"Ocular Melanoma Patients Share Their Clinical Trial Journeys"

[@dianesilverstein6475]

Thanks to all of you for this webinar content and for being in these trials that will help others. ❣

[@marypiccolo7160]

Awesome people! Thank you!

[@HelenWatts-q1h]

My usual optician found a 'lesion' in the back of my eye in 2020, when I just went for an eye test for glasses, as I had every year for my whole life. They watched it get bigger over the next 4 yrs and finally in January this year I got an apptmt at the hospital eye clinic where they barely looked at it and said it was probably nothing. In May (5 more months later) I had another apptmt where a different doctor did an ultrasound and was angry with all his staff for missing the signs. He got me into Moorfields in London within 2 weeks (there are only 3 hospitals in England which treat choroidal melanoma.) I had brachytherapy in June this year and that is all. No biopsy offered, no scans offered, I was just told the treatment I would have and on the actual day I thought I would be cured that day, I had no knowledge of anything called 'metastasis' and no info about side effects until I was asked to sign the papers on the day of the first operation. I had NO CLUE how horrific and painful it would be. I was in agony for the whole week, and now, 5 months later, I can't see out of my treated eye, my vision is completely blurred, everything looks red, double, and it hurts all the time, and the white part of my eye is all red and pink and swollen right up to the iris. I can't open it as much as the other one, I can't look up much, it aches all the time and ever since the ops I have had to wear an eye patch all the time, as if I try and use two eyes together the double vision is SO way out that I can't see a thing. I have had all the eye drops to treat the red sclera and nothing worked. Moorfields just say "see you again in 6 months." Mr. Damato phoned me after the ops and I told him how bad it all was (I could also feel the needles and the surgeon shouted at the anaesthetist "Do some more then!") I was terrified, and had no information and no follow up support. On our cancer forums here (like Macmillan) nobody has put any posts on this as nobody has it. It has grown half a millimetre in height in 3 months, (it is 10 mm wide) but they still say there is nothing they can do. I have also lost over 3 stone in weight in the same time. There is no help for this in the UK, and Mr. Damato knows this, and he was very apologetic to me. He was very kind, but helpless to do anything.

[@acureinsight4912]

I am so sorry to hear how horrible your experience has been and yes, ocular melanoma is a very rare cancer so it is not surprising that they really aren’t offering you real options. Stay tuned to this channel and browse through our videos because perhaps, you might find some useful information from one of the doctors here in the United States that you could address with your physician there. Feel free to reach out any time.

[@acureinsight4912]

Helen, also, I am going to reach out to some of our team to see if anyone might have some suggestions that would be helpful for you.

[@HelenWatts-q1h]

@@acureinsight4912 Thank you ever so much. And yes, I have been watching all of your videos, and now I eagerly watch for a new one every day! Your organisation is a great help to me. God bless you all.

[@HelenWatts-q1h]

@@acureinsight4912 Thank you. I just wonder if i could mention something else - I have some unusual symptoms in my bowel, that I've never had before, and I have put it off, but today I read on google that "Mutations in the BRAF gene have been linked to several types of cancer, including melanoma, thyroid cancer, and colorectal cancer. These mutations can lead to the overactivation of the B-Raf protein, which can cause cells to grow and divide uncontrollably, leading to the development of cancer." I think I have read that BRAF is one of the mutations that increase choroidal melanoma aggressiveness. Do you think the two are related? I am too scared to go to the doctor, as I am embarrassed, I just wondered if choroidal melanoma ever spread to the colon that you know of? Thank you so much.

[@dianesilverstein6475]

How do I find out about available trials?

[@acureinsight4912]

@@dianesilverstein6475 check out our clinical trial finder on our website under the metastatic tab. You can do a search under uveal melanoma. acureinsight.org