Choroidal melanoma with liver mets

FormerMember
FormerMember

Hi all,

I'm new to the group and I'm looking for some support (not sure what type yet!). This is my story.....

I was diagnosed with a choroidal melanoma in January 2010 and had my right eye removed 3 weeks later (the tumour was too big and it was too late for other forms of treatment). I recovered reasonably well, went back to work etc. but in June last year I was told I had 2 lesions in my liver that weren't there on previous MRI scans. After a second opinion and numerous other tests and appointments I was told the lesions were very likely to be metastasis and had a liver resection on the 30th of December.

I'm 36 years old and the outlook for metastatic choroidal melanoma is not great, I was wondering whether anyone else in the group is going through something similar and can share their experience.

I thought about counselling when I was first diagnosed with cancer but never really did anything about it, I'm now thinking it might help me but not sure how to go about it. Has anyone tried it?

Also, I was wondering if people who have gone through a liver resection have been able to go back to "normal" (or as close to normal as possible).

Anyway, thanks for reading my story and looking forward to reading your experiences!

dragonfly

  • Hi Sorry to hear that your cancer had spread to your liver. My husband had his eye removed in 2011 in Liverpool due to a large tumour, one of the largest professor damato had said he had seen also. Fortunately my husband has remained well so far, but I just wondered if you were offered the genetic testing of your tumour when they initially operated to see the likelihood of it returning? Emma
  • FormerMember
    FormerMember in reply to FormerMember

    Dragon fly,

    It seems you are doing a lot of research.  Eye cancer pateints have already done this research.  Have you been in contact with OcuMeluk or the eye cancer forum- you will find people who at some stage in the last couple of years have researched all of what to do next before.

    Who is your oncologist.

    You talk as the only option for you is trials and that ipilimumab is dangerous. Yes it is, however it is a licensed drug and some people started taking it as a research drug about 11 years ago. So some of its longer term effects are known. ( If I was to get ten years i would not complain- most dont only about 5%) . As an incurable cancer we are great for phase 1 trials. The problem is these are not aimed at treating people but working out the physiology pharmo kinetics of the drug and working out the human dose and side effects.  There are phase 1 trials that have harmed and have stopped early. The dose you may recieve may be a mouses dose! It is all unknown and not aimed at treating very few patients benefit from phase 1 trials but all of us pateints are eternally greatful to them.

    Once a drug looks promising from a phase 1 it goes to phase 2 where it is to be tested for clinical benefit.  As we are a rare cancer with a dreadful history of being resistant to theuropeutic agents we are excluded from nearly all phase 2 trials. Ususally in the uk every 5 years or so a new phase 2 opens the last one was Sutent v dacarbazine however by the time it was running  it was clear from the use of Sutent in stage IV pateints in USA with OM that it would not be effective. I believe the trail showed no benefit over dacarbazine.

    So what I am saying in basic language is it is all rubbish really but the best and the safest rubbish is probably ipilimumab as it is known licensed tested drug. I find it hard to justify putting pateints in a phase 1 or phase 2 trial until they have had ipilimumab about 20-30% get a response 8%that is llong lastting. Some people dispute it works in Om but I think that is because by the time an OM pateint makes it to a dr who is prepared to try they have heavy disease burdens.

    MEK inhibitors are the hyped up drug at the moment - they only block part of the growth pathway and only some of the cells in peoples tumours have the appropriate defect. So what it does on its own is promotes (through Darwins law of evolution) selective breeding of cells not reliant on that genetic defect so one sees early response or disease stability followed by a rapid decline as the new cell line takes over. I beleive a MEK v Dacarbazine trial will take place in the UK soon. There may be an MEK + AKT inhibitior it is avialable in Germany that would be more interesting but I have no idea whether it would work.

    If I grow a tumour large enough to enter a trail the anti pd1 + another agent would be intereseting or IL15 or TILS at Bethesda they cover the costs for over seas patients there.

    What I am trying to say is Ipi is the logical step and your oncologist favoring the unknown over the known shows lack of experenice or maybe he is of the old school who starts trying to treat us when our livers are at our pelvis'. Who is your oncologist? I have sent a friend request to you .

    You have obviously done a lot of reading - I find it helpful explaining my understanding of what i have read. If you made me a freind we could exchnange private emails. Have you already posted on eyecancer forum?

    At the end of March I am speaking in Belgium about the difficulties facing the rarer cancers in accessing any clinical trial.

    Lak

  • FormerMember
    FormerMember in reply to emma_lee77

    Hi Emma,

    they did genetic testing but I have only just found out the results on being referred to an oncologist 3 and half years after the original diagnosis!!! The genetic testing showed it was high risk melanoma.

    I had MRI scans of my liver every 3 months for the first 3 years though, so I don't think the team in Sheffield could have done anything else for me in terms of surveillance... I've heard most places do 6 monthly scans so I'm not complaining about the follow up but maybe an earlier referral to an oncologist would have been appropriate

    Anyway, nothing I can do about it now but fight for treatment.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Lak,

    My oncologist is Neil Steven at the Queen Elizabeth Hospital in Birmingham.

    I have accepted your friend request and I will check the eye cancer forum properly as I know there is lots of info there and probably answers to a lot of my questions are  there too

    Is this talk you are doing at the end of march going to be available for us to see?

    Thanks!

  •  Hi everyone.

    I am writing from Poland. 


    2017 - diagnosis of eye melanoma. Protonotherapy treatment.

    12/2020 diagnosis liver metastasis, surgery, unfortunately, everything could not be removed. After month - MRI and diagnosis: D37 tumors of uncertain or unknown nature of digestive organs, liver, gallbladder, bile ducts.

    I do not qualify for expert treatment - immunotherapy, because I don't have the needed antigen. 
    I got an infusion of vitamin C. Dependence: repeat every month.

    Are there any other methods I can try? Where where can I look for help?
    thank you very much and I keep my fingers crossed for all
  • So sorry to hear what you’ve been through.

    My husband had his eye removed in August 2019 - OM.   He had scans every 3 months, in october 2020 he was told he had several lesions on his liver - Metastasis.  Too much cancer to operate or to resection.  He’s been receiving immunotherapy, Ipilimumab & Nivolumbab. He had a scan 2weeks ago to see how the cancer was reacting, NOTHING! The tumour has grown & he said there’s nothing more we can do for you!  They did say he’ll have a scan on his spine to rule out a spinal tumour due to the numbness in his legs & feet, he can’t walk properly!  He’s been really poorly after the 4th treatment, he was shaking & had flu like symptoms, that part has now passed.  Apparently there’s a new treatment & has proven to shrink or completely eradicate the tumour, it’s German made & not available on the NHS.  I spoke to a lady on the Ocumel website, her daughter is currently receiving this treatment..DULCATH.  Oh & it only costs £240,000.  So it’s a waiting game again!

    I hope you get your treatment dragonfly.