Iris melanoma

FormerMember
FormerMember
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Hi , just wondering if anyone else is or has had any issues post proton beam therapy .

I had my treatment the first week of March and although my eye was a little sore immediately following treatment I soon settled , however approx 6 weeks post treatment my eye started to get sore and irritated so I contacted my GP for drops but they didn’t seem interested and didn’t prescribe drops so I contacted Liverpool who told me what drops to go so I then brought these myself from the pharmacy and they didn’t really help it just continued to get worse . 
I contacted Liverpool again as my local hospital said I’m not on there appointment list until June ( this was for my 6 weeks post op checkup) Rolling eyes. Liverpool then contacted my local hospital and they agreed to see me but the consultant said he wasn’t concerned all looks normal not irritated or dry OMG my eye is so blood shot and vision is blurry most of the time which really scares me . He said go to the opticians but I don’t think a pair or glasses will fix this and because the level of blurry ness seems to change depending how sore my eye is makes no sense . I’ve been using the steroid drops my local hospital provided plus artificial tear I brought but nothing is helping 

  • Hi

    I'm sorry to read about the problems that you've been having with your eye since having proton beam therapy. 

    I don't have any experience myself but noticed that your post hadn't had any replies yet so I'm tagging and into my reply to you as they have recently had the same type of treatment to see if they might be able to help you further.

    Have you followed up the consultant's advice to see your optician? Opticians are highly trained to deal with all sorts of eye problems and they may be able to suggest something to help.

    Do come back and let me know how you get on.

    x

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  • FormerMember
    FormerMember

    Hey Taz,

    I’m sorry to hear your having a rough time with it all.

    I’m 2 months post proton beam therapy and unfortunately I’ve lost all vision and now have glaucoma. I became really unwell with the headaches in the past month, they put it down to having Glaucoma. I think the next step is getting the eye removed, but they want to wait and see how the proton beam has went. I’ve just experienced problem after problem recently tbh, but I think I’m one out of very few as it’s very rare to experience all this

    I hope you start seeing some results with the steroid drops soon, I think it will calm down eventually!

    Regards

  • FormerMember
    FormerMember

    Hi taz hope you are OK sorry to hear about you having problems after treatment I had similar symptoms 6 weeks after my treatment I had a emergency appointment at my local hospital who said that I had very dry eye I had my treatment in January but for the last 2 weeks my eye has gone bk to normal no bloodshot or watery just feels like I have constantly got grit in my eye my follow up appointment is 9 June please let me know how you get on 

  • FormerMember
    FormerMember in reply to FormerMember

    So sorry to hear of the issues your having , it’s very scary when it comes to issues with your eyes , I was feeling like I had been encouraged to have the treatment but then left  to deal with whatever happens on my own. My 6 week follow up at local hospital was going to be in June which is nearly 4 months after treatment , i only got this earlier due to issues I’m having and they weren’t concerned but that doesn’t help when they say it’s not irritated and can’t see a problem , I can hardly open my eye at times . 

  • FormerMember
    FormerMember in reply to FormerMember

    I expected quite a lot of complications due to it being in the choroid I think you guys have it in the Iris if I remember correctly? Aww that’s so awful, I can imagine I know exactly what you mean it’s just so awful isn’t it. Yeah please keep me updated how you both get on and if it starts to improve. I know it can be isolating at times. Fingers crossed it all gets better for you!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Shirley , I was expecting some dry eye post proton beam but they say it continues to work for 6-8 weeks so wasn’t expecting this now , I also ended up going to my local hospital but feel they wasn’t really bothered just feels like we’re left to deal with issues on our own , I really hope this settles soon . Hope your eye settled and yes I will repost once settled or if any other issues . Thanks 

  • FormerMember
    FormerMember in reply to FormerMember

    Yes taz that's how I felt was in and out in less than 10 minutes hope you are feeling better soon