Uveal melanoma within the liver has the potential to grow quite quickly. In some cases, tumours can double in size in as little as four weeks. One of the aims of OcuMel UK is to increase patient access to liver-directed therapy.
In the absence of evidence provided through research, it is the experience of some centres that, in patients where metastases are confined to the liver, some people may do better when their liver is brought under control initially by liver-directed therapy. OcuMel UK would welcome and support further research into this emerging area.
Liver Surgery (Resection)
Liver surgery is best for patients with small numbers of tumours and easiest if only one side of the liver is involved, however even very large lesions may be removed if there is enough clear and healthy liver that can be left behind.
Liver surgery can be done as “open” surgery or “keyhole” surgery, depending on the individual case. The results are the same for the two types of surgery, but recovery is usually faster with keyhole surgery. Before you decide to have a resection, your surgeon will ensure you understand the risks of the surgery, and are prepared for the recovery process.
Unfortunately, most uveal melanoma patients have diffuse disease in the liver for which surgery is unsuitable.
A major liver resection, 5 of my 8 liver lobes were to be removed, was a daunting prospect. There’d be a lay-up of two months afterwards and lots of home care involved. Nonetheless, that was what I needed to clear my liver mets and in retrospect it was clearly the best option. After several scans, and a laparoscopic viewing three weeks prior to check the disease wasn’t peppered, the day finally came to undergo the operation. My partner, Gen, and myself had arranged childcare for our six-month-old son (it was a very harrowing time!) and sat nervously in the hospital waiting room for hours before finally being called through and then things finally got moving.
I’d already seen one of the surgical team earlier in the day and so we’d gone through the various checks. The call to action was easier because of that, and I was asked to change into one of those drab gowns! We said our goodbyes and I was put on a trolley and whisked away to a team of competent and friendly anaesthetists who did their best to make me comfortable. I was warned that such a major operation would mean I woke up with about eight tubes running out of me and a lot of time was spent affixing things. However, they were so kind and chatty that I barely noticed. Finally they came to put me under and the operation was imminent.
Next thing I knew was waking up in the ICU with an aching shoulder. I mentioned this and was given painkillers and drifted straight back. My next waking moment involved a visit from the surgeon and two of his team to let me know all had gone well. That was relief and I asked the nurse if she’d mind calling Gen who was sat worried with my visiting Mum. Things were looking up.
The next few days involved lots of monitoring and gradually making small steps to permit eating and walking, albeit slowly. I was on a shared ward with other liver patients and had a drain from my abdomen, something inserted near my neck, a catheter, a blood pressure cuff, a drip and a couple of other items plugged into me.
I spent five nights total in the hospital before being let home. And despite the limited movement each day saw new and small improvements and within a couple of weeks I managed to walk to the local newsagents. Home visits from the local nurses were invaluable and the 43 metal stitches we removed after a couple of weeks. Over time the 11” scar from the operation has improved immensely and whilst always visible is pain free and I continue to live an active and full life.
Chemosaturation therapy (CHEMOSAT®)
Also known as Percutaneous Hepatic Perfusion (PHP), or by the brand name “Delcath”, PHP may be an option for patients with diffuse liver disease. The treatment isolates the liver from the patient’s circulatory system, and allows for the targeted administration of anti-cancer drugs at dramatically increased doses.
The treatment is given via an infusion catheter, which is inserted through the skin into the femoral artery. The blood is then cleaned before being returned to the body.
Early trials utilising this technology with uveal melanoma patients have shown promise, doubling overall survival over other targeted liver therapies – Read more here. You can find out more about the treatment on the company’s website Against The Odds.
The phase 3 FOCUS trial is currently recruiting at the University Hospital Southampton and St George’s University Hospital of London.
Europe – Austria, Belgium, Germany & Italy- currently recruiting
France, Spain & Switzerland – Not yet recruiting.
United States – California, Florida, Georgia, Illinois, Maryland, New Jersey, North Carolina, Ohio, Pennsylvania & Tennessee – Currently recruiting.
More information on eligibility & contact information for the FOCUS trial can be found here clinical trials. Gov/ct2/show/NCT02678572
I was diagnosed with OM in October 2013 and had exenteration in December 2013. In February 2015 I had an MRI to confirm whether the suspicious lesion in my lung was metastatic disease. The MRI picked up a handful of small tumours (the biggest was 8mm) in one part of my liver, which meant I was a good candidate to have PHP.
Before the procedure I was given a couple of different drugs to take; it is different for each person and I had ones to protect my stomach amongst other things.
The procedure itself is fairly quick; catheters are inserted into the groin (expect to have some spectacular bruising!) and into your neck. The liver is flooded with a chemotherapy agent (in my case, just the section where the tumours were) and then the blood and chemo etc is taken out, filtered and put back in!
You spend time in ICU as standard when having had the procedure. I unfortunately, had a reaction (that’s just me, I’m a ‘challenge’) which meant that I was in ICU under heavy sedation for a day and a half, but it really is the best place to be looked after.
Once everything had calmed down, my tubes and lines were taken out and I started to recover really quickly. The side effects weren’t bad at all for me, the bruising on my arms (from the needles going in) and other places went fairly quickly.
I was home within the week and a few days after I took my two young children to play Pooh Sticks in the Ashdown Forest. Fatigue was one of the side effects but it wasn’t constant and I was able to rest when I needed to.
You have Delcath in two parts, the second is done about 12 weeks after the first one, and it’s the same as before, except this time the team know any quirks of your body and are more informed about potential problems – I was allergic to heparin so they found a new drug thinner for me – as I said, I’m a challenge!
– Delcath, May and August 2015, Aged 43
Selective Internal Radiation Therapy (SIRT)
Also known as radioembolisation, or by the brand name is “SIR-spheres”, the treatment involves tiny radioactive beads inserted into the liver via the femoral artery.
Currently this treatment is not routinely available on the NHS (for uveal melanoma), due to a lack of available evidence. In theory it can be accessed via the patient’s CCG (Clinical Commissioning Group).
It is as yet unclear how much this treatment extends overall life expectancy. The success of the treatment depends on how many other tumours are already growing in the liver, and the placement and blood supply to the tumours that are being treated.
There is an argument for using SIRT to debulk the liver, which can give a palliative effect to the patient, making them more comfortable, but more evidence is needed. OcuMel UK would encourage and support research into the use of SIRT in uveal melanoma.
To find out more about the treatment, please see My SIRT Story, a website supported by Sirtex.
Before my treatment I had a CT and MRI scan so that the interventional radiologist could study my anatomy and decide where to release the radioactive material, whilst also making sure there would be no leakage to other parts of my body. I then had a test procedure where they released a dummy substance to check that it reached the correct place in my liver. The procedure is completely non invasive, and for me it was fairly painless and did not take too long, about 1 to 2 hrs.
I had to lay flat on a theatre bed and directly under a scan machine, which restricted my view of the monitors and staff. The interventional radiologist gave me an injection of local anesthetic in the right groin then he made a very small incision in order to insert the catheter. For me the worst part of this was not the injection, but the pressure he had to put on the incision to help keep the bleeding under control. It’s not for long, a few minutes maybe, but all the same feels a little uncomfortable. After this I did not feel anything else from the procedure apart from when there was some fiddling going on and the line removed when I was stitched up.
After the procedure I had a special scan that was to see where the dummy material landed in my liver. If they are not happy with the results then the work up procedure will be done again the following day, as is what happened to me. It was described to me that it’s like dropping silt off a bridge into a very fast flowing river about a mile down stream from the target, sometimes you will need to drop off a different bridge. If all goes well you will you be out the following day.
After a week you return for the actual procedure where the radioactive medium is injected into your liver. Its very much the same as the work up procedure and some people don’t find it any more uncomfortable than the workup. However if you’re like me and sensitive it can cause some discomfort. About halfway into the injection of radioactive Y-90 spheres I started to feel sick and towards the end I vomited. I should have said something to the team sooner as they would have given me anti sickness medication sooner. Unfortunately the sickness built up a little more and continued, resulting in me having to stay in for one extra day. Usually your stay in hospital is only 1 night, which is also spent in isolation due to the fact that you’re radioactive.
Upon leaving the hospital you need to take special precautions when in contact with people because of the radiation. I was not allowed to sit next to anyone for a prolonged period of time, though sitting 2 meters away would have been OK. With this in mind I spent a week recovering at my parents house where I could be away from my family and not putting the kids, pets or wife at risk to over exposure, I also kept away from public areas.
I was unlucky to carry on having nausea for about a week after returning from hospital and also suffered from some pain and discomfort in my chest / stomach. The team was not over worried about this as some people are very sensitive to radiation and they had seen some of these symptoms before. I was given anti sickness tablets which helped to take the edge of the nausea but over time it dropped of.
The other thing I noticed as a result of the procedure was a lack in energy and strength. This was very prominent when I was active in the first few weeks when walking long distances, but again it faded with time and my strength returned.
Radiofrequency ablation (RFA) or micro wave ablation (MWA) and chemoembolisation (TACE) are other treatments you can access through your liver surgeon and interventional radiologist.
RFA and MWA work by placing a probe into the tumour and heating it up to kill the cancer cells. They are most effective for small numbers of small to medium sized tumours (<5cm diameter), in cases where surgery cannot be offered.
TACE involves placing a fine catheter up through the arteries from the top of the leg all the way up to the liver, under X-ray guidance. Once in place particles impregnated with chemotherapy drugs are released directly into the blood vessels supplying the tumours to block their blood supply and release chemotherapy directly into the tumours. This can be useful for multiple small and medium sized tumours, but is less effective for very big tumours.
TACE is usually done under local anaesthetic with the patient awake. RFA and MWA are usually done under a full general anaesthetic or occasionally under heavy sedation.
Your specialist team will discuss with you the pros and cons of any treatment plan, including which treatments are less invasive, and the risks, benefits and recovery time for each option.
Being told that my OM had metastasised after 8 years was a pretty traumatic experience, particularly as the prognosis was so challenging and, in my case, surgical re section had been ruled after an investigative laparoscopy.
I was told that a relatively new procedure, Chemosaturation, was my best option to try and clear the liver of metastasis, prior to commencing Immunotherapy.
Chemosaturation was only available at one UK centre and the theatre team required a large number of very specific and highly skilled clinicians. As a result, the availability of theatre ‘slots’ was very limited. The procedure was not routinely funded by the NHS, which further limited availability of the procedure and, as Chemosaturation was new to my medical insurance company, they had not yet approved the procedure.
I was keen to start fighting the liver metastasis as quickly as possible, so I looked for any options that might help contain the disease, whilst I waited for my Chemosaturation procedure to be scheduled. I found a number of specialists, who had recommended Trans Arterial Chemo Embolization, or TACE, as it is more commonly known.
I tracked down a well recommended specialist in Frankfurt who agreed to meet me at a few days notice and he confirmed that , whilst he recommended Chemosaturation as the best option to provide a lasting benefit, he had achieved good results with TACE over a number of years and said that he could offer me a TACE procedure within a week to help win some time, whilst Chemosaturation was being scheduled.
After one immediate visit for scans and an initial consultation a date for TACE was agreed a week later for the middle of November 2013..
The procedure involves blocking off the blood supply from the Hepatic Artery to the liver and then administering a concentrated chemotherapy agent directly into the tumour. Isolation of the liver contains the chemo agent, allowing the radiologist to use higher doses of toxic drugs that do not adversely affect the rest of the body. As I was to discover, the liver has two principal blood supplies; the Hepatic Artery and the Portal Vein. Whilst the healthy liver gets about 75% of its nutrients out of the blood from the Portal Vein, the tumours are almost entirely fed by the blood from the Hepatic Artery.
After ‘gowning up’ I was given a light sedation and asked to lie down on a bed in what was more like a computer suite than what I imagined an operating theatre to look like. One side of the bed was adjacent to a bank of large computer monitors that allowed the surgeon (and me) to monitor the progress of the catheter that he had inserted into a small incision in the Femoral Artery in my groin. I was awake throughout the procedure and found it quite fascinating. The incision and the manoeuvring of the catheter up to the liver was occasionally slightly uncomfortable but by no means painful. When the chemo agent was ‘injected’ through the catheter into the tumours there was a sharp pain momentarily but it was over in seconds.
The procedure lasted under two hours after which I was wheeled into a side room to recover for about three hours. Even when the sedation wore off I didn’t suffer from any significant pain but I did have quite extreme nausea for several hours. I understand that it’s quite common for patients to experience some mild / moderate pain and fever for the first week after the procedure.
After three hours or so I met with the consultant who had carried out the procedure, who confirmed that he was happy with how it had gone. About six hours after the procedure completed I was discharged to return to my hotel. The next day I flew home. With the benefit of hindsight I think that another day of recovery would have been sensible before flying. Travelling with nausea is not pleasant! After a week or so at home, still suffering from intermittent nausea, I was pretty much back to ‘normal’.
From what I understand it is more common for patients to have one overnight stay in hospital following the procedure. From my experience, it wasn’t necessary to do so but some people might have found it to be a preferable option.