Many friends with cancer report having problems with their eyes.
I found it can be scary when Oncologists brush aside our concerns.
No-one warned me eye problems might be a side effect. A week after starting Tamoxifen, when I woke up, all I could see was a greyish-yellow film across my right eye; nothing else.
Thinking the worst, I rushed to my Oncologist; he told me “I’ve never seen this before – I am sure it isn’t anything to worry about”.
Oh yeah? The callousness of some medics defies belief.
Phoning Revd. David Brown, ex-Chaplain at the Royal Marsden Hospital, he told me “yes, a certain percentage of patients on Tamoxifen do suffer from blindness, but generally it disappears within two months”.
David was right. So if he knew, why didn’t my Oncologist?
He recommended I went to see Michel Guillon, a French specialist from Nice, (and a devotee of Garibaldi (also born in Nice). He had held a senior position at Moorfields Eye Hospital in London, and knew all about Tamoxifen – and he wasn’t an Oncologist!
Prof. Guillon said it is possible in a very, very few cases to get Tamoxifen poisoning, but this is rare. After subjecting my eyes to a fascinating range of high-tech tests, he said in my case it wasn’t Tamoxifen poisoning, and eventually my eye-sight would return. Phew! And he was right, but I still have eye problems but nothing like as serious as the first.
Eventually I was changed over from Tamoxifen, and ended up on Aromasin. Same vicious side effects, but this time my eye was red and painful, and I needed steroids to stop the pain. Several were tried, but the one that worked was Dexamethasone (Maxidex). This worked extremely well, and I was soon able to stop taking Dexamathasone.
Once the course had finished, I was recommended to use Rohto, an over-the-counter remedy, and now, if I feel a recurrence, I just use Rohto again.
Behaving like children
What shocked me when I had problems with my eyes was the attitude of doctors. We only have two eyes, so they are very precious. If one goes, the other could be lost in an accident – and then where are you?
Seeing the Oncologist at the Cromwell Hospital, and him saying he had never seen Tamoxifen causing blindness was incredible. He must have read up the original clinical trials, as the Chaplain had done.
Then when the second eye problems turned up, again I was shocked at the way the eye specialist I ended up with at the Royal Marsden was so dismissive of Prof. Guillon. Later I took the greatest delight in sending an email with information about the well-documented research and papers that Guillon had produced. On my next visit the specialist was so polite!
So don’t let doctors brow-beat you. They don’t know it all, and those that won’t listen to patients aren’t helping those of us with cancer. Those who do listen – such as Michel Guillon – are treasures, and their expertise and reassurance are an incredible support.
Cancer Research UK says
Eye problems are possible long term side effects of tamoxifen, but “they are rare. There have been reports of visual disturbances including corneal (front part of the eye) changes and retinopathy (non-inflammatory damage to the back of the eye, the retina). Most eye problems go back to normal once Tamoxifen is stopped. But blindness has occurred in a small number of people. People taking tamoxifen are also thought to be at an increased risk of having cataracts (cloudy patches in the lens of the eye)”.
‘Dry Eye” is a recognised side effect from drugs; causing soreness, burning, irritation and dryness.
An excellent eye-soother for our eyes is Rohto. Along the way of my cancer journey, I keep on being put on different drugs, and they often produce runny, wet, painful eyes, with gritty residue that sticks up my eyelids.
Emma, who works for a medical PR company, recommended Rohto. Knowing that her company tends to promote products that are medically-approved, I tried it out.
The liquid comes in tiny little plastic ‘bottles’, with one day’s dose in each. It has a re-usable cap so you can carry this around in your pocket and use during the day. After about three days, I suddenly realised that runny eyes disappeared.
Now, I no longer woke up with my eyelids stuck together, and the pain had gone. Bliss! As the lotion is very gentle, I keep it in the medicine chest and use it when I have painful eyes. Rohto is sold around the world, so ask a good pharmacist for the drops.
This comes from the Clinical Advisor, a magazine for doctors and medical staff:
“I encourage patients using ophthalmic solutions for allergic conjunctivitis to store the drops in the refrigerator for even more soothing results”. — Donna Mariano, FNP, Wallingford, Ct. (161-7) So probably worth trying for any of our eye problems, if you ask your advisor first.
Brows and lashes
If you lose eyebrows and eyelashes, they usually grow back again, but may be sparse and sandy. Talking to doctors at the French spa of La Roche Posay, famous for their cosmetics that help patients with birthmarks and burns, they gave me a tube of their mascara they have developed for cancer patients (trust the French to understand what women want!). One end had a white thickening gel, the other a brown colouring. Used together, I looked into the mirror and film-star eye lashes appeared like magic!
La Roche Posay products are just starting to come in to Britain, and you can find them in major Boots stores. Or you can try any good chemist in France, Spain, Italy, or mail order: O’Connell’s Pharmacy, 2 Grafton Street, Dublin 2, Ireland Tel: 00 353 (01) 679 04 67.
After all the stress, you are bound to have lots of lines under the eyes. Elemis sent me their Pro-Collagen Wrinkle Smooth pen to try out. Cynic that I am, I tested this under one eye, and, after two weeks discovered, as they say ‘lines were visibly reduced’. So I stopped being a cynic and use it under both eyes!
Another good rescue remedy is iS Clinical’s eye cream. See under Face category for contact details.