Forum Discussion
Tamoxifen to blame for my eye troubles?
I've have been on Tamoxifen for about 8 months and am 54. In the last couple of weeks my left eye has suddenly gone like a mosaic of snow flakes in vision (comes and goes) and my optometrist found a blood clot blocking one of the veins behind my eye. It looks on her screen like an embryo of an egg, you know with the red spot in middle of a vein?
She flew in to a panic, wrote a scribbled referral to my GP who on Friday afternoon was off at golf so I saw another GP in the same building who didn't really have a clue what to do so she rang the emergency Dr at the general hospital who said they don't have an eye specialist there and we would have to travel from Burrum Heads to Brisbane to get it looked at. Brisbane was supposed to ring us with an appointment but to date they never did. It greatly upset both me and my husband as it sounded like I had a clot and was going to die or something which I am not. I got on to a private specialist in Hervey Bay who said the earliest appointment is end of January. Still with me?
Anyway, I have found what it is. Central retinal vein occlusion or CRVO. There doesn't seem to be any curing treatment, just management. I also looked up side effects of Tamoxifen which do list eye troubles in their side effects. Since I have low not high blood pressure and no heart troubles and my cholesterol levels although elevated slightly were not in the too high category I am thinking the eye trouble is from Tamoxifen?
I will get on to my oncology specialist tomorrow for an appointment and see if we can switch from Tamoxifen to something else which hopefully will not effect my eye.
Has anyone else had eye troubles like mine on Tamoxifen?
She flew in to a panic, wrote a scribbled referral to my GP who on Friday afternoon was off at golf so I saw another GP in the same building who didn't really have a clue what to do so she rang the emergency Dr at the general hospital who said they don't have an eye specialist there and we would have to travel from Burrum Heads to Brisbane to get it looked at. Brisbane was supposed to ring us with an appointment but to date they never did. It greatly upset both me and my husband as it sounded like I had a clot and was going to die or something which I am not. I got on to a private specialist in Hervey Bay who said the earliest appointment is end of January. Still with me?
Anyway, I have found what it is. Central retinal vein occlusion or CRVO. There doesn't seem to be any curing treatment, just management. I also looked up side effects of Tamoxifen which do list eye troubles in their side effects. Since I have low not high blood pressure and no heart troubles and my cholesterol levels although elevated slightly were not in the too high category I am thinking the eye trouble is from Tamoxifen?
I will get on to my oncology specialist tomorrow for an appointment and see if we can switch from Tamoxifen to something else which hopefully will not effect my eye.
Has anyone else had eye troubles like mine on Tamoxifen?
22 Replies
- Great news Brenda. Such a relief.
- Optometrist specialist visit today and my eye vein blockage seems to be fixing itself. He won't have it that its the low dose aspro fixing it lol. I think its just a side effect of last years chemo and a bit of cholesterol broke off in my arteries while I was not eating much for 3 months and it floated around until it found a spot to get stuck in. The eye is slowly dissolving it and so far no signs of glaucoma starting. Its still grossly annoying when I bend over and the vision in one eye turns to snow.
- Hi girls , I was on Tamoxifen 19 years ago after my first diagnosis of breast cancer . I lasted 4yrs and then delevoped some scant bright P.V. bleeding which after seeing a gynecologist, had a fibroid which had grown quite large removed. The doctor said it was a side effect from the Tamoxifen.I should have been on the drug for 5years but didn't continue. Now I have been living with metastic breast cancer for nearly 5 years. My oncologist said it was a shame that I could not have continue on the drug as now they are saying 10 years is more appropriate time .. She said it is a very good drug if the side effects are not worrying you. She would not say that I developed the metastic B.C because I had stopped the Tamoxifen early. But I am surviving , and each day is a bonus.
- That could be entirely the case @melclarity , instead of a 54 year old some aspects of my body are now 64 years old.
- Oh Brenda,
What an awful ordeal youve had to go through with Doctors and Specialists to no avail. Seems your Optometrist was quite thorough which is great! in terms of the eye itself. Just wondered, there are so many things that could attribute to the eye problem, and so frustrating for you to have gotten nowhere. Sounds like you have a good plan right now that is helping. I really hope it settles or that you find the answers, gosh I know the things that pop up since going through treatment is crazy! this could be something completely different too, as in unrelated but thats the million dollar question isnt it?? My Optometrist said definitely not my eye probs due to 4yrs of Tamoxifen or Chemo, that they are just in line with normal aging, whilst thats good news, I still feel that it was propelled by Chemo. Keep us updated!!! Hugs!!! that it disappears as quick as it started!!! Melinda xo - Agree a return visit would be beneficial.
- I would return as it's good for them to check for improvements or progression.
- After 2.5hours and 6 different sorts of drops he offered no real explanation apart from it 'might' be 90 day glaucoma? I was sent home with no meds, no drops no nothing and told to come back in 3 weeks on the last day of their office being open before the Christmas break.
I told my mum and she said to take low dose aspro which I have started. I am also taking bio magnesium and vitamin C. I have modified my diet and bought some moisture drops for my eyes.
I am not sure if I will bother attending the next "specialist" appointment as it just seems a way for them to drum up business without actually curing anything at all.
Its only early days but my eye has settled a bit on the aspro, etc. and I can at least bend over and pick something up off the floor without having a blind spasm. When I get up of a morning now instead of grey snowflakes in one eyes vision, I just get a flickering off to one side.
I don't have high blood pressure. I don't have diabetes. My eye pressures with specsavers was good. The private specialist didn't say if they thought they were good or bad. He said I had thin retinas but didn't offer an explanation why and my 20 questions of is it from chemo, Tamoxifen, etc. didn't yield anything except, no, no, no.
Oncology said I haven't been on Tamoxifen anywhere long enough for it to be safe to stop taking it and the alternative ones also carry eye disorder warnings. - I was put on Tamoxifen today and there was a spiel on both looking out for eye problems and clotting. If there's nothing else that could be causing it I think suspicions about Tamoxifen are reasonable.
Keep us updated with what the optometrist says. - I was on Tamoxifen for 4yrs, then Recurrence last year, and 4.5 months of Chemo and Started Arimidex in January. My eyesight has deteriorated rapidly, and I went and had them checked thinking OMG Chemo did it!!!!! but the Optometrist said they had slight deteriorated, however not from Chemo or anything else other than a normal aging. Uuugh!!!! but Im not so convinced really...Ive aged 15 years I think!!! in every capacity since doing Chemo!!!!
