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

  • FormerMember
    FormerMember
    Hi, sorry to hear what you have been through. I know several people in your position. I have OM but no mets so far. Although I had a false alarm and have had a liver resection by lapriscope in Southampton general hospital. Please go to www.ocumeluk.org and become a free member. We are a charity supporting people with ocular melanoma and can put you in touch with people with and without liver mets to chat to. You can contact me direct hampshire@ocumeluk.org We also have a facebook page. Hope you chat with you soon. Cx
  • FormerMember
    FormerMember

    HI  i m 4.5  years since my first liver resection in 2010- I m just back from skiing in Colorado where I was learning to jump of snow cornices

    I have survived because I have pushed my doctors to be pro active it is not always easy.

    You can find me at www.eyecancerforum.co.uk "mark"

    You have not said where you are treated but think of ipilimumab pos liver resection. If you want to talk befriend me on the eyecancerforum.

    I am a bit concerned as it took 6 months for your cancer to be treated- I have made a rule to aim for treatment within 4 weeks and accept 6 weeks. That is very hard to achieve though....

  • Hi, I would just like to "second" everything Lak said and don't rest until you have had answers. It is sad but unless you fight for yourself...no one else will. The eyecancerforum is very good, I am on there too. Good luck Annette x

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember

    Hi,

    Sorry to hear of your diagnosis. It has made me think that really I have never been told exactly what type of Eye Cancer I have had as a 40 something. Only that the words Cancer and eye lid have been used. I am similar in that I have had an eye removed about 2.5 years ago along with a siliva gland. Before the big op I was told it was a time bomb that could lead to other Cancers. I had several different scans including MRI and CT, but there has not been any mention of any liver cancer. So far, so good as have had and still ongoing check-ups.

    I had one session of counseling in one hospital upon diagnosis. The person doing it was ok, but was disorganised in that they did not have keys to get to their own office to get information. Not did they know w much about what hospitals provided prosthesis. So I'd say counselling depends on how good the counsellor is.. Although it may be a good idea to take it if offered to just use as alternative sounding board to close relatives and friends.Macmillan nurses in my local hospital have been very supportive though and offered a lot of help

    Not been through a resection and hope I don't have to. But it seems not an easy ride having an eye removed.and explaining to people what you can and can't see.

    Hope all goes well with the liver resection.

    Neil

  • FormerMember
    FormerMember in reply to FormerMember

    thanks for your reply, I am aware of ocumel, I will check the website and become a member

    I will check the facebook page too

    Thanks again! 

  • FormerMember
    FormerMember in reply to FormerMember

    hi and thanks for your reply

    I was originally diagnosed and treated in Sheffield but I was really unhappy with the liver surgeon I was referred to at the royal hallamshire and I asked for a second opinion in Birmingham as they have one of the biggest liver centres in Europe.

    The reason it took so long is because I had to wait 2 months to see the oncologist and liver surgeons in Birmingham and then they weren't convinced that what the scan was showing was metastasis so they repeated all tests again! In the end they offered to do the resection in November but I chose to delay the operation until after Christmas because in 4 months there was hardly any growth and no new lesions appeared. I had a very long discussion in clinic with both the oncologist and the liver surgeon and decided that since those cells had been there all these years I could wait another month. It was very much up to me to decide what I wanted to do...

    Even if hadn't asked for a second opinion I wouldn't have had surgery any sooner than November/December as the surgeon in Sheffield refused to do anything about it, he decided that "wait and watch" for 4-5 months was the best thing to do. Basically, in his opinion, I was going to develop more mets and there was no point in a resection if more were going to appear eventually (lovely man he was!)

    we discussed Ipilimubab with the oncologist but at this moment in time I have an excellent quality of life and I'm very reluctant to try it. The oncologist is very much against it at this point and he wouldn't advice I have it.

    I was wondering whether anyone here has had Ipilimumab and what their experience is with it!

    I will check the eye cancer forum

  • FormerMember
    FormerMember in reply to FormerMember

    Birmingham is a bigger liver unit than Sheffield but they have no special interest in Ocular melanoma. Likewise your oncologist can not be actively involoved in treating OM or immune therapies. They are only affective with very low tumour burdens in Om. So the earlier or after liver resection seems better. Ipilimumab is very well tolerated by most patients however I did suffer quite major side effect when I took it in 2010 and again in 2013 however it gave me 3 mths when I felt pretty awful and then 2 years 3months compelety normal life and now so far 4 months awful and now disease stabilty and normal life for 7 months so far(not including the time I was ill with treatment.)  Did the liver surgeon in Birmingham fresh freeze samples of your liver mets? This could be advantageous to you. Have they talked to you and tested you for vaccine treatment you would have to be HLA 2..

    Southampton is doing the most for OM at the moment Liverpool second although there waiting times for surgery seem to be longer.

    Interventionists are really good with OM in Southampton and Liverpool Leeds is an exellent centre for gamma knife for brain metastases that tend to occur given time.. There is nothing special other than the attitude of the doctors to OM. OM pateints do best with aggressive treatments  But unless we try to get treated in the same places we will not let the doctors gain expereince

    Who was the liver surgeon who carved his initials in the liver in Birmingham?- he must have been disliked by his colleagues to have bee reported as they are the only ones who would know.

    You have done very well to battle through to get treated- you must feel as if you have been through nightmare. I only add these points so if anyone looks in the future they may approach Southampton who seem to treat the liver within 4-6 weeks at the latest. Just so they will not have to fight or be prepared to pay like you and me.

    I really hope you are as lucky as me. Having had 2 open resections I know you will still be feeling very sleepy. I used to cat nap a lot after my resections . But when I was awake I tried to be very active. I made my self do a short walk twice a day- each week lengthening it. It helped both physically and mentally. I ate loads of fresh fruit and veg and forbade anyone to bring me get well presents of chocoloate! I found i was able to start swiming and running at 6 weeks and was SCUBA and skiing by 8!

    Good luck and well done for standing up to those who think we are better off dead .

  • FormerMember
    FormerMember in reply to FormerMember

    I found your reply really interesting....

    I'm going back to see the oncologist in 3 weeks time and I would like to discuss all these things with him. He does have an especial interest in OM  by the way, unfortunately not the experience that other centres have so not massively helpful for me!

    I was wondering where is the evidence that says that immune therapies in OM are only effective in patients with low tumour burden? If there is anything I can take with me to the appointment I will be in a better position to push for treatment as I know most of his experience relates to treatment of skin melanoma.

    Also, I'm not familiar with the vaccine treatment but I'll look into it and ask.

    I'm due to see the surgeons next week and hopefully I will find out about samples etc.

    I am 6 weeks post surgery now and although I'm no feeling too bad and I'm going for walks every day I'm still a very long way off doing all the exercise I used to do pre-op. I can't believe you were scuba diving 8 weeks after the resection, that's the one thing I'm most looking forward too but I recon I will need lots of help with the equipment as I can't lift anything heavy just yet, how did you manage? I was going to ask the surgeon next week if I can start swimming, I'm pleased to know it can be done!

    Anyway, thanks for all the useful info and the encouragement!

  • FormerMember
    FormerMember in reply to FormerMember

    http://cancerimmunolres.aacrjournals.org/content/2/2/127.abstract

    That is a link to an abstract from  Hodi - leading oncologist in immunetherapy saying that response to ipilimumab is linked to low levels of VEGF. VEGF is vasular endothelial growth factor. This stimulates cells to make new blood vessels . Melanoma metastases need this protein to grow the blood vesesls that they require to grow. Uveal melanoma cells have been demonstrated to release VEGF into the tumour micorenviroment and as tumour burden increases into the cirulatory system. Not direct proof or we would have all the answers but logical to deduce that if in high tumour uveal melanoma metastatic states there is high levels of VEGF in circulatory system than there exists more hope of response in low tumour burdens when VEGF levels are lower.

    My oncologist is Professor Ottensmeier. I also saw Prof Dalgleish but he had nothing to offfer me but very postive., I also saw Dr Marshal,Prof Patel but they could do nothing.

    Dr Danson and Dr Marples wanted just to give me dacarbazine

    Professor Middleton would not see me as he said he had nothing to offer.

    Professor Lorigan at Christies told me repeatedly over the years that he does not do ocular melanoma

    Professor Hawkins is wonderful and if i ever have metastases suitlable for TILS and £75000 I would go there(skin melanoma get it on the nhs we have to go private.)

    I have not seen Dr Nathan as a pateint but he seems very pro active in treating melanoma and does not shut the door on ocular.

    Dr James Larkin often answers my questions but as yet he has had no treatments to offer me.

    So you see I have been to the majority of large oncology units from Leeds to the South coast. Any who were not prepared to take a risk were ruled out as there is no proven therapy so if one wants to use only evidnece based medicine it would mean just sit back and watch tumours grow.  Dacarbazine has been used in melanoma for about 40 years. There is a low response in skin melanoma but  a response of less than 1% in ocular melanoma which to me means no evidence and if they have no evidence after 30 years use thats a poor show. Although I beleive it may help reduce symptoms in the paliative setting.

  • FormerMember
    FormerMember in reply to FormerMember

    wow, thanks for that, it looks like there is not much point me going around looking for another oncologist, you have done some serious work there!

    I had already ruled out Dacarbazine but I didn't really know how to go about getting Ipilimumab after the conversation I had with my oncologist. Also, as I mentioned earlier on, I have an excellent quality of life at the moment and I was worried treatment with Ipilimumab would change that

    I completely agree with you, there is no evidence at all for treating metastatic OM and so our only option if we want evidence based treatments is sit back and do nothing, I was thinking more along the lines of these drugs being used in a clinical trial setting which is what eventually will provide the evidence we need. Treating isolated patients in some centres will never answer all these questions but I guess for us now is our only hope of being treated with something as opposed to doing nothing!

    Thanks for taking the time to reply to my post and for sharing all this info, I really appreciate it