Eye issues. Is this a thing?

Bengal

Has anyone else who has gone through a prolonged chemo therapy/radiation regimen subsequently experienced problems with their eyes. I got severe inflammation of the eyes during chemo (extreme light sensitivity, pain and redness. Another thing nobody bothered to mention was a high probability). My last treatment was summer 2018 but I continue to have issues the most recent happening now. Ophthalmologist diagnosed Chronic Dry Eye and then the medication he prescribed for that gave me conjunctivitis. I know, yay. I find it very difficult to be excited about recovery when these things that "might" be linked to treatment keep coming back to haunt me. I have also had stomach ulcers, Chronic Fatigue and several teeth have just spontaneously broken.

Kalee

Yes, I also experience extreme dry eye....because of chemo....very few things I've tried have worked...My opthalmologist prescribed 2 things for it, the last being xidra, they didn't help. I found 2 OTC products that helped, one was an eye drop with omega 3 in it, it is Refresh Optiva with omega 3, it lasted a little longer than the others, but I found one that I've been using for the last year that lasts longer than any of the rest, and it's the BION tears. Before I found the BION tears, I would wake up because my eyes were so dry and painful. You can get either of them on Amazon. I hope this helps you:)

PaulineJ

I've been having eye problems for years now .Can't remember when it stated years after chemo and readiation.

MarcieB

I experienced dry eye after my third chemo infusion It was confusing to me because it made my eyes water (which doesn't seem like it would be DRY eye?) It would come and go during my entire treatment. I don't usually have trouble, but, every once in a while, I will feel like there is something in my eye, and it will get all red and runny, but there is nothing there.

I hate that news about your teeth breaking! And I am definitely more fatigued than I used to be. I can be watching TV, and be very interested, and suddenly...I'm gone! I just fall asleep without realizing it until I awake to find the program is over. I hate that.

Carool

I had no chemo trouble with my eyes, but I’ve had bone loss in my mouth and have lost a few teeth and I blame chemo (I have false ones to replace those).

Bengal

I saw my ophthalmologist again today. He diagnosed ACUTE chronic dry eye in my right eye (my left eye has just "regular" chronic dry eye).. What I am having trouble understanding is why is this happening NOW? I completed chemo in 2018. I guess theses things can come back to haunt us years later. When I asked him for a explanation he gave me this one: I qualify for the perfect quad-fecta. I am apparently "elderly", female past menopause, have arthritis and, the biggie, had chemo therapy in my past. I need to do more research but all these factors are contributory. All I know is, as an avid reader, this is proving very hard to accept. I have 3 new medications which will hopefully provide some relief. Adding to the problem, finding lubricating eye drops acceptable to my super sensitive eyes. Kalee, I will try your suggestion. Thanks all.

Carool

Bengal, I hope you get relief from at least one of the medications.

PaulineJ

Benal I had cancer in 2012 and 2 surgeries.But didn;t have problems 'til years after.Can't remember the year though for I had open heart surgery in 2014 and din't have problems from that year neither.All I remember is having ptsd more so now than ever and can't remember somethings ,but remember many other things,weird
But you're right it does come back to haunt you.

Ashera

Bengal - put me on this list. Dx'd as chronic dry eye. Then, really...chronic dry eye. Hit or miss with drops. I've not tried the Bion mentioned above - but one I use the most is the Bausch/Lomb SootheXR. Eye doc said I'd not been using it enough! Like there is not too many times to use it. Always before I sleep, and sometimes when I wake - I can tell my eyes need it again. Dr seemed to thing the OTC's were at least as good as the prescriptions out there. I 'cry' at will and nose runs constantly. One thing helpful "Dr said" would be to use hot, moist compresses on eyes daily. Also...there are glands along top and bottom lids that secret the oils that lubricate the eye...and to massage those gently every day. Also, to seek those drops out that were the sterile little plastic things - that once opened, they were good for several uses, being careful not to rub dirt on the tip!!
I too, am a huge reader - like a book a day most of the time - and this scares me that I might lose that ability. Sucks getting older. As does all these free gifts with purchase we are always surprised by. Warmly Pam

MarcieB

This is such good information, thank you for asking the question, Bengal. Today I was out in the wind and my right eye began to water...and I thought, "Oh, no!" I too, am an avid reader and I would honestly hate for anything to interfere with that. So I am keeping notes on these meds.

BTW, a while back we were trying to interest people in a virtual book exchange once a month. The idea was to give a little review or recommendation for what we, ourselves were currently reading. The site was having it's problems back then, maybe we should try again? I love to know what everyone is reading.

Bengal

Thanks Ashera. I have tried numerous OTC drops and ointments trying to find something that my eyes will accept without stinging and burning. I have found the best thing that helps my eyes feel better is REAL tears. As this drags on and on I'm finding it's not hard to produce real tears! Down side; all this crying leaves my eyes red and puffy. After five visits to Ophthalmologist I think we're finally getting somewhere. He gave me samples of Xiidra to try over the weekend. It stings like crazy when I first put the drops in but if I wait 10 minutes and then put in BIO true that relieves the burning sensation. I find I can even read a little bit again and allow myself limited screen time. Feeling less depressed.

banditwalker

I finished chemo 8 yrs ago so I don't think it is what has caused my dry eyes. But, whatever it was I am getting help with Xiidra, after trying everything else. My eye doc did the paperwork for me and I can now receive the script for $0 as opposed to the almost $1200 per month. Dry eye can be caused by a myriad of things but mine is because the glands around my lids tend to dry up the tears I do make. I am able to finally read and watch tv without problems but once I get outside in the bright sunlight or breeze it makes it very hard to drive. It's a real pain. 2 drops twice a day of Xiidra, which you can't see anything for about 20 minutes. OTC drops with Omega 3 at least twice a day. Warm compresses for 15 minutes each evening and Refresh PM lubricant each night while sleeping. Seems I'm constantly doing something with my eyes. It's the not being able to drive thing that bothers me the most. Thank goodness for delivery services now.

banditwalker

Carool, I never thought about chemo being a cause but I have had several teeth in the last 4 years that needed removing. Maybe that is what caused my thyroid to go bad, my dry eyes, etc... but sometimes I feel as tho' it's just easier to blame chemo rather than admit I'm getting old

Bengal

I thought I had finally come up with a winning combination. When I saw ophthalmologist on Friday he gave me enough samples of Xiidra for 5 days to get me through the weekend. Along with that, BIO tears 4 times a day and Bausch and Lomb "Soothe" ointment overnight. Wow! Except for extreme burning sensations when I first put the Xiidra in my eyes, my eyes started feeling so much better. I was able to do some reading, TV, etc.... What a relief! Went to the pharmacy to pick up prescription for my Xiidra today. They told me my insurance had denied it. ARE YOU KIDDING ME? Went back to ophthalmologists office to see if they had more samples to tide me over. No! They will try to fight it out with insurance but it could take days, weeks or possibly never. Meanwhile, my eyes have already started hurting again. And as banditwalker pointed put, NO WAY I could afford this medication. It is ridiculously expensive. Let's chalk up another one for big pharma and the insurance industry. They don't care that peip!e are suffering. Like I said, one thing that relieves my eyes is real tears. That hasn't been a problem today! And, yes, my ophthalmologist said there was a definite connection between chemo treatments and "eye issues".

banditwalker

Bengal, once the eye docs office got the paperwork to the company, RX Crossroads, it only took about 3 weeks. I thought it was rather fast. I mean, it was worth the wait. No one at the eye docs office warned you how much it costs? I mean, you must have known it was going to be very expensive so it shouldn't have been that big a shock. Some scripts are expensive and big pharma is to blame blah blah blah, but I don't have time to blame anyone. I'm too busy doing all I can to help my eyes in the meantime and I'm just glad I'm not blind. Xiidra is not a cure all but it is helping, it may even stop working one day. I believe it's something I'm going to have to learn to live with for the rest of my life. Just like the rest of the folks that came before me.

Bengal

No! No one at ophthalmologist mentioned how expensive this treatment was. Came as a complete shock to me. I guess they just assumed on their recommendation it would be approved. It is utterly ridiculous how expensive pharmaceuticals are in this country. Having found a few days of wonderful relief after dealing with weeks of wanting to pluck my eyes out of my head it is really tough to be told I have to go back. Sure, I am glad I'm not blind! But trying to get through a northern winter without being able to read, do jigsaw or word puzzkes, watch TV or spend more than a few minutes with any screen device is frustrating as heck. If the Xiidra doesn't get approved (soon) I will go out of my mind.

MarcieB

This is maddening! Did your insurance company give you a reason for refusing it? (like they care...) I am honestly praying this goes through quickly for you. I can't even imagine the frustration. It's so wrong! I remember hearing a lot of warnings about the side effects from chemo, but I don't recall having heard anything about eye issues. But, we can't really say we are surprised, right?

banditwalker

Bengal, my eye office filled out financial aid forms for me. A company called RX Crossroads are the ones that actually took care of the RX approval end. Insurance was not involved. In other words insurance was bypassed all together. You have to qualify so there's that. I had to provide my income info. It may be your other OTC drugs you are using that is providing relief. Xiidra can take weeks or months to see any improvement. In the meantime, go thru' the process. Also google Xiidra Savings Card. It's a coupon you show to the pharmacy and you get a discount that works in conjunction with your insurance. There are options out there. Just gotta do some digging.

Ashera

Bengal, I'm so very sorry. My eye Dr really has been steering me away from wanting a prescription drug. I'm just trying to find that combo that mostly works. Now I understand why. I'm wary of any drug that has a commercial or a full page ad. They'll be more than my rent.
Something else I do, eye dr approved - is I take two big flaxseed capsules a day - one of the omegas. I see a difference if I don't. I also sleep with a humidifier going in my bedroom so the air stays moist. Heat going will evaporate your eyes quickly and the air here in MN is so dry in the winter.
Try not to cry real tears! They really don't help your eyes either in the long run.

Bengal

MarcieB, the pharmacy said the notation said "available OTC". I presume that meant that I should seek relief with OTC offerings. News Flash. I've been trying that for months with no significant relief at all. In fact the situations kept deteriorating hence the doctor's recommendation of the Xiidra. Thanks for info banditwalker. If my ophthalmologist gets nowhere I will definitely be looking into it.

Carool

banditwalker, I came up with the chemo blaming for my tooth loss, but who knows? It could be partially hereditary, for me. My cousin had a similar problem, and she never had chemo (or cancer).

Carool

Bengal, our exhorbitant drug prices disgusts me. Maybe, if they didn’t spend a fortune on their movie-length TV commercials, they could lower their prices?

Carool

MarcieB, good idea re starting up the book recommendations. Thank you. I’ll post a question.

Bengal

I had alot of anger going yesterday. It's something I fight everyday to control. Today I have a telemedicine call with mental health so hopefully that will help me get this situation into perspective. Ashera, I'm curious as to why you suggest avoiding real, genuine, produced by my own body tears. I would think that would be better than any of the "faux" offerings bought in the drug store. I mentioned to my eye doctor that I had found my own tears very soothing. He did not say anything negative in regard to that.

Ashera

Bengal - there are certain hormones our tears produce when we cry - different from the everyday wetness the eye usually has. Those differences are what causes your eyes to become red, inflamed and sometimes swollen - even burning afterwards. Not sure where I learned this but for me, I know if I cry - it's going to make matters worse.
And seriously good on you lady!...for calling for mental health. I lost my 'talk guru' as I called her a year ago - and I seriously need another avenue. This weekend marks 6 years since my son died of glioblastoma multiform at age 32...He came out of remission the very DAY...I was diagnosed with breast cancer. He was an awesome partner to go through chemo with. But towards the end of my rounds, and before I had surgery - he went on hospice care. But while we shared bald jokes and whatever food didn't taste dreadful - I consider those many months one of the greatest gifts ever. I've got a younger sister in an Alzheimer lockdown unit in TX right on the edge of breathing her last. And...I've got an exceedingly mean, abusive, mother - in another facility in TX with late stage dementia. My phone rings in the nighttime frequently so I've got this 'sharp edge' to me. I try to pick my targets. It can take very little to tip me over to irrational anger and of course I know that's not good. I do take Lexapro - 30mg, and have for several years. It seems to 'flatten' my emotions so I stay a little more even.
I have no other family.
Just some lovely friends of the heart - scattered around - and a support system here I do not take lightly!!!