5years since diagnosis 2.5years stage iv disease free.

Posted By
lak
2/28/2012 2:27pm
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lak
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Replies: 19

Hi,

I am in the UK, I was diagnosed with OM 5 years ago and became stage IV with liver metastasis in May 2009. I am 53 now and never thought I would see 2012. I have had a hard time  in the National Health Service getting a proactive approach to my disease. In the beginning it was very lonely. Things are changing and now most clinicians admit to patients that the disease can spread outside the eye.  I am now looked after by excellent doctors who are prepared to answer my questions and inform me about my disease. I have been extremely lucky , my small choroidal melanoma was close to the fovea but Proton beam has enabled me to have better than 6/6(20/20) vision. I have had avastin vitrectomy and cataract ops too. My liver was looked after by a top MRI specialist who found my metastases very early. These were treated first with liver resections x2 then ipilimumab recurrences 6 months later SIRT sorted all but 2 of 18 metastasis throughout the liver. Microwave ablation sorted the last 2. The latter treatment was the hardest and completed in Dec I am only just getting fit again. My 5k time is embarrassingly slow but then many UK 53 year old females can not do 5k at all! I have added swimming and cycling too to my fitness regime to try and rest my joints a bit. My latest scans are all clear of disease. I have plans to run a 10k and maybe a half marathon- but also a SCUBA trip to the Maldives. I have only had  surgery.ipilimumab and radiation for treatments no actual chemotherapy .I am writing this post because I think it is so important that we all unite and share information both between patients and doctors but also across the table.

I accessed treatments because I was informed. In 2007 if you had a poor diagnosis it generally was not thought wise for a patient like me to be informed. I was empowered to get myself informed by an American Charity (Lance Armstrong Foundation) and I owe them the time I have gained. I then met other patients through the internet and Sara and learned through others experiences and "Google" . Many US doctors have seen my scans at various times and advised me. Several times I have been on the verge of traveling to the US for treatment only to be able to access treatment in the UK. For some reason it is easier to find out "who does what" in the US than it is in the UK. I profusely thank all the US doctors who have responded to my emails over the last 5 years it gave me so much support and ideas.  I hope by supporting CureOm and sharing across the pond that situation will change.

Reading Tom's post brought back so many memories of that first year post diagnosis- I really don't think I slept more than 15 minutes at a time for a whole year. For people with a new diagnosis I really want to tell them that even if the worst happens its not all bad. For those of you who have developed metastatic disease like me - yes its not always easy. For those carers who have lost their loved one - I am so sorry- but I thank you so much for continuing to be here and fighting for a cure for us. To the doctors who treat us I m sorry we are sometimes angry and you guys get in the firing line, I m sorry we don't often do well - it must be a hard disease to watch as a clinician over a career.

To all of those involved patents, carers and doctors sharing information and experiences from around the world has contributed to my disease free status- I am sure if team working across specialties and doctor patient relationships can be built on across the globe then a cure will be found for this disease.

Carpe diem

Lesley

Hi Lesley,

I started reading your post without knowing who it was from, and halfway through I was thinking "this person should talk to Lesley!"  You are truly amazing, Lesley; of course for your disease-free status, but even more so for the gumption and take-chargedness you have manifested.  I am so happy for you.  Who cares what the numbers show in the marathons and all its iterations?  Just keep the NED numbers going on and on.

I'd like to share with everyone my current status.  First a refresher.  I became Stage IV in 2002 when two lesions were discovered in my liver.  For over 9 years now, I have been going through clinical trials, and procedures of all sorts: immuno-embolizations, Avastin & Nexavar, Sutent, CyberKnife, PD-1, etc.  My most recent treatment was Yervoy, and my most recent scans show that the many tumors are, on the whole, stable.  This has been my pattern for 9 years:  the treatments (most, but not all), usually halt or slow the growth of the cancer, until after a few months (once 2 1/2 years) they start on the march again.  I now have lesions in my liver ("numerous"), peritoneum ("numerous"), lungs, abdominal wall, chest wall, and perhaps other places as well.  I am in absolutely no pain, and I function pretty well for a very old lady (76).

Forums (fora, as in data???) like these have literally been my lifeline.  To be in touch with others who share your dilemmas, who have information, who have met doctors, who have gone through treatments, is a gold mine of information and emotional support.  I am grateful to everyone I have communicated with, to the many kind, honest and knowledgable doctors, and to people like Sara who are making real changes.

I encourage anyone with this disease, as well as those who care about them, to write/call others in the same boat.

Esther

Dear Lesley and Esther,

Thank you for sharing your stories... I have recently been reminded how isolating this disease can be... it is so important to reach out and talk with others and realize that there is so much hope in the field right now-- so many new advances and new possibilities... as many of you know, I recently lost my beloved husband, Gregg, after fighting this beast for 5+ years-- we fought metastatic disease, specifically, for 4 years and 3 months.  Those 4 years and 3 months were full of life-- we continued to work, traveled to 4 different continents and lived life as fully as possible, not allowing ourselves to be definied by the disease.  While my beloved Gregg is now cheering us on and helping us from the "otherside," I firmly believe there is still much to be hopeful about for the OM community-- progress is currently being made very fast and we can push it to move faster...

I am looking forward to our upcoming CURE OM Scientific Meeting in May (for physicians and researchers) because the interdiscipinary and discussion-focused nature will, undoubtably, bring about new ideas and ways forward.  We will bring that latest scientific information to patients when we hold our first patient meeting one month later-- in June in Philadelphia.  I think, at that time, it will be so important to connect with one another and hear the most recent updates from the scientific community.  Then, in July, we will announce the first recipient of the first MRF/CURE OM ocular melanoma specific research grant.

So, while my personal battle has shifted somewhat and I have to admit that I am missing Gregg terribly, I know there is much to be hopeful about in the OM community right now and I remain committed to CURE OM so that we can find a cure  so that no one else will have to endure what Gregg and I, and so many others, have had to face.  Together, we can make a difference in supporting each other and finding a CURE for ocular melanoma.  I know we can do this. 

Thank you, Lesley and Esther, for sharing your stories and for providing hope and for all your support.  We are only as strong as we come together as a community and fight together.

Thank you for supporting CURE OM.... please continue to share stories, ask questions, and support each other... that is the purpose of this forum... we want to support patients and their loved ones in all ways possible

Warm Regards to all,

Sara - CURE OM

Sara, Im not sure if I am doing this right or not. But I want you to know that you have my sincerest condolences for the loss of Gregg. It was Tim that finally told me and I wish I knew, Granted it was happening at I was undergoing my 3 and forth surgeries for complications, but I wish I have known so that I could have sent proper notice. I have reached a NEW and greatly needed research measure that could help no just is with OM, but has implications the world over. I need to talk to you about OUR NCSD event as well as the thing in May. I have the Sympopsium scheduled but need to have CureOM and The Cancer Fund working together and on the same page.

Please tell me if you get these little tid bit, cuz I havra feeling you wont!! ,-)

Hi David,

Lets try to talk this week... email me at sselig@melanoma.org and we can find a time to talk.  Also, I know Mary was trying to get in touch with you and so perhaps you can try to connect with her this week as well?

I hope you are doing ok and I look forward to connecting.

Best,

Sara - CURE OM

Dear Lesley, Esther and Sara,

   I have followed all of you, and appreciated all of the valuable information you  have provided.

   My story is a little bit different;  I was first diagnosed Nov., 2001 with a lump in my R-groin which was diagnosed as melanoma with unknown primary; total lymph node dissection. Got on trial of GM-CSF, Dec., 2001,(of which I did 3 yrs.) but still needed brain MRI and Dec. 29, 2001, they found a tumor in my L-eye which was melanoma and enucleation Jan., 2002.  I had my eye tumor compared to the groin tumor and all that was said is "histologically similar". My surgeon told me "it just says it's melanoma"??? So I'm not really sure if they are connected. Some of my doctors believe the eye is the primary,  others unsure.  I did have a lump in the calf of my R-leg in June, 2003, which they called an "intransit". Fast forward to May, 2009, when a lesion was seen near my liver (porta hepatis). Laprascopy showed lesions on my omentum. I did 2 mo. of avastin, abraxane, carboplatin, discontinued due to growth; 2 1/2 mo. of temodar and gleevec. Mar., 2010, surgery to remove lesions on liver, omentum, and numerous peritoneal mets. April, 2010 showed 3 new lesions in the liver and I did 4 mo. of a MEK inhibitor @ Univ. of CO with Dr. Lewis, but had to discontinue due to side effects in my remaining eye (impending central vein occlusion). I then did the compassionate use trial of Ipilimumab and finised that Dec. 2011. I have not had any treatments for the past year as I have been pretty much stable. I am a little frustrated though after my last scans. Radiologists in Nebraska say STABLE even though they've noted one more liver lesion and radiologists with Dr. Sato's team say some progression in peritoneal mets and stability in the liver thy're also noting 2 more than before)!! I just don't understand. My local oncologist visited with Dr. Lewis from Denver and his opinion was to wait and scan in 2 mo. as sometimes things "wax and wane". I'm scheduled for scans March 12th.

   I asked my local oncologist about doing sirs spheres, cyberknifing my largest lesion which is between spleen and stomach (4.0x3.2 cm) and then doing a re-induction of Ipi/Yervoy (I was approved for it before it became FDA approved). What are your thoughts on this? I'm also wondering about PD-1. I just heard that Merck will be allowing prior Ipi patients.

   Best wishes to all. Hugs to you, Sara. I've thought of you often.

I forgot to add, that I'm 68 yrs. old and my  husband and I just celebrated our 50th wedding anniversary, something I thought I'd never see. Can't believe it's been 10 yrs. since I started this journey.

Hi Nan,

Thank you for your good thoughts coming my way-- I really appreciate it.

I am wondering if you have had any genetic/molecular testing done on your tumor?  I am wondering this because if there is some confusion about what the primary tumor is, you might want to know if you have a BRAF mutation (seen in cutaneous and not ocular), c-kit (cutaneous, not ocular), or GNAQ or GNA11 (seen in ocular and not cutaneous)... if there is a chance that this is not an ocular primary then the treatment options open up slightly for you.... just a thought... as for the question of local control therapies vs. next systemic options... Gregg and I always tried to mix the local controls (i.e. cyberknife and sisrspheres) with the systemic options.  And, unfortunately, there is really no way to rank the systemic options you mention above one another because we just don't really know enought at this point... everything you mention is a very reasonable option.  Sometimes, after Ipi, it is important to wait a bit to see the response-- the responses typically aren't as fast as with the targeted agents.  As you know by now, often, the choice of next systemic treatment option is based on timing (i.e. what study has an open slot at the time), and what options won't rule out additional options down the road etc., etc.... 

Those are just some of my thoughts... I had forgotten that we had the Univ. of Colorado MEK inhibitor trial in common-- Gregg was in the trial for a few months as well, but then, unfortunately, progressed through it. 

I am hoping your next scans show good news... will be thinking of you.

Let us know,

Sara - CURE OM

Hi Sara,

I had molecular testing done at MD Anderson in 2009 when mets were first discovered in my liver and I'm negative in braf, c-kit, and nras. At this suggestion of Dr. Sato (I've been sending scans for second opinion) I just had tumor sent to Caris Life Sciences - Caris Target now and they also confirmed negative braf and c-kit. I was hoping for GNAQ and GNA information, but they do not do that testing yet. When I called, they said they'd be doing tests soon. I have asked for this testing for the last couple of years but no one seemed too interested. When I had to stop the MEK trial and I asked Dr. Lewis about it, he just kinda smiled and said the MEK was working and I took that as he assumed I had the mutation or it wouldn't have been working. I will be following up with Caris. 

I am going to sign up for the conference. I'll be looking forward to meeting you, Esther, Lesley and others in June.

Thank you for your kind wishes and I'll let you know how my scans turn out.

Warmly,

Nan in Nebraska

Hi Nan-- it sounds like you are getting all the "right" testing done... at this point, unfortunately, we don't necessarily have anything to target the GNAQ and GNA11 mutations (Gregg had the GNA11 mutation), but, hopefully, with some interdisciplinary cross talk between the ocular melanoma researchers and the g-protein specialists (these mutations represent a mutation in a g-protein), we will be able to change this and actually find treatments.... hopefully we will have something to say on this after our upcoming scientific meeting where some of this "cross-talking" will happen... stay tuned for more information in June...

Yes, please let us know how your scans turn out... will be thinking about you and sending all good wishes for a good outcome.

Warmly,

Sara - CURE OM

Nan,

 

Was your genetic testing done on tissue stored in parafin wax or fresh frozen tissue?

I looked into genetic testing of my tumour some years ago but they didnt offer much and it was very expensive and I had to choose between having the cash for testing or available for SIRT - I chose the latter.

I will check Caris life out on the internet if I cant find it I will get back to you. We can have Cbraf and done in the UK but I am most interested in GNAQ or GNA.

I have tissue in parafin from my first liver resection in 2009.

 

Lesley

I don't know if you need to pay for the whole CARIS testing just for GNAQ/GNA11 and I don't even know if they do it-- they do an entire panel (Gregg had it done at one point) so it might be worth looking into anyway, and, at the same time, I will do some searching to see other avenues to get the GNAQ/GNA11 testing done....

I will get back to you...

Sara - CURE OM

Hi Lesley,

My tumor was tested on omentum tissue stored in parafin from 2010.

At the moment, Caris does not test for GNAQ or GNA11. I spoke with an individual from Caris last week and they said they would be doing that testing soon. I will be following up. Hopefully, Sara will have other options.

I have a question - when Caris is able to test for GNAQ and GNA11 ,do you feel it would be best to have tumor tissue from my liver as opposed to omentum tumor, which they said they have enough of to test? My feeling is liver tissue, given I have ocular and also have had a cutaneous melanoma. My docs feel, over 90 percent, that my metastatic diseases is ocular.

 

Nan

Hi Nan,

 

Thanks for all the thoughts and thanks to Sara for looking into GNAQ GNA11 testing.

 

What I was thinking about your situation Nan now this news re radaition post ipi helping in one of Wolchoks cases to direct ipi have you had ipilimumab yet?

 

Sorry if I have overlooked it, but I had SIRT to liver 18+ 4-9mm size mets so added together i thought at the time a signinficant tumour burden but it was 12 weeks after my last dose of ipi. So far i have not developed disease outside of liver and have had no growth, since Feb 11 and those tumours have gone following SIRT and no new tumours . I went stage IV in May 09 and have had new metastases in liver always within a year and the interval getting shorter. So this last year shows a distinct change in my disease patern- ipi + radiation?

 

Maybe we should start a new post as anyone looking for ipi and radiation would not see this post.

 

carpe diem

 

Lesley

Hi Lesley,

I am also in the UK. I was very interested to read your story - thank you for sharing it as I found it very helpful.

I was diagnosed with OM in April, treated with proton beam therapy. Biopsy shows high probability of metastasis. I need to find a top MRI specialist - may I ask who looked after you?

Thanks

Jane

Hi I have not found the way of making you a friend .

 

go to eyecancerforum.co.uk and make me a friend then I can reply to you  more easily.

 

I take it if you were treated with proton beam you most likely were diagnosed in Liverpool or Sheffield London does not do as much proton beam.

 

If you know your risk then I would guess Liverpool.

 

Dr Marshal is the oncologist in Liverpool that people are generally referred to . He is very nice but could not help me. Privately I had Dr Ashley Guthrie do MRI s  for me . If i could see how to make you a friend on this web site I could tell you more by email

 

Have you contacted Ocumel uk Kathryn the manager is also very good and tends to know what is going on where.

 

But make me a friend on the eyecanceruk forum then we can exchange email addresses which would be easier.

 

Carpe diem

 

Lesley

Hi Lesley

Thanks - that's great!

Will get on to the eyecanceruk site and do that.

Kind Regards

Dear Lesley

My brother has been diagnosed with stage 4 melanoma which has spread to his liver and they believe it started in his anus.  He is a 50 year old man and has five children, we are devastated.  He has always been a very fit man and competed in many Iron Man competitions, the last one only being in August 2011 and now here we are with this awful news and it feels like our lives have been shattered.  We had our first oncology appointment today and were told that there is no cure, they may be able to shrink the tumors on his liver, we don't know too much else but the consultant wasn't very helpful, he made us feel like he was an undertaker and kept shaking our hands and saying sorry.

He is being referred to a melanoma specialist Doctor in Cambridge where he said he could try a clinical trial. He is being tested for the BRAF gene but I am not sure whether there are many options if this is negative.  We have done lots of research on line, the prognosis looks grim and the clinical trials and new drugs are blowing our minds with information.  We have been told that surgery is not possible.  His lungs are clear, they are going to check his brain by doing a MRI scan.

Would you be able to offer me any information that helped you or different treatments etc.  I would so love to hear from you, my brother means the world to me and I can not imagine him not around.

 

Tracey

Dear Tracy,

 

I can will give you any help I can. I cannot seem to find a way of emailing you directly or messaging you so you could contact me via email if you go to http://www.eyecancerforum.co.uk

and register as tracey and make yourself my friend then I can reply privatley and give you my email address. I must stress that anal melanoma is different to eye melanoma cant remember the exact gene defect in anal but think I can find a link to a web talk on it.

 

Lesley

 

July 2012 stage IV since 2009 disease free now!

Well done, Lesley! You're a great inspirational example how we should take our lives fully into our own hands.

 

Peter L in NH