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#6624 Hi, New To This And Very Confused

Posted by marc on 03 March 2015 - 07:50 AM

Dear James,


Southampton would be the better choice, According to the NICE guidelines ocular metastatic melanoma should be treated by a specialist with an interest in that disease. Professor Lorigan the professor in charge of the melanoma treatments in Christies has repeatedly told me that "he does not do ocular melanoma". The requitrements are a team that has a specific MDT that meets to specifically discuss OM this happens in Southampton and lIVERPOOL. Southampton has done this for many years Liverpool was talking of setting up a virtual MDT when i last spoke with them 2 years ago. There are some excellent doctors in Liverpool and Southampton and Christies, but it is having people focussed that is important. Lorrigan has also told OcuMel UK that repeatedly too. There are probably less than 300 metastatic cases in UK each year so really if you want to see someone who knows something you have to go to a specific tean dedicated. Like a general vet can treat a horse but if its a race horse with a tendon you go to an equine specialist. The outcome may or may not be altered but you will be offered more chances by the equine specialist. The interpretation of scans and prognosis will be better from a Vet that is more used to dealing with horeses. Although your 35 year old pony will be adequately treated by a general vet - horses for courses. However your mother in her early 60s is realtively young and should be considered high value. unless there are a lot of co morbidities making aggressive treatment unsustainable.


I was a Gp I got liver mets in 2009. I have had the treatment that was available. There is no proven effective treatment but targetted liver therapy and immune stimulating drugs have helped me live a more or less normal life for the last 5+ years. I was 50 when the mets were diaganosed.


I disagree with Micahel I do not think chemo embolisation will be of any benefit for such small widespread disease. I had Sirtex (internal radiaiont with Ytrrium beeds ) that cleared 22+ lesions all under 1 cm from my liver in 2011. I had had IPi just prior to that.


I do not know the social circumstance but basically you have not time to waste. Dr Stedman in Southampton is the doctor that has done most SIRTEX to OM in the UK technically he is brilliant and a really good doctor + a nice person which is more than a patient can usually hope for! Dr Jonathan Evans also does sirtex in Liverpool also focussed on  OM- he was also on the guidelines developement group.


I travelled from Doncaster to southampton for immune therapies it was very arduous I would advice your mother transfers to Southampton.


Currently the fashion is to treat with lvier perfusion using a device made by Delcath. That was only available in the US when I had my first liver treatments. I could not afford it as it involves at least 1 night in ITU often more. It is a repeatable procedure in Holland and the US they do 3 or 4 treatment s here we only do 2.  I do not think the results have been any better or worse than SIRTEX some respond some dont.


Sirtex costs about £30 000 in UK it is a one off procedure it wiil work or not depends on the abiliy of blood vessels to recieve the angio entered radiation and the susceptablitly to radiation of the tumour. If you can afford  or your mother can get on and get it quick with either the 2 guys I mentioned.


Delcath is not currently availble at the moment people diagnosed in feb  are waiting for dates in May.


The only trial is a mek inhibitor + AKT inhibitor it has a quite a lot of side effects. I looked at it in Germany a couple of years ago and they advised I was too well. If you opt for othre treatment first one is excluded from this trail It is not a proven therapy should do well theroetically but the small molecule inhibitors have failed to live up to their promises. Adding about 8 - 12 weeks stable disease but no overalll survival benefit . Most patients will need a dose reduction or 2 due to intolerable side effects. the odd thing is progression seems really rapid once it starts folliwing small molecule inhibitors. There is no point in Dacarbazine.It has never been trailed in OM even in skin melanoma it is no longer used by those in the know.


Immune therapies work is about 5% that is very good odds for OM (Dacarbazine has a response rate of less than 3% and some say less than 1% MD Anderson in Texas- they reviewed all their use of Dacarbaziine and came up with these figures. Ipilimumab is availbe to OM NICE guide lines on first line use so cannot be refused. It is as I say only about 5% response rate but those where it works can have a prolonged remission or stable disease- I remained disease free for 2 years for only 4 infusions combined with the SIRTEX in 2011. I did get side effects but one recovers once the infusions finish.


My husbands family are all Vets in Northern Ireland and his cousin is a prof in Glasgow in VEterinary medicine. I  had horses in Yorkshire and made good use of equine clinics! Om in horses is different I think they have less hetrogenecity than we have and the same with dogs so their disease seems more treatable.



The ~Spire Southampoton does SIRTEX privately . Sadly the technique is highly operator dependent and if Dr STedman or Dr Evans at Liverpool are fully booked I would recommend Dr Nutting in Co USA he has treated the OM mets with SIRTEX or Theraspheres for nearly 10 years. If control of the liver is gained one might get at least a year of respite. before disease returns. 

I will PM you Little white envelope top RH corner.


Om had no NHS funidng for SIRTEX its the wrong sort of cancer.


I do not understand the logic of chemo embolisation of widespread small lesions. Only a few can be treated by this method and those untreated will grow and enhance the growth of new lesions. If any one can explain why treating a few lesions in the liver is of benefit I would be really intetrested. I think there have been inadequate trails and it is an easy procedure so it became the fashion. Mainly led by Dr Sato.  Dr Vogel nearly always does it before  any other procedure the logci being that it sensitizes ther cells for further treatment. This may well be true in Colon cancer however I do not see any evidence of this in OM.

However metastatic OM is poorly understood and there are some patients who will do well - like me - with treatment - probably the 5% who respond to ipi. So it may be something individual to that patient and immune system and may explain the anecdotal report of patients who have responded to Dacarbazine- they would have done better than average any way. HOwever my longevity 5.5 years still running 5k daily suggests that something made a change in my diseaese.


Having no treatment is an option and some patients do well for up to a year to 18 months however they again are probably people like me.


After Ipi there is pembrolizumab which is an immune therapy but one has to have failed IPi first. There is a trial at MOunt Vernon combining nivolimumab and ipi which would be a possiblity after the liver is treated.


Are you sure there is no disease else where have they checked?



#6124 On Average, Does Delcath Help? Under What Circumstances?

Posted by Demp on 08 July 2014 - 04:15 PM

Hello Michael and other forum members. I am posting the results of my recent Delcath treatment for the information of everyone here.  I have not received any other treatment as yet as I decided to try get my liver tumours reduced first like Eric above give the immunotherapy drugs the best chance of working.  


So the changes on my liver lesions are because of Delcath alone.


I will break down the information according to the headings in Michael’s previous post.


  • I had an MRI scan on 30th October 2013 which showed 10 visible lesions.

  • The three largest tumours were 3.0 x 2.9 cm, 1.9 x 1.2 cm and 1.2 x 1.2 cm.

  • In early November I underwent a biopsy to confirm diagnosis of metastatic melanoma.  I then underwent a laparoscopy in Southampton at the beginning of December which confirmed microscopic disease throughout my liver and resection was not an option.

  • I underwent 3 Delcath procedures in December 2013, January 2014 and March 2014.  The first two at a dose of 3mg per kg and the last at 2mg per kg due to some of my liver function tests being elevated.

  • I had a second MRI scan 26 weeks after the previous one in October.

  • This MRI scan was 8 weeks after my last Delcath procedure.

  • The first of the three largest tumours has reduced from 3 to 1.2 cm, the second has disappeared completely and the third has remained stable.

  • There are no new visible lesions and the other visible lesions from before have either reduced by at least 50% or are no longer visible.


I hope that helps give a definite picture of the effectiveness of the procedure. I cannot speak highly enough of the team in Southampton. I was cared for excellently. It is as Eric says a difficult operation on the body but recovery is relatively quick and after a few days you feel normal. I would be happy to answer any questions on it.

#5129 Scottish Members

Posted by Matt P on 03 July 2013 - 09:33 PM

Hopefully I'll be in Edinburgh next April running the Half Marathon for LOORG / OcuMel UK so if any of our Scottish residents fancy it then please join me, or just come along and shout at me....... Faster Boy, run FASTER.....

#6856 Uveal Melanoma National Guidelines

Posted by marc on 11 September 2015 - 09:16 AM

This is not a true statement.
The availablitly of SIRT has nothing to do with the guidelines- you have not researched the historical funding of SIRT

The methodology used by the guidelines group was dictated by NICE not the other way round that you imply. Your understanding of this subject is very limited and it would be best if you do not post incorrect misinformed information.

#6664 Bit Of Advice

Posted by marc on 22 March 2015 - 07:43 AM

3 am you poor things. It is great that it was an ulcer and not the varicosities caused by large livers. That can heal. The question that the consultant asked is something that doctors and nurses are encouraged to ask. However as an ulcer is treatable it is a bit off. A skin melanoma patient who feels fit and well did do one of those advance directives  some time ago when she became stage IV.

She recently bled into her urine from a kidney metastases. She was fit and well to that point leading a normal life. Could easily have had kidney removed. However consultaant came to her and said in view of your advanced directive we will not treat you - you probably only have a few months left- she became stage IV 3 years ago. This was a big shock she meant her directive to be taken on board if she was not concious and not in a good quality of life and not able to make a decision. Here it was used against her.

I advise against such things. NHS is cash strapped  Not treating patients is cheap.  I would go over that question again with Rick. For example if there was a sudden re bleed from his ulcer( rare complication but not impossibel) he might lose conciousness from the bleed- would he not want the  ulcer treating again??? ONly he knows but with a DNR ( Do not resucictate order ) they would be able to leave him untreated with a clear conscience. Ricks situation is very different from mine but it is his call whether he would want to go through the gastroscopy etc again. If he told the Doctor in the night that he did not want treatment in the future and now changes his mind then insist that he was ill and was not in a fit state in the night to make that decision and now he retracts it and you wish that removed from his records and he should ask to see his records to check that it is removed. If he feels now is the time to accept things- a time that will come to all of us then it can just be left.


I never have ID on me when I cycle and I have not allowed my medical summary to be up loaded so it is not accessible in an emergency. This is because if I was knocked off my bike by a car and i was unconcious and bleeding from a ruptured spleen etc , although that is treatable the doctors might choose to allow me to die because of my stage IV melanoma.


I am dreadfully sorry and applogise for the NHS, the organisation I gave the best years of my life too and believed in 100%, but sadly yes it was good you were on this forum and I advised you to dial 999. I cannot beleive the doctors did not realise it was maleana and adivse you as i did. Unless  they had decided Ricks condition meant he was not worth it.


I advise anyone if they can possibly afford it to take out private health insurance. Sadly there is not an acute service privately but at least there is a planned service that delivers health care if you can pay or are insured.

#6635 Uveal Melanoma National Guidelines

Posted by marc on 05 March 2015 - 06:26 PM

Respectfully, I have zero interest in discussing the published guidelines or anything else post facto/done deal. I provided my input formally and in writing to all concerned at a timely fashion (2 years ago), and asked to join the committee and was turned down- evidently people felt I was not... compliant enough.


Micheal this was never a personal statement about you. It is not respectful at all to pretend it was.  You were not inculded on the guidelines group- (- comimitte s would be a wrong description) as you did not attend the first meeting and express an interest. At the time it was started nobody was interested in giving much thought to Om Metastatic disease.  Some people did attend the first OM conference and speak about change in the attitudes to OM and the metastatic patients.  Ideas quite novel at that time  were expresssed and shared-  location should not make an impact on the choices that the patient was offered and that the pateint should have the same expectations as any other cancer and be informed. This was not the normal patern way back then. Some people joined the group with the sole intention of maintaing the status quo others wanted radical change. All parites moved their stance in the end.


After the group started prominent interested parties who had at first boycotted the group became interested in joining. New members were allowed in a second wave. However the group decided that following the new additions there should be no new members . The reasons were the group was very frationated and there would be a constant stream of new additions of supportors in the various camps. There would be no consistency.  People would drop in and out and the number of people who had been throught the whole document and evidence woulod become very small.


Your application came after many prominent practising clinicains  in  associated fields had their requests to join the group turned down  and you had the same response as they had.


All interested parties were allowed to comment on the guidelines and their comments were answered at the peer reveiw stage. Some led to changes some did not my understanding was that you were included in the peer review.


There was no judgement about you personally at all and you were no less and no more  compliant than any of the members of the group with them all having different view points.


Dr Nathan is  a well resepected chairman of the group and struggled well to find a middle path that all members of the group could agree with. There is no process for rare cancers and their assessment and to begin one must first have a plan and then rearrange that plan when it is seen to fail. If the plan does not start with a formal review and assessment of the standard of evidence supporting proposed actions ,then that  reivew would fail to have any peer / NHS respect. If there was an effecitve treatment such a document would be easy. However creating guidelines where no evidence exists and small patient numbers is not going to be ideal ever.


The CDF is no longer relevant it is cost limited and sadly no new drug will have the evidence to support high costs in  metastaic OM. CDF and patient access schemes are being replaced by PIM- promising inovative medicines - medicines that have evidence that support their use in specific indicationa. Most metastatic  uveal melanoma  patients only get access to modern treatments on patient access schemes prior to the license. PIMS will replace this as OM will continue to be excluded from new drugs there will be no access to PIMs.

Soon it may well affect the access to proton beam- as of course it is much easier to use gammaknife- even though proton beam is the gold standard of radiaion and has long term follow up, and less co lateral damage.


All rare cancers are affected in this same manner. It is not that specific a problem to OM.


Most patients did not get  scanning Micheal you are wrong  the centres did not admit it but after 2 years someone often would start asking the patient did they really want to travel that far?? Also most pateints did not even know they had the type of cancer that could kill.


In 2011 you could apply on exceptionality now since 2013 that will fail as pharmacists in the cancer drug fund have decided to ignore medical advice on diagnoses and classification of diesase and to re classify all melanomas as the same disease. Even though this is contray to all the leading cancer organisations in EU and contray to the classification the NHS has signed up to the EU for. Pharmacists have taken the commercial document of the license of Ipilimumab and said as it was approved without formally excluding OM totally it is the same diseae as skin melanoma and should be known as melanoma. This was not a reasoned arguement but just something a pharmacist who is unnamed and not responsibel or accountable to anyone decided. The NHS refuses to release the name so the professional body responsible for checking the professiaonlism of pharmacists is unable to investigate. It just highlights the low standards of many of the "professional " clinicians who are now solely decide life and death issues without any responsiblity. They have no honor in their profession They are not prepared to stand up and be accountable for thier actions.  EXceptionality has always been hard but since 2013 it has been impossible to prove and it is totally unrelated to any guidelines- the pharmaicsits had not even read either the licesnse document or the NICE Guidelines for IPilimumab that they quoted, they just said what they thought the documents woudl say all melaomas are the same disease now.



It is for those without metastatic disease now to take the second step and fight for more modern care. The basic key that patients must be provided with an oncology opinion was actually quite a marked leap- that resources should be allocated to such a cancer- till that point many felt any attempt at treatment was futile and the money would be better spent elsewhere. Pateints should have high expectations for that oncology team and vote with their feet.


Rare cancers should join together and fight for the same rights as other pateints with incurable expensive illnesses like diabetes, heart disease, COPD and gender dysmorphism obesity drug addiction etc.


People should be advised that the NHS does not cover all necessary care and they should find other ways of funding rare illnesses as the NHS cannot.


I do not agree with all of the guidelines and many things I would have liked otherwise. However if one could not achieve consensus there is no movement at all. That is democracy. It is flawed and things move much swifter under dictatorships but it does not make them correct.


The funding failure in rare cancers is nothing to do with the guidelines document. Rare cancers are just not worthwhile to anyone. You are totally wrong to link the failure of exceptionality funding it has always been nearly impossible but now since 2013  there is no appeal and no responsibilty as the doctors are removed from the decision making process and replaced by un responsible semi allied clinicains who are called " professional" but are not monitored by any  governing body and have no standards of practice the situation  is hopeless.


Like all cancer pateints trails need to be more "what the pateint wants type trial" no longer should patients give up their lives having been radomised to dacarbazine it is not good enought for skin melanoma pateints to be satisfied it is even less satisfactory for us.  We need to develop access to trials across EU for all patients with rare cancers that way progress will be made more quickly.

#6623 Hi, New To This And Very Confused

Posted by aardern on 02 March 2015 - 10:46 PM

Hi James..sorry to hear about your mum..my husband has mets from ocular melanoma and all his treatment has been at Southampton..they are really good..we tried at christies in manchester and it was an absolutely hideous time..the drs thete didn't know answers to any of the questions I'd asked..they told us he was starting treatment on a particular date yhen when we got there they wouldn't do it..it was awful..I know southampton is a long way to go but we're from Buxton and we travelled..its well worth it..hope all goes well for you and your mum.

#6576 Plaque Radiotherapy Next Week

Posted by marc on 04 February 2015 - 07:26 AM

Sorry you felt so lonely Trish. I remember all of that and sitting on the internet late at night much to husbands distress!


I am glad you are having the biopsy. slightly over 50% of people will be 100% cured by having they eye treated. Sadly for some despite woderful eye treatment the disease will come back in the liver. Then we are talking about trying to prolong life. This bad thing did happen to me in 2009.


Aintree- yes there is a good liver surgeon who is very good at Aintree. The Oncologist is at another hospital in Liverpool and the internventionist is at the Royal. I know they were talking of setting up a virtual MDT (multi disicipinialy team) to specialise in OM.

I would still advise to make the journey to Southampton. The reason for this is that a  proactive team that believes in treating disease at the sub cm stage seems to be a costant feature of the care of pateints like me who unexpectedly survive longer with metastatic disease. The surgeon and intervnetionist in Aintree both take this attitude , however the oncologist is tied by the need to enter patients into clinical trials - patients need lesions to be a minimum of 1cm to enter a clinical trial so there is no haste to treat early. I did not have a cm lesion till i had had metastatic disease for 5 years. So early treatment is more likely in Southampton. You need not make these decision s till you know the result of your biopsy and hopefully then you will get the good resutl.


So concentrate on next weeks treatment really brilliant they are treating so swiflty. Liverpool is good at getting on with things. You can take you mac book but remember thieving does go on in hospitals so be careful about who sees it out. I was robbed while i was in Sheffield I fell asleep and a drug addict lent across me to take my ipod docking station and ipod from my locker. Everyone else had curtains drawn so no one could see me and I could not see due to dilated eyes etc. Once you have the plaque on you will be in a private room. You may not have internet accesss so think about getting a good dongle for your macbook.


Sorry i was away



#6135 Mri In Other Countries

Posted by Michael London on 13 July 2014 - 08:14 AM



If somebody has access and/or can afford it, one may wish to consider the quality of the MRI as opposed to price/convenience.


Not all MRIs are equal:

  *   Not all MRI machines are equal ^^^

  *   Not all MRI protocols are equal (slice thickness (2.5mm or less (good)), not only axial slices but also coronal images (good), gadoxate (Eovist/Primovist) vs other contrast agents, with diffusion-weighted imaging (good) or not (bad), etc) ^^^

   Not all radiologists are equal ^^^



The above makes more of a difference in post-metastatic surveillance, in low-volume disease, in small-lesion-size disease; and in oligometastatic disease (including large lesions) where the presence of smaller lesions is uncertain.


   *   For example, if after brachytherapy, the first (e.g. 3mm lesion) is missed, and the next MRI is in 6 months, this may easily result in your missing the opportunity to:  a.  Have a laparoscopy/biopsy/laparoscopic liver ultrasound now to see if miliary/peppered or disseminated disease now (in which case, if yes, you would go for a perfusion technique (such as PHP Delcath or SIRT) now (and not local ablation/resection/cyberknife/TACE), or for systemic treatment now);   b.  Do local ablation/surgery/Cyberknife/TACE now (if no peppered/miliary or disseminated disease);   c.  Shorten the MRI interval to e.g. 3 months;   d.  Add chest and pelvis CT and/or PET now to achieve full staging;  etc.


   *   For example, if liver metastatic disease is identified in latest MRI and the issue becomes which treatment modality to use: local ablation? surgery? TACE? SIRT? PHP Delcath? etc. If a single (or maybe 2 or 3, all close together, generally >3-5 years after primary) tumours (say 0.5-1 cm each) are identified and they are technically resectable (clinical appropriateness is a more complex issue not discussed here), then surgery/local ablation/Cyberknife/TACE may be a possibility (but only after establishing by laparoscopy/biopsy/laparoscopic ultrasound that no miliary/peppered/disseminated disease). BUT if the radiologist misses a couple of other tiny lesions (say 3mm each at a different part of the liver, easily missed on a poor MRI/poor image review), then you would be likely to undergo e.g. surgery/local ablation/cyberknife etc where the clinical value of these interventions is, at best, questionable. In my opinion, these clinical options under these circumstances are a mistake, especially as the patient has other treatment options (TACE, SIRT, PHP Delcath, systemic), without excluding the possibility of combinations, of course.


   *   Regrettably, this has happened with many of you in the US, UK, Canada and Australia. I know that for certain as many of you have sent me the actual primary reports which show that these type of mistakes can and do happen. For example, one of you was told he had only one lesion and underwent surgery, only to be told by the surgeon after the surgery that during the surgery he saw two smaller lesions in other parts of the liver, which on closer retrospective inspection were in fact visible on the MRI prior to the surgery. Since the MRI had happened at a different hospital to the surgery, the surgeon pointed that out in his report. But I assure you, that if the radiologist and the surgeon worked at the same hospital there is no possibility that the surgeon would note that in his report and expose his colleague with whom he works every day - instead, it would all be handled... 'diplomatically'.




   *   Does anyone of you reasonably expect a radiologist/oncologist who has just recommended/has previously done an MRI on you at his hospital to tell you: "Well, our machine is not the best there is." ??!!   "Actually our protocol does not include coronal slices because of the additional cost, but it would have been great if the hospital management allowed the cost for us to do that too" ??!!    "Our radiographer is rubbish, but what you gonna do." ??!!    "The reporting radiologist is too busy and he rushes through scans- I wouldn't be surprised if he has missed a couple of small lesions" ??!! , etc.   Of course, you will never be told that!!!


     If anyone understands NHS/hospital culture, you will understand that you will never hear the above, even if they are true. Politically, this cannot be said in the NHS or private hospitals. Can you imagine the political, interpersonal, legal and publicity ramifications if someone says these things ?! Patients would then say e.g. "so the machine at X hospital is not up to par and they have been scanning thousands of people there for years??!!".


   *   You have to also understand that things like MRI machines are extremely large capital costs and cannot be replaced often- even if there are better machines available. So everyone convinces themselves that that machine/protocol etc is the standard/acceptable quality. Think about it- what choice do they have? To admit malpractice/poor standards to themselves or to others? To leave their job? To suffer guilt every day? Easier to succumb to cognitive dissonance and post-rationalisation. You have to understand that there are really no meaningful standards for radiology- in terms of machines/protocols/review etc.


     You may also hear the false argument that "there is no evidence that this machine/protocol/etc is better at detecting lesions than another". This is a false argument. Usually, the person saying that is bluffing, counting on the fact that you do not have the knowledge to dispute that statement. Indeed, that statement suggests that the comparison was done and no difference was detected. Again this is a false implication. The best that radiology and we can do is access the best machines/best protocols/best radiologists (see above) and hope for the best. Indeed there may not have been a blind controlled study comparing detection of (small) melanoma liver mets between, for example, specifically  {a 3T Siemens Magnetom Prisma 2013 MRI machine with 2.5mm slices, gadoxate (Eovist/Primovist), diffusion-weighted imaging (DWI) and both axial and coronal images}  vs  {a 1.5T 2004 run-of-the-mill MRI machine, with 3.5mm slices, some unspecified gadolinium-based contrast agent, no DWI, and only axial images}. And it is not likely that there will ever be such a study. But if you are a patient out of the ones above who can benefit from more sensitive and comprehensive detection, which would you choose ?


   *   A second radiology review of the images may also be considered in some cases. I do it for every scan. So far, it has been money extremely well spent. But you need to be discreet and manage the ego/politics of the initial reporting radiologist and the team of that hospital.



Just like most aspects of surveillance and treatment, UM patients have to use their head. Radiology is an excellent example.



Happy to receive the response of any radiologist, radiographer, oncologist or hospital on this, on the usual condition: I reserve the right to make public both their response and my response to them.





Copyright 2014

#6090 General News Updates

Posted by Popeye44 on 13 June 2014 - 06:02 PM

June 2014 update from OcuMel UK is on the website. It includes updates on NICE guidelines and consultation documents related to PHP and Ipi.




Also - NICE final appraisal determination document link on Ipilimumab in Advanced un-resectable Melanoma is here




Unlike the draft document, the final appraisal determination includes references to Ocular Melanoma (on pages 30 and 38).

#5856 Nice Has Refused Ipi For First Line Treatment In Melanoma

Posted by Popeye44 on 27 February 2014 - 12:14 AM

Keith - I think Michael covered that potential issue in his post yesterday (4:18pm) when he said "... Of course, there could be a disconnect with your blood tests. ..."


Michael/Lesley - Thank you for this discussion ... Question must be, what do we do about it. By 'we', I mean the whole OM community, those with mets and those without but anticipating that the day will come. It's in all our interests.


1. OcuMel UK?

2. Individually write to our MPs, c.c. NICE ( an unfortunate acronym)

3. Collectively/individually/OcuMelUK - write to Dear Jeremy.

4. ??

5. All of the above?


The overall cost cannot be that great in the grand scheme of things. Why? Because we are a small community. But there are numerous other small communities all competing for the crumbs (relative) off the table. Gather enough crumbs and you have a loaf.


So - shouting louder than others might need to be the name of the game. Do we know any celebs or politicians who can open doors, a la Joanna Lumley and the Ghurka campaign? Is there a PR person in our midst who can manage a campaign?


Are there any nationally respected medics who believe that the decision is flawed?


Is ipi like mobile phones or TVs? As soon as you've bought one, it's been superseded, so you put off buying one. This is from a NICE perspective - of course.


I don't know but I'm willing to listen and join the argument.

#5831 Practical Treatment Of Metastatic Om Made Simple (Summary)

Posted by Michael London on 15 February 2014 - 01:14 PM



As at Feb 2014, below are the practical treatment options for metastatic disease. I would be extremely hesitant to try anything else.

   •  The choice of treatment depends on number of lesions, tumor volume, location, speed of progression, molecular profile, patient age and performance status (~overall well-being), etc


The BEST options are (in no particular order):
Liver-directed: SIRT, TACE, PHP (Delcath), immunoembolisation, HAI/IHP
Local: Surgery, RFA/MWA/cryo ablation, radiotherapy (esp. SRT/cyberknife for liver and selected other organs and SRT/cyberknife /gamma-knife for brain)
Systemic: combination 
trametinib (Mekinist) + c-MET inhibitor (cabozantinib (Cometriq) or crizotinib (Xalkori)), trametinib monotherapy, c-MET inhibitor monotherapy, targeted therapy clinical trials (especially in combinations, in particular eg. MEKi + PKCi/AKTi/Pi3Ki/METi/IFG-1Ri), trametinib + idelalisib (Zydelig), , sorafenib (Nevaxar).


If NO BETTER options (including meaningful clinical trials, see above), then consider the following, including off-protocol, with your physician’s advice, but strongly prefer to do so in combinations: ipilimumab (Yervoy), VEGF inhibitors (bevacizumab (Avastin) or aflibercept (Eylea)).


Only if NO OTHER options (including meaningful clinical trials, see above), then consider the following, including off-protocol, with your physician’s advice, (preferably in combinations): TIL ACT, immunotherapy clinical trials in combinations eg. in particular ipi+X, anti-PD1/L1+X), vaccines (eg RNA-electroporated dendritic cells) + immunostimulant [eg ipilimumab, anti-PD1/PD-L1, LAG3, IDO, KIR inhibitors*, TIM3 modulators*, CD-137, OX-40 agonists*, etc]), HDAC inhibitors (eg. vorinostat (Zolinza), valproic acid)

   •  Evidently, the evidence base for these is lower than for the above.


For “pseudoadjuvant” treatment, ie no visible disease after prior treatment (usually surgery), I would consider: ipilimumab (Yervoy), vaccines (eg RNA-electroporated dendritic cells) + immunostimulant [eg ipilimumab, anti-PD1/PD-L1, LAG3, IDO inhibitors*, etc]), HDAC inhibitors (eg vorinostat (Zolinza), valproic acid), sunitinib (Sutent).

   •  These can also be considered for very very low volume disease that is stable for a very long time, especially if in multiple organs, but always if you do not have one of the better options above

   •  For both these uses, there is very little direct evidence

   •  (Sunitinib to be considered only for no visible disease, and even then, probably not as the preferred choice) 

*As at Feb 2014, anti-PD1/PD-L1, LAG3, IDO inhibitors only available in clinical trials

See http://www.eyecancer...ns/?hl=adjuvant




   •  Not all of the above have the same level/quality of efficacy or robustness of evidence.

   •  Choices should be made generally assuming that the lower the level/quality evidence, the lower the likelihood of (significant) clinical benefit

   •  The choice of treatment depends on number of lesions, tumor volume, location, speed of progression, molecular profile, patient age and performance status (~overall well-being), etc

   •  You will find the references in my past emails (especially the past few days and weeks).


Consider printing this with and taking it to your next oncology appointment, as well as the relevant references from other posts, in case you get stonewalled with 'There is no evidence for this', or similar.

   •  If your oncologist really believes that that 'there is no evidence for this' or offers treatments other than these, then he is most welcome to:

         a. Put that in writing, eg email (including eg. by sending me an email at michael_london_w1@hotmail.com), with the understanding that I reserve the right to make his email(s) and my response(s) public

         b. If he feels he can produce a better high-level summary of practical treatment options, then to do so in writing (eg. email) with the same understanding as above.

   •  His potential reluctance to do either a or b (based on whatever pretext) would speak volumes 



Copyright 2014

#5804 Body Follow Up Scans

Posted by marc on 08 February 2014 - 12:52 PM

I have a contact its a patient care coordinator I would try her first. What we need is a petition.


So your name can be added to it David- anyone else?

#5802 Body Follow Up Scans

Posted by marc on 08 February 2014 - 10:32 AM

I feel we as a group should take issue with the £25 00 fee. I didnt mind £10 but £25 00 on top of the car parking charges is profiteering in those who have no choice. It s ok if we die quick but if we live it will add up- I have had 3 monthly scans since 2010-So as I have survived thus far I would have spent £300 just on getting copies of scans- why do we need them because of inadequacies of the NHS. They are profiteering out of us. It only cost £50 to ge full copies of the notes- my notes are about 2 foot deep in S'ton it would take a lot of time. To copy the scans to disc takes a push of 2 or 3 buttons . I did not pay last time as i said if I was going to pay £25.00 I would rather pay £50 and have copies of my full notes as then i would know that some work had been done. We travel a long way at our expense - it would cost a lot if we asked for NHS travel- many of us have trouble seeing especially to drive at night.- They do not send us appointments far enough in advance to let us book cheap train travel. It is unreasonable to profit out or us. (£25 00 is the fee in Leeds- Christies it is as well but the waved it.Doncaster last time was £10.00.


Anyone with me on this?

#5714 Warning! Scam Adverts On Eyecancer Forum

Posted by KeithT on 19 January 2014 - 11:05 PM

Please be aware there are some scam adverts on the opening page headings talling you that Windows updates are needed and that your disc space is low.

They are scams

#5661 Conjunctival Melanoma

Posted by marc on 23 December 2013 - 11:30 AM



You are correct conjunctival melanoma is considered as skin melanoma and the leading specialists in skin melanoma recomend that you follow the guidelines for management of skin melanoma. Certainly that does involve mole checks. Choriodal melanomas are also more likely to get skin melanoma but not as likely as conjunctival melanoma..

they would only know where it started if it was genetically similar to a lesion elsewhere. If a choroidal melanoma has the BRAf mutation it is generally thought to be metastatic but a BRAF mutaion in a conjunctival melanoma would be just as common as in a skin melanoma. Which is good as there are lots of good drugs for that type now.


This is the link to the UK guidelines skin melanoma http://www.bad.org.u...elines 2010.pdf I confess I have not read it as it is not relevant to me.


If you read it and need questions answereing just start a new thread- conjunctival follow up compared to skin and I will read the bits that you queery.

#5643 At The Risk Of Repeating Myself...

Posted by marc on 08 December 2013 - 08:53 PM

He was an amazing guy who is never far from my thoughts - lives on.

#5637 At The Risk Of Repeating Myself...

Posted by marc on 07 December 2013 - 11:58 AM

Hi Jay Jay,


Welcome sorry you are here.


I do not like it when I am given the minimum information. one never knows whether that is because , no one knows, they dont know and cant be bothered to find out, they are hiding something etc. One ends up feeling suspicious no matter what. I think most intelligent people are curious about their illness.


Conjuctival melanoma is really really rare and mostly has a good outcome . It should be treated the same as skin melanoma. Nathan at Mount Vernon is an onocologist who is more aware about it than many . He is truly an oncologist where as in Sheffield they are eye surgeons who do good jobs but oncologists are the ones we turn to when all goes wrong. There are a few conjunctival melanomas who are members of this forum.


Hope the eye responds and thats the last you hear of it. Do join Ocumel.uk . The more people who aer aware of eye cancer in all its forms is important.

#5632 Followup

Posted by Matt P on 06 December 2013 - 10:48 PM

Had my annual 6 month followup in Liverpool yesterday and to my surprise it seems that my tumour thickness is down by 1mm. Feel's so good to actually hear that after a year it's starting to shrink. Also of note is that the fluid causing my detachment has gone, probably thanks to the two Avastin injections in the summer. Yay!!!!!!!!!!


#5566 Delcath Procedure

Posted by Brendan on 21 November 2013 - 02:07 PM

UPDATE: Just back from Southampton scans on 19&20. Good news, nothing showing. We know it’s there as observed in Aug with scope - but no measured progress. Southampton Team people are a little excited - Going for a second Delcath blast ASAP - early Dec. Oncology making way for Delcath.  We are afraid to speak just in case it’s a false dawn. Everybody is learning. The more they do it the more they learn. The more understating is gleaned for getting appropriate candidates. (Big shout out to Pat ;-))


B.T.W.  Bel walked from the hosp to the airport last night.  6 miles ish I think, not by design rather by accident - no flippen taxis on road. But she walked it in the dark & cold - was to be fitted for a coffin for Xmas. How cool is that!!

Will report in after next event.