Keracatonus Cross Linking C3-R® Help!

[ux2]

Hi, I have recently been diagnosed with Keracatonus by my optician; it is at the very early stages as my eyesight was ‘perfect’ last year according to my optician’s records.

Now I have slightly double vision and want to get the eyes treated, I wanted to ask a question about the ‘Cross Linking’ treatment.

Can eye cancer be developed as a result of this treatment I the future? As Ultra Violet light can cause this.

[pepepepe]

Like with most medicine animal testing was done and passed for patients to be treated since 1998

The B2 which must enter the cornea sufficiently, which is the set parameters worked out in the animal studies is needed to block the UV enough to create the stiffening effect safely as well, this is why patients as long ago as 1998 was treated and no harm has yet to be found with in the guidelines used

If your worried with any aspect, just don't do the procedure or any procedure, there is even risks with contacts, but it can be treated.

Best

[Andrew MacLean]

As Pepe has said, there is no such thing as a completely "risk free" treatment. What we have to do is weigh risks against benefits and make up our minds in the light of what we find.

I would once have said that the possible benefits from CXL would outweigh any possible risks; now I am less sure. There are others on the forum who take the view that the benefits so far outweigh the potential risks that accepting the treatment is a virtual 'no brainer'.

However, you should be aware that CXL is not approved by the FDA in the United States, and is not yet approved by NICE as a treatment that should be universally available to patients on the NHS in England and Wales.

All the best

Andrew

[Lynn White]

ux2,

If your keratoconus is this early, then the best thing to do is take your time and read up about CXL (C3-R) as much as you can. No-one has any idea about eye cancer though the levels that are used are reckoned to be safe as far as current regulations are concerned. No-one can know this sort of effect unless the procedure has been around for at least 20 - 30 years!

The truth is we don't know the long term effects of CXL. We do know the long term effects of keratoconus - IF your KC is aggressively progressing. So generally it would be wise to wait and see if your keratoconus gets worse before making any decision.

Of course, some people who have a strong family history of keratoconus may decide that they should have it done as soon as possible. In the end, every person is different and has different needs.

I have started a CXL club website and a forum so people can ask those who have had CXL done some questions. it is very new so not many people on there yet and not all the information I would like, but I am getting there!

http://www.cxlclub.lwvc.co.uk

Lynn

[pepepepe]

Where do you get this figure of 20 to 30 years ? and alsi few posts back you was saying 30 to 40 years.

[Lynn White]

Quite right Pepe, I did

Actually I did put 30 - 40 in this post but then changed it to 20 -30 on reflection. This question was specifically about cancer. I think the other time we were talking about it was about whether CXL works long term, but I am willing to be corrected because I post on many boards and sometimes lose track of what I have said where (I am only human!).

I mention 30 - 40 years in relation to the effects of CXL simply because it took that long before the full effects of wearing the old PMMA rigid contact lenses fully came apparent and prompted the switch to RGPs and softs in the 80's. The long term effects of any procedure have to take into account ageing and by default, that has to cover a period of 20 to 40 years AT LEAST. That is all I meant! Any new procedure faces the same problem - many people worry what implications IVF may have on the children produced this way long term but we may have to wait 80 years before hand on heart you could say it had no adverse effects. You can't study this until the actual time has passed.

Now as to UV induced cancer, I reduced it to 20 - 30 because this can turn up in relatively young people who are susceptible, so I would have thought, in a purely common sense way, that this is a reasonable time scale for something to show up if it is going to. However, this is total conjecture, I admit, because no-one knows because it is a new procedure. My post was trying to show that there are no easy answers to some questions.

In fact there are no easy answers in medicine at all. The truth is, humans are truly diverse in the way they react to disease and the methods of treating them. If this were not so, then most of the discussion on these boards would be null and void - there would simply be one way of treating anyone for anything. Its that fact that we all react differently that creates the difficulty of being able to predict long term benefits or adverse effects.

Lynn

[pepepepe]

For someone stumbling on a new treatment, it can be "shock, horror" as its new to them, as they don't know certain details already worked out by those who know, the person may "think" they know but actually you need to get a medical consultation to get the right facts, that's what it is for. Those who are qualified to answer are those who has the experience to explain and also have the medical training to understand.

If we compare contacts lenses with another treatment, it is like comparing apples and oranges, ... its quite simple.

And if we look at your analogy and continue with it, you could say that the effects of wearing Kerasofts may come more fully apparent in 30 to 40 years, or if you like, 20 to 30 years or even much sooner.

There is no one "treatment" which is the done thing to do or not to do AND which can definitely be said from afar. And really we must be qualified to talk when really its between someones own Ophthalmologist and the patient, as only they will know the details in full, the readings ect. I received a PM from a parent who will be getting CXL treatment for their teenager by their very own NHS eye Dr, which was something discussed with them at the first port of call when they met him. We can't scaremonger innocent people taking advice from their own medical Dr who works for the National Health Service. Are you saying Dr's are not doing their Job ?

And if you think back to the last conference, the head of Optometry at Moorfields said that "contact lenses IS NOT a treatment, it is just a VISUAL AID ONLY, you was there listening to it. What a wonderful optom he was too, saying things as it is, its what I would expect from a non-profit.

[Lynn White]

Hi Pepe,
Sorry to have caused you this confusion! Let me try and clear things up. My point is that no-one can say anything about the long term effects of any treatment for anything until it has been monitored over the life time of a human being. So no-one can answer the question ux2 was asking, which was "can this cause cancer in the future?".

All one can say is that studies so far show it to be safe and effective over a period of 11 years, which is actually quite long as such things go. Again, I seem to have confused you with my reference to contact lenses. I was not comparing CXL to contacts, I was giving an example of what I meant but in a different field: in this case contact lenses. PMMA lenses were thought to be fine until after effects started to turn up, sometimes only after 30 years wear in some people. I was trying to show that we cannot predict effects that may take years to show up - but if we wait a lifetime to approve something, no progress would be made at all.

And in the case of PMMA lenses (which actually have ZERO DK, i.e. do not allow ANY oxygen through the lens at all!) there are still people happily wearing them after 40 years which also shows that any problems that do show up after this time do not necessarily affect everyone. So to be clear, anyone deciding about CXL has to make decisions based on information produced over the last 11 years - that is all anyone can do. And such information is very positive.

Many people who come to these boards for extra information are worried and ask questions that really, if they thought about it for a moment, really cannot be answered by anyone - let alone anyone who does not know their individual case. Just getting the questions vocalised, though, helps to start the necessary process of coming to terms with the diagnosis.

I am the first person to say go and talk to your health professional - but time with them is very limited and often questions arise long after you have left the consulting room. These boards offer a sounding board and a place for healthy discussion - long may it last!

However, all of this is distracting from ux2's original post: the main point being that his/her keratoconus is very early and may not even progress. ux2 - Can you tell us more about your double vision? Are you wearing any spectacles? It may be that a spectacle correction reduces your double vision effect at this stage.

Lynn

[Andrew MacLean]

Lynn is, of course, right. It would be a foolish professional who set out to give assurances about the permanent safety and stability of any treatment or management regime until, at least, there was a body of data covering the whole-life experiences of people who have been given the treatment.

I have never seen, in literature or on the www, any eye care professional saying that lenses or CXL or transplants or INTACS or Mini ARK or any other treatment is risk free. Some people who have had one treatment or another have, at times, in their enthusiasm suggest that their favoured treatment is effective and without danger, but professionals take a more measured approach.

In the end it is the patient who has to weigh the possible risks against the potential benefits. It may be that they are not helped in this process if we give too enthusiastic an endorsement to any particular approach against any other.

Q Can CXL cause cancer?
A I do not know.

Q Is there evidence that CXL has caused cancer?
A I have seen none.

There are other potential contra-indications for CXL, so it is important that anyone contemplating such a treatment should speak at length with the ophthalmologist who is offering the therapy to be sure that all known and possible risks are understood and weighed against the potential benefits.

Among the potential benefits is the stability of the treated cornea for over a decade.

What we come back to, then, is the question of whether we would have the treatment if our own condition was at a stage when benefit could be expected. I am currently of the view that I would not accept this treatment; others who post here would give an emphatic 'yes' to this question.

It is a hard issue for us all; Lynn's CXL club is one way in which people can be helped to form their view about the appropriateness of this treatment, but it does not make anyone's decision for them.

All the best.

Andrew

[pepepepe]

One point I did not write in my post was, say the figure was 20 years for results to be called long term, if there are for 1l years, wouldn't another 9 years make it in total 20 years ? and so a quote of another 9 years said ? with every year this figure coming down.

And where does this figure of 20 to 30 or the 30 to 40 years (which ever is just type out with out a reference) come from ?

The UV used is UVA, that makes a difference when there is wrongly bunching up of all types of UV done due to lack of knowledge - that has not been said. This is why I said someone medically trained is the best route to find out the facts.

"My point is that no-one can say anything about the long term effects of any treatment for anything until it has been monitored over the life time of a human being."

My point is that their is a difference between "effects" and "safety", effects is effects, safety is safety, and that it should be said on the end of what you said (I write in bold)

"My point is that no-one can say anything about the long term effects of any treatment for anything until it has been monitored over the life time of a human being" but once you get diagnosed with KC you do have to go to frequent checks ups anyhow, so its not nothing new.

If we look at safety, what treatment has there ever been where someone should wait until someone who had the treatment has died of natural causes ? can that be listed ?