Vision problems as side effect?

[TammyCross]

I was on Xeloda for about nine months, then stopped. Toward the end of that treatment and during the three weeks I was off all treatments, my distance vision declined dramatically. I started Orserdu last week. I was out yesterday, walking through the subway passages in Times Square, when I suddenly couldn't see the signs, especially one that had bright lights around it.

I have seen that blurry vision is a possible side effect of both Xeloda and Orserdu, although not a common one.

Has anyone else had this? It is terrifying. I am 77 and due for cataracts, but this drop in acuity was sudden and drastic. I have other weird symptoms, possibly side effects, like the sound of blood rushing in my ear.

[HelenWi]

hi Tammy, I googled your symptoms and found this:

If you're experiencing a sound like blood rushing in your ear accompanied by vision problems, this could be a symptom of pulsatile tinnitus, which is often caused by issues with blood flow near your ears …

I’d get it checked out with your oncologist.

I can imagine that the vision issue was scary for you, so best to get it resolved so you don’t worry. . Let us know how you’re doing.

Best ,

Helen

[TammyCross in reply to HelenWi]

Oh. I did find pulsatile tinnitus and all the possible causes, but I didn't see the link to vision problems. Thanks for catching that. I have had so many PET/CT scans and CAT scans, including a recent one of my head and neck, I can't believe there is something going on that didn't show up. I have an appointment with an ophthalmologist tomorrow. I think he is just going to say cataracts, but why so sudden? He was a fellow at MSK so I hope he can take into account the effects of chemo.

Interesting there is that link. Before I had cancer (and quite possibly related to it), I had jaw pain and vision problems that were misdiagnosed by three doctors in three different specialties. I googled it and found one disease linked them, giant cell arteritis, an autoimmune disease. I was immediately tested for it, had a biopsy, and went on a high dose of prednisone for two years. Complete suppression of my immune system. As soon as I stopped the prednisone, a huge tumor was found in my chest. I think the lack of an immune system allowed it to flourish. But that reminds me -- I should tell the ophthalmologist about my autoimmune disease. It affected my vision.

Wow, just looked up pulsatile tinnitus and vision problems. Stroke or vascular issue. Thanks for that. I guess I had better tell my primary doc. I was going to wait until a previously scheduled appointment at the end of the month.

[Discocat in reply to TammyCross]

There's a small possibility that you might be having a reaction to your recent head scan....I'm almost 4 years in from diagnosis and never felt anything after until my last CT with trace last week ...I felt nauseous, dizzy with headache and light sensitivity the night after and even the next day...my scan was neck to lower torso excluding head.

[LadyPastor]

By any chance do you use breathing steroids? They can make cataracts come on very sudden. But that loss of vision stays as it is until removed.

[nonna70]

Wow! I'm glad you're going to your ophthalmologist tomorrow! I believe I'd write everything down beforehand-then you can check with your PCP if you need to.

[fancydog]

Sudden loss of vision or blurring of vision should be treated with immediate evaluation as this could be signs of a stroke. If you cannot see a Dr soon I would go to the emergency room

[TammyCross]

Well, the doc said that cancer meds can cause damage to retina. He ran lots of tests. Not a stroke, no nerve damage, no problem with blood flow. He said I have cataracts the same size in both eyes, and not bad enough for surgery. The vision in my right eye is worse than left and declined quickly, but he said it is "a medical mystery" and "I don't like mysteries." He went away for a bit and came back and said, "I've got it. Cataracts get worse when they get wider and cover more of your eye, and when protein accumulates." He decided my right eye had more protein accumulating. At least nothing serious. Except when I looked it up, that is what a cataract is, so it is no explanation at all.

I stopped worrying since I don't even need new glasses. The blurriness seems to come and go, as does the tinnitus. (I have been off steroids for 5 years, and the head scan was over a month ago, so not those either.)

[HelenWi in reply to TammyCross]

Well, whew, thank goodness all the tests were negative and all the serious stuff is ruled out. Wishing you an uneventful period after this stressful one. Take care.

[TammyCross in reply to HelenWi]

Yes, false alarm on that particular anxiety.

Started Orserdu/elacestrant. I have high hopes and am tolerating it well -- but it is my 7th line of treatment! In 6 years. That is not good! But I feel quite well and look healthy, so it is perhaps misleading.