Eye Mets

[Antares12]

I just got back from the Retina center. I have a metastatic lesion on my right eye. It's off to the side, so it doesn't affect my vision, but I was warned that could change. Has anyone else had this, and did your normal MBC routine help reduce the lesion?

[Tennisgirl1225]

I had a lesion and fluid in my left eye. It was to the left as well and didn’t really impede my vision much. I believe I was into my 3 rd round of Ibrance 125 mg and Letrozole 2.5 mg when I went for a f/u with the eye doctor. My vision was 20/70 before Ibrance and with the meds my vision was 20/20 The lesion and fluid were gone. I was excited!! I still am!! Woohoo!! The meds are working not only in my eye but the other spots as well. I am so grateful! I am now in my 6th round of this combo of drugs as well as a monthly infusion of Zometa 2.5 mg. I go back for scans in a couple of weeks. 🙏🏻

[Antares12 in reply to Tennisgirl1225]

I'm on ibrance/Faslodex and Xgeva. I hope I have the same results as you.

[RLN-overcomer in reply to Tennisgirl1225]

Great Sister/warrior. Your prayers have been answered. 😇🙏 I know you are preparing for a huge celebration. Praise will be in my mouth.😀

[PJBinMI]

Do you have lobular bc? It sometimes metastasizes to places that ductal bc does't usually go. I had it turn up in a ureter. It often goes to tissue that lines other organs and structures. I've heard of it showing up in the pericardium (lining around the heart), intestines, lining of the chest and/or abdomen. It can be difficult to find, too, as it forms strands rather than clumps. Since our vision is so important, you might want to see if you can find either an ophthalmologist who specializes in seeing patients with cancer, or an oncologist who specializes in seeing patients with mets to the eye and surrounding tissues. I have no idea how hard it would be to find doctors like that and I only recently learned that there are doctors who specialize in cardiology and oncology.

[Antares12 in reply to PJBinMI]

Mine is invasive ductal. The mets were primarily in my bones and just a tiny touch in the lungs, until this eye thing poppped up. We only have one Retina center here, and they do specialize in cancers in the eyes. I go back in six months and if the ibrance/Faslodex combo hasn't done the job, then they'll see about what other options are available.

[Reallyno in reply to PJBinMI]

Thank you for sharing the info about Lobular bc. I have both robust & ductal but never really see anything about lobular. I guess I will make that eye appointment & pay more attention to all the floaters I have

[Antares12 in reply to Reallyno]

Mine was found with a retina scan that my regular optometrist does. There was a significant light spot that wasn't there last year, so she referred me to the Retina Center.

[PJBinMI]

It must be a relief to be able to see a retina specialist! And one who knows about cancer, too! A long long time ago, I had to see a cornea specialist and was surprised at how extremely specialized eye doctors could be! I could be off base about this, but since they are waiting six months for more evaluations, they probably don't think the cancer is real aggressive, which is good. I hope the Faslodex will do it's job for you!

[FeeBeeB]

Hi,I have a met in my right eye. I noticed after coming home from a consultation during which I was told things were stable and my liver mets were shrinking. What a result on Exemestane and Everolimus (Aromasin and Affinator) after Capecitabine (Xeloda) did nothing! The eye met was treated successfully with radiation: it remains stable nearly four months down the line. However, my radiation oncologist asked for an urgent MRI at the time of diagnosis. Even though I am ER+ HER 2- and only around 10% of women with this type of MBC go on to develop brain mets, you guessed it, they found a met to the lining of the brain and a couple of small ones in the cerebellum. We decided to wait and see how the Everolimus and Exemestane would work since we didn’t know how long the mets had been there but sadly I had to stop taking the treatment as it caused pneumonitis (lungs). The CT scan which identified the lung condition also showed progression to lung mets. The next line of treatment beckoned. I am currently waiting on sourcing Piqray (I’m in the uk and it is difficult!) as my cancer has a heavy PIC3CA mutation (incl. a CDK 4/6 PIC3CA fused mutation). I have read one testimony in which an eye met was kept in check by Piqray. I am hoping that when/if I source this drug it will keep everything in check! If your current treatment plan is working it too should work on your eye met. Just make sure you are vigilant to any changes in your vision. If it helps, my consultant ophthalmologist was very positive about the outcomes for eye mets. He also said progression is relatively easy to notice: a kind of early warning system.

Hope this helps!

Wishing you all the best,

Fi.

[Antares12]

With a met in the eye, I've been worried about the brain as well. Even though my type doesn't necessarily go to the brain. I just hope the meds I'm on now will take care of things.

I hope your next treatment works for you.

[GoodBunny]

Dear A, I am recovering from mets to left eye after 10 days radiation. My onc docs are at UCSD and they said mets to the eye is extremely rare but they have treated it. Now after 3 mos no sign of cancer there but still side effects from rads. Eyelid thickened and tearing most of the time, several months of double vision. Slow but steady improvement now. It could take up to a year for eye to recover. However, so grateful I still have my vision. Every case is different but in mine the doc said not to wait treating lest it reach my central vision, in which case they couldn’t do anything. I’ve been on Ibrance/Faslodex for 6 months after some progression after 6 mos with Xeloda. It has been a rough ride but with family support and joy in my work life I have strength to go on. Sending you hope, prayers and love from SoCal 💜

[Antares12 in reply to GoodBunny]

I'm glad to hear you are doing better. I just had an MRI of the brain area plus the eye, and there was no sign of the cancer. I hope it has been taken care of with the Ibrance/Faslodex.