The fifth ALK Positive UK forum meeting took place at the Novotel Hotel in London on Saturday 22nd February. Maggie’s Cancer Care Centre in West London on 9th February 2019.
There were 35 patients and 30 carers present.
Debra Montague, Chair of ALK Positive Lung Cancer (UK), welcomed everyone to the largest gathering of ALK+ patients, family and friends in the world outside the USA.
Sophia Holden (Lung Cancer (CNS) Clinical Nurse Specialist at Guys Hospital) has a special interest in ‘non-smoking’ related lung cancers. It is the most 8th common cause of death from cancer in the UK. Cohort of patients tends to be younger, late diagnosis, aggressive cancers and esp. with ALK+ have a tendency to spread to the brain.
She has set up a support group for EGFR, ALK and ROS1 patients. It takes place once a month for 2 hours at Guys but you do NOT need to be a patient there to attend the support group. If anyone would like to attend get in touch with us to find out how.
Ideally, the role of a lung cancer CNS is to be a key worker for the patient who can help navigate at a difficult time. They form an effective part of the MDT (Multi-Disciplinary Team). They should be able to signpost and refer to different services that meet the more holistic needs of the patient although different services and level of access to these services can vary from setting to setting. Support services may incorporate emotional, physical (dieticians, occupational therapists, physios, financial, complimentary therapies). Macmillan has set up a ‘Holistic Needs Assessment’ which takes these things into account.
One patient present said that she has made full use of ALL the support services that have been offered and some have really helped her. Collectively they have made a real difference to her wellbeing. She encourages all patients to do the same!
Lung cancer targets for the NHS include; 90% of patients should be assessed by a CNS, 80% of patients should have a CNS present at time of diagnosis, there should be 1 CNS per 80 newly diagnosed patients..
Cathy Sandsund (Physiotherapist from the Royal Marsden) talked about recent lung cancer research which is showing that certain aspects of fitness (those who are more active and have more lean muscle mass) are correlated with LIVING LONGER!
Research is in its infancy and it is not based on just targeted mutation lung cancers. However the cohort of people who took part in the research tend to be younger/fitter than the average lung cancer patient – just like ALK patients.
She said that avoidance of symptoms triggers (for example, avoiding exercise because it may cause you to cough, feel breathless, feel pain, feel fatigued etc.) leads to a viscous cycle of inactivity and functional decline. People with good muscle mass after a period of ill health (for example a hospital stay) tend to get back to baseline quicker.
Use it or lose it – after 48 hours of inactivity your muscles start to break down. Hospital stays are not designed to make us active. The clothing they provide can be limiting. Family members can help by bringing clothes and shoes that enable the patient to get up and move around in hospital if health/condition allows.
Different types of exercise – cardiovascular, strength and balance. 150 minutes per week is recommended for general population. Strength training (exercise which provides resistance to muscles) should be done 2-3 times a week for good muscle mass. If you are at risk of falling or have falling then balance training 2 x week is also recommended.
You also need good balanced diet and fluid intake to support activity and provide building blocks to muscle. The RNI (Reference Nutrient Intake – the amount to ensure that the needs of 97.5% of the general population are met) is set at 0.75g of protein per kilogram body weight per day in adults. Cathy realises that there can be many reasons cancer patients find it difficult to eat as good a diet as they would like to and getting support from a dietician can be helpful.
Referral to an Occupational Therapist can also be helpful who can help you around the home to help you maintain independence in doing your activities in daily living.
One patient's mentioned about CK levels which show up in blood tests and if are too high can raise concerns. Lots of exercise can raise CK levels. Cathy said it is possible for physios to work with the medics to keep it with range. She also said that inactivity can raise CK levels because of breakdown of muscle (after 48 hours of inactivity).
Another patient talked about having hydrotherapy and how helpful it was in regaining strength.
Dr Rohit Lal (Consultant Oncologist) made reference to other speakers and how treatment is much more holistic now in recent years.
Made reference to evidence that pointed to more muscle mass = increased survival & reduced dose limiting toxicity (amount of chemotherapy you can deliver without making somebody unwell).
His evidence was based on research with chemotherapy but he absolutely thinks this can be translated to targeted therapies and Cathy Sandsund agreed. She said that as soon as you move your circulation improves which reduces feeling rubbish because the movement of fluids (lymph etc.) clears up inflammation and infection.
Questions arose around surgery for stage 4 LC.
This is a new thought process but there is a lot of doubt it is of any benefit.
He stressed that taking away all the visible tumour is NOT the same thing as taking away all of the cancer.
What is significant is that there are cancer cells/DNA/RNA in blood stream.
There are trials of stage 4 LC trialling people who are active and fit and have a good performance status are given systemic treatments and then high dose (curative dose) radiotherapy or even surgery but they have not yet given any evidence that this is a beneficial thing to do.
Questions arose about whether or not GPs are educated/aware enough about non-smoking LC.
He says no there is not enough awareness. We all have MPs we should all write to them about our concerns around LC.
Question about ALK+ patients travelling to areas of the world highly affected by Coronavirus
It is an airborne virus and relatively easily spread. It can cause significant chest infection. Serious complications are more likely to occur in infants/the elderly or those with chronic conditions or are immune-suppressed (included chemo patients but not targeted therapy patients). He thinks the quarantine procedures that have been put into place are appropriate. Using masks (if they are of good enough quality level) can be helpful and of course avoiding people who are coughing and spluttering. This illness will not cause most people to get very ill. With regard to travel to affected areas for ALK+ patients he would wait and see how things progress.
Question around raised bilirubin levels whilst on TKIS and Gilberts Syndrome.
Gilbert’s Syndrome is a rare condition which you are born with that means your bilirubin levels are up to double normal level. Harmless.
There is no treatment to lower bilirubin levels. There are ways of normalising its function.
Bilirubin was not taking into account when developing TKI’s so not official cut off. This is the opposite for AST/ALT which are enzymes in liver that can cause lots of damage and affect other drugs that we use. Rises in these are taking very seriously and 3 x the upper limit of normal would be red line cut off for TKI’s. Whereas 3 x higher levels of bilirubin don’t always make people unwell BUT it is a trend that needs correcting.
When on ALK TKI’s – it can take 5 weeks for AST/ALT to normalise. Other non ALK TKI’s take only 2-3 weeks to normalise. If AST/ALR is too high, it means liver is not breaking down the drug as much as normal so it will be in system for longer. Doctor needs to decide if/when safe to restart the drug at a lower dose.
Question regarding Alectinib and Metformin – any benefit to cancer treatment?
Moderately sized clinical trials suggest no benefit has played out in those taking TKI’s or chemo. This is the same for Malaria medications which have been trialled too.
Question around Genomic Testing from someone who had FISH test and it was negative for ALK but oncologist was repeated and came back positive.
Dr Lal said it is unusual for it to be negative but well done to the oncologist who repeated it.
NICE currently stated that all non-squamous LC patients have to have EGFR and ALK testing before offered immunotherapy treatment as this is typically not effective for ALK and EGFR patients. Lab test take 3-5 days but delays in transport, processing, analysis and reporting means it can take 2-4 weeks. He says this will change and better processes will be put in place. He thinks blood testing will come to the NHS soon.
Question around reducing dose of TKI because bilirubin is too high – is there anything to suggest low dose gives same effect as higher dose?
No hard evidence yet as to how effective drugs are at lower level. But anecdotal evidence gathered by doctors who look at patients and see what the outcome is with patients at lower dose.
EGFR study measure survival at 3 different dose levels and found it to be the same.
Question around what is the gold standard when it comes to scans? Which scans, combining different scans etc.?
They all give us different information. It depends on what type of information are you trying
to get? For most people this is – is my cancer stable/shrinking/growing in which case a CT
scan is good.
MRI is best for brain. PET scan not useful for brain. PET scan good for bones.
Cost is also taken into account. It took a long time for hospitals to stop doing brain CT’s before offering brain MRI. He used to have to do a brain CT first before he could justify doing a brain MRI if the CT hadn’t given the correct information.
Priyanka Patel (Clinical Research Fellow on the HALT trial which is led by Fiona Macdonald) exlained that HALT is a phase 2 trial looking at how to improve outcomes in patients presenting with advanced disease.
TKIs have transformed systemic treatments. Trial would like to find out how to keep patients on TKI’s for as long as possible.
Cancer progression tends to be different in ALK/EGFR patients with only 1-3 areas rather than all over spread which can be seen with chemo/ other lung cancer patients.
HALT trial aims to see if they can eliminate those 1-3 areas of spread so that can continue on TKI for longer.
It used SBRT an advanced form of radiation which uses high dose to a very localised area so damage to normal tissue is minimised.
Lots of evidence already to suggest that SBRT with 1 site of disease but not much evidence for multiple areas.
CT scans are used to routinely monitor. Having had a PET scan is not a prerequisite for trial
The trial also explores how blood samples can be used to pick up on progression earlier than scans.
There was a question on if proton therapy would be better than SBRT radiation because it is even more precise. This is not necessarily the case because with SBRT a low dose of radiation is given to the tissue around the tumour where some non-visible cancer may be.
Another question was around what the barriers were to recruiting more patients – the RECIST criteria that oncologists use to determine progression doesn’t include a few mm increase so they don’t refer to the trial (which would take consider someone with a few mm increase. Or they simply don’t know about the trial.
There is currently no protocol/pathway on the NHS to do what they are doing in the HALT trial.
It is thought it will continue for another year and there will be a drip feed of results and if results are promising it will move to phase 3. They are trying to get the data more quickly by putting double as many patients in the radiotherapy arm of trial than the control arm.
Debra thanked the 77 members who completed our extensive survey in October. She presented some of the results, many of which raised interesting issues but which cannot currently be shared in writing and we may be able to sell this real world data to pharmaceutical companies. As we have many new members since the survey, we are going to relaunch it so we can add to the number, which makes means the data will have more validity and value.
Plans for 2020:
Attend BTOG Conference
Attend LCNUK (Lung Cancer Nurses) Conference
Attend regional meetings of LC Specialist Nurses and Macmillan Nurses
Draft Guidelines on best practice for the management of ALK-positive LC patients in the UK
September Weekend Conference
Distribute Newsletter to key stakeholders
New newsletter x 2
Attend meetings of member organisations
Prepare and publish Patient Leaflet
Survey analysis and publication
Abseil in London on 25 April
Wing Walk with Deb in May
Royal Parks Half Marathon in October
Kensington Gardens Walk in November
Debra urged members to:
Continue to support each other on the Facebook group
Consider meeting up with other members who live near for coffee or lunch
Place your locations of our Member's Map
If they didn’t complete the survey in October, to complete it when it is relaunched
Fundraise or support those that do.
She thanked everyone for attending and looked forward to seeing them at the fully-funded weekend conference in September in Birmingham.