Conference Catch Up November 2019
by Gill Monsell, the volunteer conference organiser.
Held on the 5th November 2019 at the Cromwell Suite, Huntingdon Racecourse. This conference was very well attended, with 70 delegates booked. Together with family members, HCCN nurses, speakers, admin and committee volunteers, this made a total of about 90 people in the room!
Janet, as usual, ran a splendid raffle which contributed to HCCN funds.
The only time that we felt a “squash” was during the breakout groups when Professor Thomas’s group was so large that people at the back couldn’t hear due to the noise of other groups. We will try not to repeat this problem in future conferences!
After introductions by Amanda, (our administrator) and myself, Gill (conference organiser), Karen (head of the nursing team) – introduced all the nurses able to be there and then the first speaker.
Abby is a local GP and Clinical Lead for the CCG and STP.
She has worked in the Huntingdon area since starting her GP training, and until recently had been a GP partner at Wellside Surgery, Sawtry for the last 20 years. For the last 8 years her work as a Clinical Lead has increased and is now her main role. This involves working with local commissioners and the health care system to provide clinical input to the planning, development and delivery of local health services.
Her talk is entitled ‘how to get the best from your GP appointment’ and will help you build a strong and positive relationship with your local GP practice.
“Common Misconceptions – How to get the best from your GP appointment.”
Abby started by reminding us that, hopefully, your GP will have known you for many years and may well have treated your family and friends too. Ideally he or she should be aware of your situation.
These factors should be taken into account :-
– consider what you want from your appointment
– think about what you’ll say and make notes to take with you
– consider taking a friend or family member with you for support
– you might need an interpreter or special consideration for mobility issues
– make sure you take all your records with you as your doctor may not yet have received all your latest treatments or results
Booking the appointment:-
– this can be a frustrating experience these days, in person, on the phone or online
– do you need a face to face appointment ? or would a telephone consult suffice ? – these are commoner now and some practices are starting to use video consults also.
– consider whether you need an actual GP appointment or whether a nurse, pharmacist or nurse prescriber would be more appropriate
– when do you need the appointment ? – is it urgent or routine, do you have transport issues ?
– don’t be offended if the receptionist asks the reason for your appointment, just state your basic needs so that they can point you in the right direction
At the appointment:-
– start at the beginning of what has been happening and state where your information about your problem has come from
– don’t use medical terms unless you are sure what they mean
– don’t try to say everything all at once, be concise and ordered, be honest !
– write down all the important things mentioned at the appointment (research has shown that, if they don’t write it down, patients forget 30-50% of what is discussed)
– if you don’t know something – ASK !
– be clear about the follow on, what happens next ? eg blood test, physio etc
– don’t be alarmed if your GP looks something up. GPs are generalists and although they may not know everything, they know where to find the answer
– it’s a good idea to repeat back to the GP what has been said to you, so that you both know all is clear
There is a MacMillan video online which provides a helpful summary of all this.
It may be a good idea to ask the GP for a letter or note summarising the content of the consultation.
Questions to Abby added the following points :-
– you should book a double appointment if you have a lot of issues
– post cancer treatment you can book a follow up with your GP or your oncologist
– be nice to the receptionist – it pays off !
– you can ALWAYS refer yourself back to your HCCN nurse at any time
– the future of GP practice? Lack of staff means that they can’t do everything. In the future there may well be more video, phone and online consults. You may find that one day, you can have a joint video consultation with your GP, consultant and nurse.
– PLEASE turn up for your booked appointment, or at least phone to say you can’t come. “No-shows” cost a lot of money and the appointment should be given to someone else.
– Although GPs eventually get report letters back from consultants, it doesn’t always work the other way round and you may have to tell your consultant when you next see him/her that you have been to the GP
Suzanne obtained her PhD on “The side effects of chemoprotective gene therapy” from the world-renowned Paterson Institute for Cancer Research and the Christie Hospital in Manchester.
Subsequently she worked as a researcher on lymphoma at the Babraham Institute in Cambridge and has become a world expert on paediatric lymphomas. For the past 11years Suzanne has led an academic research group and also teaches medical and veterinary students in Pathology. She currently holds the post of Reader in the University, Dept of Pathology, based at Addenbrooke’s Hospital.
Suzanne is a renowned international figure in the study of lymphoma and she holds many awards and chairs many research groups, both in the UK and abroad, including leading “ALKATRAS”. This is an EU Marie Curie Innovative Training Network of 14 research groups in 7 EU countries.
She is also co-chair of the Cancer Research UK Cambridge Centre Paediatric Programme.
“How cells change when they become cancerous, with particular reference to blood cell cancers”
Suzanne, who is a specialist in lymphoma, particularly childhood lymphoma, gave us a very clear account of the cellular mechanism of cancerous changes. There is a lot of “cross-over” between adult and child lymphoma and the changes seen in cells are common to both.
What is cancer ?
Cancerous cells have a lack of contact inhibition so that they grow uncontrollably and may metastasise around the body.
SKIN – has layers of cells with the stem cells at the base. These divide and move up to the surface in a controlled manner so that you always have the right amount of skin. If the skin is damaged then the stem cells can divide and repair it.
DNA controls this process and if there is a change in the DNA (a mutation) then this can lead to abnormal cell division. These mutations are then passed on to the daughter cells. Mutations can be harmless and of no consequence or they can be deadly.
Normally the body has a protein called P53 which gets switched on, detects the DNA damage and allows the cell to repair itself. If the damage is too great then the cell is allowed to die. People only have two copies of the P53 gene so if they lose one then there is a problem. Elephants have ++++ copies of the gene and they do not get cancer !
These processes are not foolproof and sometimes the errors in the DNA are missed or mis-read and the cells carry on dividing uncontrollably.
Various environmental factors can cause mutations – UV light, smoking, viruses, diet etc
A new area of research (metabolomics) is looking at whether XS sugars in the diet can “feed” a cancer.
Very rarely a tendency to mutate can be hereditary.
Thus, ANY of these factors causing a dangerous mutation that is NOT repaired can cause cancer in ANY tissue.
It remains a mystery why there are some people who smoke a lot and still do not get cancer, there is a lot of luck involved and there will always be those who “buck the trend”.
To become a cancerous cell it needs to :-
- evade apoptosis (cell death) and ignore the signals telling it to die.
- needs to be autonomous and produce its own food.
- needs to allow angiogenesis (development of new blood vessels) to bring in nutrients and oxygen
- malignant cells invade into the surrounding tissues, benign cells don’t
- every cancer mutation is different but all divide ++, stimulate blood vessels and get bigger and bigger. Eventually these cells will grow strong enough to metastasise throughout the body so it is VERY important to catch the cancer at an early stage before this happens.
these only occur in the white blood cells as they have nuclei with DNA, the red cells do not, they are divided into:
- LEUKAEMIA = liquid tumours. The bone marrow is taken up with making abnormal white cells and so does not make enough red cells, people become anaemic and feel weak and tired as they would if they had flu.
- LYMPHOMA = solid tumours. The lymph nodes all over the body normally swell up in response to infection and go down again when the infection is controlled. If they do NOT go down again in size then one should check for lymphoma.
B cell lymphoma
Burkitts lymphoma is a type seen in children rather than adults.
- it needs very strong chemotherapy and children often end up in hospital during treatment.
- treatment can be curative but some relapse and no further treatment is then possible.
- Suzanne’s lab is trying to find less toxic treatment drugs and find a treatment for those that relapse
- children’s cancers tend NOT to be related to smoking, UV or other environmental causes, so WHY do they get it ?
- Burkitts lymphoma is very common in African children. It is often seen as a large tumour in the jaw. 8,000 cases a year are seen in Africa and survival (due to lack of availability of treatments) can be as low as 10%. It is caused by the EB virus, which most people carry but a normal active immune system suppresses it. In Africa many people have malaria, which suppresses the immune system and so Burkitts is much commoner. It is also endemic in the West but MUCH rarer and “cocktails” of cytotoxic drugs are available which can cure 90% of it.
- studies are ongoing in African children to work out which drugs will best increase their survival rate and benefit them, whilst also telling us which drugs can be “left out” of the cocktails and still treat Western children effectively but less toxically.
- research is being done in mice which lack an immune system and can grow a solid lymphoma tumour on their backs. Biopsies can be taken from these and used to see which drugs will be most effective.
- relapsed tumours can be very aggressive and research is under way to work out why this is. What is different about the relapsed cells ? Maybe we are not killing off all the stem cells that we need to ? Suzanne and her team are looking at the resistant stem cells that are not killed by the usual chemo drugs. They are developing a new drug that is starting to be effective in killing these “rogue” stem cells. The ideal is to find a drug that prevents relapse with minimal side effects.
Colin has helped groups, teams and individuals to grow and develop in a career lasting more than 30 years.
His deep and continuous commitment to his development together with his heartfelt, authentic and eclectic approach is and has been fundamental in helping clients to make positive and lasting change.
Amongst other certifications Colin is a qualified coach, trained counsellor and a Reiki practitioner.
“Patient to Person – returning to the person in you”
Colin spoke about “people development”, he quoted a poem called “Love yourself” (anon) which basically “gives permission” for you to feel good about yourself and stop trying to do everything even when you feel really low and weak. Patient to Person is a 3 session programme and they are currently running the 6th of these programmes.
The purpose :-
I am ME, that’s ok, to be who I am.
In this moment I am ok – the programme is designed to help you feel like this.
The format :-
Sessions are 10.30 to 15.00 with 30mins for lunch
There are 4-6 weeks in between each of 3 sessions.
There is a maximum of 6 participants and 2 facilitators.
YOU have the choice of what you need and share.
The intimacy of small groups really helps.
Colin interviewed Tracy, who had been on programme 2 and 3.
Tracy gave us the background to her diagnosis and treatment for breast cancer, emphasising the excellent care and support she had had from the Woodlands Centre.
She took the view that she was going to “kick cancer in the butt” and went back to work ASAP but she felt very lonely and nobody understood what she had been through. She decided that she was happy to be a “guinea pig” for the Patient to Person programme.
When she arrived at the first session she sat in the car, stressed and anxious and very nearly didn’t go ahead with it. Then another member of the course came along and they walked in together. This gave her the support to carry on and it became something that she wanted and needed to do.
Tracy felt that her close personal relationships, such as with her husband, developed “cracks” at this time. It was a “lightbulb moment” for her to realise that it can be harder for those close to you to watch you going through this, than it is for yourself.
The P to P programme helped her realise that it is unrealistic to expect people who have not undergone cancer to give the needed support.
The BEST things about the programme :-
It is OK to feel rubbish – another day you might feel fantastic.
Grounding – you are given a stone to hold which brings you back to “where you are now” and what is really important now.
Mutual support from others on this programme really helps.
Susan Moore and Colin set up this programme together with the aim of coping with how the world changes and people change – things may not work out for you anymore – you need TIME OUT to look at these issues and sort out things for yourself.
“The line” or “living scale” – from 1 to 10
On a bad day you might be 1 or 2 on the scale, whereas on another day you might feel great and could say you were at 8 or 9.
This scale helped Tariq, a retired GP and now a facilitator for the course. He had to cope with chronic pain and a condition similar to MS. Colin interviewed him and we learnt how when he felt 3 to 4 on the scale before a family walking holiday he felt as if he was letting the family down and would be lagging behind, miserable and unable to admit it.
What did he do to improve things ? He went on a yoga holiday in Portugal where it was warm, the sciatica improved and there were lovely people, soon he felt more like 8 to 9 on the scale and was able to cope again.
Colin stated how he uses the scale to assess how people are at any given time so that he is not always pestering them with “Are you OK ?”
The 3 emotional systems of the brain:-
1. THREAT – eg chased by a tiger ! Equates to “I am a failure, not good enough” This threat needs to be minimised and quietened down.
2. DRIVE – what motivates you ? – hobbies, exercise, etc that give you a sense of achievement.
3. SOOTHING – things that bring a sense of care and looking after yourself – eg walking the dog, a hot bath.
Those things in DRIVE and SOOTHING can quiet down the THREAT system .
Get in touch with what works for you and can you get that feeling from another source if the original one doesn’t work any more. Use the Oxygen mask (in a plane with sudden loss of pressure) analogy – Looking after yourself FIRST is not selfish, it enables you to cope and look after and consider the people you care for.
Judith Cope studied pharmacy at the University of Bath and completed a MSc at the University of London.
She worked for nearly 40 years in NHS hospitals in London and was Chief Pharmacist at the Whittington and Great Ormond Street Hospitals. She is a Fellow of the Royal Pharmaceutical Society. In 2018 she retired and is now pursuing research interests at the University of London.
“How medicines work in the treatment of cancer and why side effects occur”
– The prime purpose of chemotherapy may be to reduce the size of a tumour prior to surgery.
– It can be used alone or in combination with surgery and/or radiotherapy.
- It may include cytotoxic drugs, hormones and immunotherapy.
- The challenges are to optimise timing, delivery and combination of treatments to maximise cancer cell eradication and minimise side effects
The cell cycle and tissue growth
- cytotoxic medicines target different parts of the cell cycle
- The rate of cell division varies considerably from one disease to another eg blood cancer (leukaemias) divide faster than solid tumours.
- The majority of common cancers increase in size slowly compared to sensitive normal tissues such as the bone marrow and the surface of the gut.
- Tumour growth is a balance of the rate of cell division and death. The percentage of actively dividing cells in a tumour is called the growth fraction.
- Cytotoxic drugs produce their effects by damaging the reproductive potential of ALL cells.
- They interfere with the synthesis of the precursors of DNA or interact with DNA itself to interfere with the process of cell division.
- So more rapidly growing tumours are more likely to respond as their growth fraction is higher.
- Equally, there are greater side effects on more rapidly growing normal cells, such as bone marrow, gut and skin.
- A given dose kills a PROPORTION of cells not a GIVEN number.
- Pulsed intermittent chemotherapy maximises tumour cell killing whilst allowing time for normal tissues to recover.
Phase specific agents
- These depend on the blockade of a particular reaction occurring in a single phase of the cell cycle.
- In vitro (laboratory) studies demonstrate that phase dependent drugs kill cells at lower doses but reach a plateau when given at a higher dose because they are only able to kill cells in a specific part of the cycle.
- Greater cell kill is achieved if they are given in multiple repeated fractions.
- They are most effective against tumours which have a large proportion of actively dividing cells.
Phase non-specific agents
- Non phase dependent drugs are equally toxic for both cycling cells and those in the “resting phase” therefore they are effective in large tumours where cell growth is low.
- They kill cells exponentially with increasing dose therefore they are dose dependent.
- A single dose has the same effect as repeated fractions totalling the same amount.
- Early studies used single agents, but remissions were short and relapse was associated with drug resistance.
- Combination chemotherapy is used to try and improve rate and duration of response by combining drugs with different mechanisms of action. This also helps prevent resistance developing.
- Most drug schedules have been decided by knowledge of efficacy, toxicity and practicality.
Chemotherapy regimen principles
- Use drugs that are known to be effective as single agents.
- Use drugs which work at different phases in the cell cycle.
- If possible use drugs with synergistic killing effects.
- Use the optimal dose and schedule for each individual agent.
- Use drugs with non-overlapping toxicity.
- Pulsed intermittent therapy should be used to allow the gut and the bone marrow to recover.
Short term side effects
- Extravasation – drug causing tissue damage around the site of injection into a vein.
- Rapidly dividing healthy, normal cells affected.
- Bone marrow – pool of stem cellar damaged by the cytotoxics. Store of mature stem cells lasts for 8-10days then low white blood cells and platelets can occur.
- Gut – mucositis of gut lining. Inflammation and ulceration.
- Hair – damage to the stem cells and it falls out.
- Nausea and vomiting – anticipatory, at the thought of the impending treatment, acute or delayed.
- Tumour lysis – caused by rapid destruction of cells particularly lymphoma and leukaemias (bulky tumours, lots of cells) High concentrations of cell products appear in the blood, eg increased uric acid, which leads to symptoms of gout, so patients are given a drug called allopurinol before treatment starts in order to prevent this.
- Thromboembolism – blood clots disperse around the body, can lead to a stroke.
Nausea and Vomiting
- Many triggers for this – cerebral cortex, local effect on the gut.
- Chemoreceptor trigger zone in the medulla oblongata (brain stem) responds to drugs circulating in the blood.
Drug categories re induction of nausea and vomiting:-
MILDLY EMETOGENIC – fluorouracil, etoposide, methotrexate, the vinca alkaloids, and abdominal radiotherapy.
MODERATELY EMETOGENIC – taxanes, doxorubicin hydrochloride, intermediate and low doses of cyclophosphamide, mitoxantrone, and high doses of methotrexate.
HIGHLY EMETOGENIC – cisplatin, dacarbazine, and high doses of cyclophosphamide.
Treatments for nausea :-
Ondansetron/granisetron – these have revolutionised the treatment of nausea side effects, people often needed to be hospitalised with nausea before these drugs were developed. Also metoclopramide and aprepitant.
Specific chemotoxicities :-
- cisplatin and carboplatin – ototoxicity (ear) and nephrotoxicity (kidney)
- vincristine – peripheral neuropathy (nerve degeneration)
- bleomycin and busulfan – pulmonary fibrosis (lung scarring)
- trastuzumab and doxorubicin – cardiotoxicity (heart) need to stick to a lifetime permitted amount.
- cyclophosphamide – haemorrhagic cystitis (bladder bleeding)
- methotrexate, 5-FU and 6-MP – myelosuppression (bone marrow depression)
Targeted treatment of side effects
- Folinic acid – this bypasses the effect of methotrexate on the intracellular processing of folic acid. Used for mucositis and bone marrow suppression (a “rescue” treatment)
- Mesna – intravenously- treats haemorrhagic cystitis caused by a breakdown product of ifosfamide and cyclophosphamide. Mesna reacts specifically with the metabolite in the urinary tract and prevents the cystitis.
- Rasburicase – is an enzyme that helps clear uric acid from the blood. When cells break down in tumour lysis, uric acid can be high.
- Granulocyte Colony Stimulating Factor (GCSF) – increases the production of white blood cells.
- Erythropoietin- increases red blood cells.
Long term toxicity
- Impaired reproduction – alkylating agents can cause reduced sperm production or ovarian failure.
- Organ damage – lungs, liver, heart.
- Secondary cancers – can be caused by some chemo medicines such as alkylating agents or etoposide.
- Cells in a solid tumour are not uniformly sensitive.
- As the tumour grows, greater variation occurs as mutation occurs.
- Patient’s own defence mechanisms and cytotoxic drugs kill selected groups of cells thus “encouraging” resistant cells to survive and multiply.
- Reduced blood supply – if the cancer is dying and the blood supply to it decreases then the drug will cease to work so well.
- Slow growing tumours – repair of DNA occurs before cell division.
- Site of action – if a cytotoxic drug can be administered (under radiological monitoring) directly into the tumour then side effects can be reduced.
- Blood brain “barrier” (this is not fully understood) – tumours in the brain are difficult to treat due to the inability to get the drug to the site of action. Drugs can be given directly into the cerebrospinal fluid (CSF), however this is not without risk.
- Formulation – drugs often given intravenously to ensure the full dose is received. This is especially true for children where it can be a real challenge to get the full dose in orally.
- Safety of staff, patients and carers when handling medicines. eg splitting tablets or capsules. Many medicines are not available in paediatric formulations.
- Hormones react with cell receptors and promote cell growth and division. So may help by lowering the concentration of the hormone. This can be done by reducing its production using drugs such as anastrazole or goserelin.
- Can also prevent the hormone from binding to the cell receptor or to cell DNA using drugs such as tamoxifen or flutamide.
Immunotherapy and the future
- Treatment vaccines – made from tumour associated antigens, custom made from patient’s own tumour or own dendritic (immune) cells.
- Monoclonal antibodies – targeted to specific proteins on cells. Some can help T cells to identify and bind to the cancer cells and destroy them.
- Immune checkpoint therapy – block the “normal” process of stopping T cells from killing cells. The patient’s own T cells are then “allowed” to kill cancer cells.
- Immune system modulators = cytokines (eg interferon, interleukins). These are produced by white blood cells and can enhance their response to cancer cells.
Both the following are approved for NHS use.
- CAR T cells – the patients own T cells are changed in the lab to make Chimaeric Antigen Receptor which is specific to proteins on the surface of the cancer cells.
- Tumour infiltrating T cells are taken from the patient and then grown in larger numbers in the lab and given back to the patient.
So there are quite a few promising things in the pipeline for the future.
It wasn’t all about education. There was time for tea, coffee & chats. And for lunch there was a smashing buffet. Not forgetting the usual fabulous HCCN raffle.
After the speaker sessions we had our intimate break out groups:
He researches and publishes widely. His well-read book, “Lifestyle and Cancer”, has just been updated and republished. He also publishes through two websites: http://www.cancernet.co.uk and https://www.keep-healthy.com
Reasons for maintaining a healthy gut, or the microbiome, is one of his key research priorities at present: with bacteria present in our mouth, skin, gut and vagina, we have more foreign DNA in our bodies than our own DNA. We are ‘hosts for aliens’ and they influence our health. Therefore, we should live in symbiosis with bacteria and seek to develop good gut health. There are good and bad bacteria – and the bacteria in our bodies are different to pathological bacteria such as typhoid.
He referenced the research of Stephan C Bischoff into gut health, and the importance of the gut/brain interaction, with underlying bowel issues and fewer systemic problems including cancer. He showed a model of the ‘leaky gut syndrome’ summarising the causes and consequences. In particular when undergoing chemotherapy treatment, good gut health is required to respond to treatment.
There is a lot of research underway into gut health – an exciting area. He moved on to talk about the role of polyphenols in promoting gut bacteria – important in diet and to aid response to cancer treatment. Gut health worsens through eating processed sugars (including sugar substitutes); alcohol; fatty foods; smoking; stress and obesity. Eggs can promote inflammation but the choline in eggs is an important food. Gut health can be improved through eating a macrobiotic diet; a Mediterranean diet; eating foods rich in bacteria; exercise and using pre-biotics.
On supplements, he stated that there is no evidence that probiotics are beneficial, but they are useful in some situations when gut health has been compromised. His recommendations can be accessed on https://www.keep-healthy.com
Professor Thomas – one of HCCN’s patrons – is very open to responding to questions. Email him at firstname.lastname@example.org
A few words about men’s club
A weekly meeting for any man affected by cancer in any way, personally or indirectly.
Words from the men’s mouths … Friendly. Understanding. Happy chappies. Empathetic. Non judgemental.
Tea, coffee, shortbread and plenty of laughs. Friendship groups that have progressed outside of the meeting. Meeting up becomes an essential part of the week and for those that want to talk there is always a sensitive ear.
Anne is an HCCN patient who has been travelling abroad with complex health issues. She talked about tips for holidaying to avoid problems.
Godmanchester Community Timebank Coordinator, enthusiastic stroller and Papercraft Designer.
Susan organises twice monthly walks for members of her local community. She also organises a Saturday Strollers group for HCCN. She teaches papercraft classes and workshops for everyone from 4 to 99 years of age.
She spoke a little about the walking group and the benefit of being creative. She demonstrated a craft project so that participants could assemble a simple project themselves and take it home afterwards.
Darren spoke to us about ways to keep active, the programmes they run are especially aimed at cancer patients and in particular some of their new and aquatic exercises.
The very busy day concluded with a lovely uplifting performance from The Aragon Choir from Buckden who sang us on our way home!
Click the video below
Date for your diary
Please put in your diaries the date of our NEXT CONFERENCE on 28th April 2020.
It will be at the Racecourse as usual and we hope to have speakers on :-
- Accepting help with a diagnosis of cancer – gender differences.
- Digital tools to help people with oesophageal and other cancers.
- Radiology and it’s involvement with diagnosis and treatment of cancer.
- Proton beam therapy
- “5K your way” and the “Move” charity
SEE YOU THERE!
Best wishes from Gill and her team of event volunteers.