Lung cancer mets to eye : Hi I was... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Lung cancer mets to eye

18 Replies

Hi I was diagnosed with Stage 4 NSCLC two and half years ago non smoker Had chemo Then Pemexetred maintenance for 10 months Then Palbociclib for 5 months This was great at first but then stopped working

I've had 8 sessions of immunotherapy I began having problems with my right eye about 5 months ago Had a brain scan which was clear and was diagnosed with unrelated glaucoma Things suddenly got worse and I developed numbness around the eye area and into my scalp My eye us closed most if the time Some pain but not much

Told today I need radiation therapy to eye area as it is mets not glaucoma

I would appreciate it if any of you would share your experiences of this please

Many thanks

18 Replies
rottenrunner profile image
rottenrunner

hi Addy26

sorry to hear about this and that your having problems with your eye, I'm sorry I can't be any help for that, when I was diagnosed with the same as you NSCLC stage 4 I went vegan and believed 100 % I'd beat it, 5 months later my cancer is dormant and I just have 3 monthly checks to keep an eye on it, sorry I couldn't be more help to your condition but keep believing and never give up good luck and wishing you all the best

Dave 😊👍

RoyCastleHelpline profile image
RoyCastleHelplinePartner

Hi addy26.

The incidence of ocular metastasis from lung cancer is reported to be 0.1–7%. I have attached a link to a case report from the medical literature for your information. Whilst it refers to someone who had surgery and chemotherapy it is nevertheless an interesting case. bmccancer.biomedcentral.com...

Kind regards,

All the team at the Roy Castle Foundation.

Bow-19 profile image
Bow-19

Hi Addy26, my lung cancer diagnosis started with a tumour behind my eye. A biopsy was taken from my eye which showed the primary in my lung. That was nearly 6 years ago. I had external beam radiotherapy to my right eye. Since then I had been seen at an Occular Oncology Centre to try and maintain some vision in my eye. At the moment I have avastin injections roughly every 7 weeks. My vision isn’t good in that eye but it’s still there! How are you getting on? Wishing you all the best x

in reply to Bow-19

Hi Bow 19

Thank you so much for getting on touch

I'm having the last of my 5 radiotherapy sessions to my eye later today Think my head and face feel less numb but early days Finding the numbness harder to deal with than the sight loss . What has happened to the tumour in your lung?

Best wishes Addy

Bow-19 profile image
Bow-19 in reply to

I was tested for mutations and found to have the ALK mutation. My bones and liver were also affected. I have been on general chemotherapy then maintenance and since then different TKIs crizotinib and Brigatinib. Brigatinib is keeping everything stable at the moment. Long may it continue. I remember the numb feeling below my eye too. Hope today goes well. I am a non smoker too, we’re you tested for mutations? X

in reply to Bow-19

Hi My numbness has spread to almost half my head Very strange sensation!

I was tested for mutations but unfortunately didn't have them Just PDL1 5 % Have had 6 infusions of Pembrolizamab but not sure how that is working Certainly not the way I hoped it would So pleased for you things are going well Never been a big meat eater now trying Vegan diet Six years Great

Bow-19 profile image
Bow-19

I have never been a big meat eater either mainly fish and chicken. Hope the radiotherapy does it’s job. Have you mentioned the numbness to your Consultant? My numbness in my face and ear did go after the radiotherapy but I can’t remember how long it took. Everyone is different too. Definitely worth monitoring how you are and letting your medical team know if you have any concerns. Best wishes x

Spananf profile image
Spananf

Hi, My husband was diagnosed with nsclc last November with mets to the other lung and liver. During a routine eye test in July a tumour was found behind his eye. Since July he has had 3 infusions of carboplatin/pemetrexed and pembolizumab. He went to the eye clinic last week and was told that the eye tumour hasn’t changed and he has now been referred to Morefields eye clinic in London. He was told he would probably have radiotherapy to the eye. We have no idea how this is done or what to expect so if anyone can enlighten us I would be very grateful. He has no symptoms from it and still wouldn’t know if it was there had it not been for specsavers.

I hope that your treatment has worked for you.

in reply to Spananf

Hi Spananf

I have completed 5 sessions of radio therapy to my eye A session each day over 5 days On the first visit a mask was made to help to map where to deliver treatment and to keep my head in same position I am rather claustrophic so wasn't too keen on this but I have to say it was fine They heat a plastic mesh and place it over your face Its full of small holes with a nice big hole over your nose When cool it hardened . Some measurements were taken too. The mask was put in place for each of the 5 sessions and clipped into place Each session once everythi g in place only took about 5 minutes.

My eye symptoms started in April and were misdiagnosed as glaucoma It took a particular eye scan to find the met. I had increasing numbness that by the time if the radiotherapy was almost half my head Very gradually the area if numbness has decreased but still quite a large area I've been told it will be up to 8 weeks before the radiotherapy will have done it's job No improvement to sight yet.

Hope it goes well for you but be reassured the actual sessions are not too bad at all Went out for a meal after one of them! The staff at Brighton hospital were great Please let me know how you get on

Very best wishes

Addy

Spananf profile image
Spananf in reply to

Thank you so much for your reply. Did you have to travel far to get to the hospital? He has to go to London about 70 miles away so I’m a bit concerned about how that will work if he has to go every day!

You said that your treatment had stopped working for you, how are you doing and what are they doing for you? My husband seems to be taking this all in his stride but I can worry for England!

I will let you know the outcome of the appointment on Tuesday

Best wishes, Anthea

in reply to Spananf

Hi Spananf

We are only 15 miles from Brighton so that wasn't really a problem for us I can see going to London everyday may be difficult I'm sure they will work out times and dates yo make it manageable for you Your husband may need a different schedule anyway

At the moment I am having Pembrolizamab every 3 weeks had 8 or 9 now and my chest is stable Hoping for shrinkage but happy with stable!

Please do let me know how you get on on Tuesday

Best wishes

Addy 26

in reply to Spananf

Hi Just wondering how you are getting on

I've had pneumonia and blood Clot on lung so been in hospital for several days Came out of the blue but knocked me sideways!

Spananf profile image
Spananf in reply to

Hi, sorry to hear about your hospital stay, hope you are through the worst of it now.

We went to Moorfields last week and were told that he would be referred to St Bartholemews who would decide on what treatment, when and where he would have to go for it. We have heard nothing yet so might give it until next week then make a phone call. We’ve also had the date for his next scan, 31st October so scanxiety is on its way!

I do hope that they’ve managed to sort you out. I’ll keep you updated. Thank you for asking x

Spananf profile image
Spananf

Hi Addy, just wondering how you are after your spell in hospital. I hope you are doing much better now.

in reply to Spananf

Hi Sorry not to reply sooner but had another short spell in hospital on intravenous antibiotics etc

As for the met to the eye the area of numbness has reduced further a strip the width of my eye brow going from forehead to crown whereas it was pretty much half my head before which is good but still cannot use eye as vision very distorted My oncologist says it's still 'cooking ' as takes up to 8 weeks

Best wishes to you both

Spananf profile image
Spananf in reply to

Good to hear from you. Sorry you’ve been back in hospital but hope you’re better now.

We are no further forward with my husbands eye mets. Went to moorfields hospital who the sent him to st barts who are referring him back to our local hospital. It’s been a nightmare. His oncologist phoned him yesterday to apologise for all the messing about and says he wants to wait for the result of his scan next week and take it from there. Other than that he’s not doing too badly.

Best wishes

Spananf profile image
Spananf

We had bad news yesterday that his treatment isn’t working so they are stopping it. He now has to have a brain scan. If it hasn’t spread there they will do radiotherapy to his eye and give him a different chemotherapy. Chances of this working are slim as he’s already had the best treatment apparently. Hope results and outcomes are better for you and that you are over your recent hospital stays x

in reply to Spananf

I am so sorry to hear this Have you looked onto possibility of going on a trial? I went up Sputhampton for 2 different trials Also sometimes the best treatment for one person may not be the best for everyone Many people believe a plant based diet helps I watched the programme Bill Turnbull made He looks at some alternative treatments Mostly focussed on Prostate cancer but could be useful

I'm having a chest and brain scan next week so still hopeful

My very best wishes to you both xx

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