For the last 3yrs I have been meeting with the remarkable Manchester W&M group and thought that it was high time I joined the Macular Society!
I was diagnosed at St Paul's Eye Research Unit at the Royal Liverpool Hospital with choroidal melanoma (eye cancer) in 1994 after being under frequent observation since 1978 thanks to an astute optician. In 2006 the tumour was seen to be growing, I underwent ruthenium plaque brachtherapy where a radioactive button is sewn onto the back of the eye and removed after several days. The tumour is now dead but all of us with this condition are at v high risk of incurable secondaries. After a further 3yrs I went blind in the eye. Eventually, referred back to Liverpool where the brachytherapy was carried out cystoid macular oedema was diagnosed, I received my first Avastin injection and within hours useful vision was restored. Now, 6 1/2 years on I receive Lucentis injections. I had my 59th a few days ago.
Due to the high risk of metatseses, secondaries, I undergo 6 monthly MRI scans with contrast and weighting at the Experimental Cancer Research Centre in Southampton General Hospital.
Welcome to our club. It is good to share our experiences, and offer tips and support. It has helped me to bring things into perspective. You certainly have gone through the mill. I hope everything keeps going well for you, as well as can be expected under the circumstances.
Thanks, I continue to cling onto the wreckage. The alternative doesn't bear thinking about. 😮
In reality, I fare much better than most with OM 52% of whom never make it beyond 5yrs and as North Region patient rep' for the only UK eye cancer charity OcuMel UK I am sad to say I see the effects close hand. The young parents are the most heartbreaking, two so far this year and two more who have reached the end of their treatment options. There are no cures, only palliatives, and even then only if you are lucky.
That is so sad, Rannakt. My heart goes out to you and your fellow sufferers. compared to your problems, most of us are very lucky even if it not always seems that way. Best wishes from ayayay80
Hi rennatk, sending you a hug x
So sorry to hear what you have gone through and continue to endure x Your strength is a beacon to us all x
Wishing you all the best going forward, glad the inj have helped with the vision a bit. Take care xxx
Well done Rennatk. Your courage and determination does you proud. Keep clinging onto the wreckage!!! I hope to be able to contribute with information soon.
Good luck,
Many thanks for your wishes but I have to say that I have had an easy ride compared to many with ocular melanoma.
It is a v rare cancer affecting no more than 6 persons/million worldwide. Approx 600 per year across the UK. 48% of whom survive beyond 5yrs.
Despite some wild claims by even ocular practitioners,the condition is not caused by exposure to the sun. If that were the case there would be vast numbers in places such as Australia or South Africa. In fact, the figures there are identical to the rest of the world. The one exception is in South Asian populations where the condition is v rare.
The cause of OM is as yet unknown but in the absence of any other evidence there are speculations that there might be a genetic correlation.
Because we are so few and have a tendency to pop off at short notice, it is difficult to take part in meaningful research studies. Drug companies get miffed when more than half their research base is no longer around before they reach the end of the trial! Also, we have discovered that in the past many futile trials have been instigated for the benefit of researchers and not we patients. Nowadays we have become more aware and refuse to participate in such futile studies.
Metastases from OM are terminal because we move directly from Stage 1 to Stage 4. Currently, only palliatives measures are available but these do not work for all patients.
Because my tumour was too thin to biopsy when I was treated over 10yrs ago I do not know if it is malignant and likely to spread. Big strides in biopsy techniques mean that nowadays sufferes can have the tumour biopsied even if it is less than 1mm thick. Consequently, I have 6 monthly liver scans using MRI with contrast and weighting assessed at a specialist unit at Southampton General Hospital in the hope that any tumour burden can be picked up early giving a better chance of palliative treatments working for longer.
My apologies for typos but my close vision is compromised as a result if OM.
Hi Renatk, I had not heard of your condition before and I have found your posts very informative; thank you.
It is amazing what we can endure when we have to and to make something positive from your experiences by helping fellow sufferers is an inspiration. I am sure people say to you, as they do to me, that you are brave, but they don't understand that we have no choice in the matter and simply have to go along with the treatments and tests because the alternatives really don't bear thinking about, and so I suppose we must sometimes appear to be unnaturally pragmatic about our situations. People at my dance class are quite used to me turning up straight from theatre after a Lucentis injection, complete with eye patch, and I think it does help to carry on life as normal as far as is possible. I think if I stopped and rested for a couple of days after each injection (which is tempting), the treatments are so frequent that I would do nothing else.
In the same way that you work with fellow sufferers and it makes you realise that your own condition could be much worse, reading your post today has helped me to get my wet AMD/myopic CNV into more perspective and I don't feel so hard done by any more.
If I was wearing a hat, I would take it off to you! Keep up the good work and I wish you many, many years of continued good health x
That is v kind of you but as you say we get on with it, the alternative doesn't bear thinking about.
As I have been around eye cancer for so many years, 38 if you count the original assessment years, it means I have a fair amount of experience to pass on to newbies with the condition which helps to bring them up to speed and hopefully allay a number of unfounded fears.
Interesting that you have a patch after your injection. At Liverpool I had a patch after my first poke in the eye but thereafter I simply wander off home by train just wearing sunglasses, assuming I have remembered to take a pair! x
I suppose the details of our treatment varies a little and I must say turning up at my dance classes with an eye shield was certainly a talking point (at first anyway). It is always a bit of dilemma when people ask what I have had done; I usually just say a minor operation because I simply can't bear the look of horror and sickly tinge on the faces of people when I tell them I have had an injection into my eye and I would have felt just the same a couple of years ago before all of this wet AMD started.
I think I may take a leaf out of your book and volunteer to do something for the Macular Society; I reckon it's time for me to start giving something back. x
The MS are very well organised with many active groups but there is always room for volunteers to talk to newbies and tell of their experiences. I hope you do decide to get involved with them. You will also meet some remarkably resilient people.
Eye injections are getting more common. Recently I reassured 3 acquaintances with wet AMD who were rejecting the very idea. Happily, although one who had only one functioning eye since childhood had severe discomfort he persevered and after 4 shots was able to drive again.
When after the 4th shot his vision came back quite suddenly he and his wife rang me late one evening absolutely bouncing, so much so that it took me a minute to understand what they were ringing about!
What a wonderful, heart-warming story and how satisfying it must be to have made such an impact on that couple's life. Yes, I shall give the MS a call in the morning x
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