Anyone had proton beam for iris melanoma

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Hi all ,

I have just been diagnosed with Iris melanoma , I wasn’t given much information apart from I will go to clatterbridge for

proton beam therapy over 5 days and that’s it , follow up

for 2  years at Liverpool .

I wasn’t told a stage , a prognosis , if I will be monitored for matastais , what the success rate is and are there any symptoms from this treatment .

I feel pretty alone and have lots of questions , I have a lot of other illnesses and was due a diagnostic hysterectomy next month but I feel

this will be cancelled again .

I would appreciate anyone who could share their experiences with me .

tjank you in advance 

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I don't have the experience you're looking for but noticed that your post hadn't had any replies yet. I've searched the group and found these previous posts for you to have a look through. You could have a read through some of the more recent ones and contact some of the posters if you think they can help you further.

    I'm 'tagging' into my reply as they are the most recent poster who has mentioned having proton beam. Hopefully they will be able to pop on and share their experience with you.

    When you feel up to it, it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Thank you for your kind welcome and I will be sure to update on here as soon as I get to ask some questions , which is fortunately only a week away .

    my treatment starts on 5th September 

  • I had proton last year for a chloraldle melanoma 

    I wasn't given a stage and only got a prognosis as i went for the voluntary biopsy (nothing to it).

    You can ask about the biopsy when you go to Clatterbridge.

    there were no side effects from the proton beam -mine was in winter time but i would   think that having it in the summer it would be a good idea to have sun glasses with you as your eye can be quite sensitive after wards.

    Being the Iris it might not be near the optic nerve so you reye sigh tshoild not be affected.

    Monitoring for your liver should take place locally to you - different areas seem to do it differently - some offer ultrasound only other people seem to get MRI as well.

    Again if you are near to Liverpool for you r eye follow-up this is good as they have the ocular oncolgy experts..

    On a more practical note if you are being put up in the village hotel there is an Aldi almost next door wher ewe picked up something for lunch every day, if you need taxis other than the prearranged ones to & from the hospital Argyle satellite are a good reliable firm ( others aren't ) 

    Feel free to ask any other questions

  • Hi chocolate girl 

    I hope your well and thank you for sharing your experience with me , it really does help .

    my mum is coming to stay with me at the Village hotel , I am disabled so I can’t walk far but I have wrote down a lot of eating places close by , I do drive so this is a bonus .

    The  hospital have advised they will send a taxi for treatment .

    I am under St Paul’s at Liverpool , which is about 60 miles from me , but some people travel much further . 
    I have just been to order some upto date prescription sunglasses as I’m already finding it’s to bright outside and that’s before the treatment , so that’s one thing off my list Joy.

    I go for my consent meeting and trial run next week , I am fortunate that is it not near my optical nerve .

    have you been told statistics based on your biopsies ? I was really concerned about having this but I feel I’d rather know what I’m dealing with , I like to be informed rather than not know.

    Ive also been having issues with my liver for a while that I am currently waiting to be investigated for , so I feel once I’ve had some sort of scan it will put my mind at rest . 
    I hope your doing well 

    Ally x

  • good afternoon

    It's good that you are near Liverpool so all your treatment and aftercare are coordinated. I'm from NI and there are no ocular oncologists here so so far aftercare has not been great  - i ask a question and they look strangely at me - one consultant asked "is it meant to be shrinking" - i think if things are no better at my next meeting i will ring Liverpool and see what they say.

    I was there during lock down so a lot of time in the hotel bedroom - we had to use just eat to order food in so apart from going for treatment  and the daily walk to Aldi we never left the hotel so really a very relaxing time.

    They were also very good about allowing a late check out on the Friday 7.30 pm rather than 11am as the ferry didn't sail until 10pm

    All the doctor said about the biopsy was that it was very positive. the biopsy its self is no different to have the numbing injection at the dentist and a nurse holds your hand the whole time. you will have two sets of eye drops after the biopsy -added to the set to be used because of the PBT.  each set needs done every 4 hours i think  and you have to wait a while before doing the next ones so you seem to spend a lot of time dropping your eyes. 

    Hope next week goes well for you -they will be making your mask which you can keep afterwards.

  • Hey, i've gone through the same. Last year my local hospital rang me before Christmas to tell me i had cancer but the consultants in Sheffield were less concrete, i've now been told basically they have no idea when it will be cancer but it will be one day and why wait until it's an aggressive cancer before i get treatment? 

    I have asked loads about this beam and have been told it's like a 95% effective rate so that's always a positive! i'm so sorry you have other illnesses that can't make it any better 

    I'm currently just so confused and i don't know how i deal with it because they don't know whether it's cancer now, in 1 year or in 20 years! it's so confusing! they're not able to do any biopsy's either 

    How are you getting on with everything? Have you got your treatment booked yet? 

    Thanks  

  • i assume you are half way through your treatment now. Hope it is going OK for you.

  • Hi Chocolate

    sorry for the late reply , I’ve had just about everything go wrong this week Face palm

    tye oncologist said I would probably get cataract at or glaucoma but as it’s the iris it has over 90% success rate and apparently I won’t be followed up for mets , which I found odd.

    liveriol hadn’t sent clatterbridge a picture of my tumour but a picture of the 2 chorodial moles at the back of the eye , which Liverpool said they needed to monitor , however this was not mentioned in my report .

    I rang 2 weeks ago and this had been reported by the consultant who diagnosed the tumour , without the other consultant adding his bit .

    I was told a new report would be sent but haven’t had anything yet .

    I did ask the oncologist what the pigmented dusting in the angle meant as this was on my report but he could t say what it meant .

    I came away still feeling like I did t know what was going on ,  

    have you had any fatigue from the treatment or any issues with your vision ? A break sounds like a good plan , lazing round all day is something I never do and that’s good of the hotel letting you check out late .

  • Sorry for late reply but i have been on leave from work and so did not have access to a PC.

    my melanoma was close to the optic nerve so my vision has been deteriotating but i was warned about this.

    expect to have a local check up before the end of the month but they never tel much - basiclly i think it is so rare they do not know what to say.

    My own eye is weird at he minute and I think I will actually post here about it.

    my eyelid has been been very tender for most of the last week and the last few mornings i have needed to bath it as it has been partially closed .

    My mum looked at it this morning and says it looks like a stye on the eyelid.

    The weird thing is that my general vision in that eye is better than it has been