2020 - 10:15am)

So sorry to hear about the double vision. The good thing is that it can resolve on its own. Vision therapy can help and there are eye doctors who specialize in that sort of thing. Since you're already going to MD Anderson, I'd start by asking around over there. There are prescription glasses that can correct it, as well. Double vision can have any number of causes and it sounds like the most serious one has already been ruled out.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

Rocco - (3/9/2020 - 12:52pm)

I experienced severe swelling of the muscles behind my eyes after my 5th dose of ipi (10 mg/ kg) many years ago while on a trial. Blurry and double vision. High doses of Prednisone and steroid injections to the muscles (outside corners of my eyes) were used to get it under control, but it took awhile. You may want to have your thyroid tested. I had never had thyroid issues before but the tests results at that time showed I had hyperthyroidism likely triggered by the immunotherapy which can cause thyroid eye disease (and possibly Graves disease swelling of the muscles, etc)). All very treatable once you know root cause. All is treatments and tests are documented here under my profile.

Luke 1:37

jennifer83 - (3/9/2020 - 4:10pm)

Yes! The swelling prior to the double vision was awful. For at least a month, I've woken up with terrible swelling in my upper and lower lids...eyes are puffy and red. I'm so self conscious about it at work because no one knows about my treatment here :( I do ice compression day and night and they don't help at all.

Neuro-ophthalmologist did diagnose me with Thyroid Eye Disease and they are going to continue to monitor for Graves. I did develop hypothyroidism after my third ipi/nivo treatment and am on meds for that. Doc said that these two things aren't related... weird?!

Hoping I keep seeing results with the steroids... vision is slightly better and swelling is lessening! Thanks for sharing your experiences!

Jennifer

Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

Rocco - (3/10/2020 - 11:35am)

I had symptoms like Graves but without the Graves antibodies present. Steroids eventually did the trick but it took awhile to taper off as I was put on a much higher dose than you. Had no thyroid issues for about 3 years after that, when out of the blue I went hypo (text book symptoms) and was retested and found positive for Graves. Have taken Methimazole - very low dose - daily for about 2 years or so and all is well to the point where I see the Endo. Dr only once a year and the Graves specialist only if I were to have a recurrence of symptoms / swelling/double vision, etc. Hang in there!

Luke 1:37