Wigwam Cancer Support Groups and Forums

The wonderful Ticking off Breast Cancer blog posted this blog of mine a month or so ago - I've copied it below. The Breast Cancer blog is by Sara Liyanage who published her story in a book with the same name as her blog. A big thank you to Sara - before sharing the blog below about Wigwam I wanted to add my preferred definition of Integrative Medicine is that it 'combines the best of conventional, lifestyle and complementary approaches to improve health and wellbeing'. I guess the word 'alternative' sometimes conjures up less well researched approaches - see my discussion on that here. Anyhow now to my blog:

This is a guest blog from Philip Booth, the coordinator of Wigwam – part of the Yes to Life cancer support community. Wigwam is a cancer support group with a difference. It is a community of people living with cancer coming together to explore and share information and experiences with the aim of empowering themselves to gain control over their lives. Wigwam is a place for people to meet locally or online. Wigwam is a place of safety and care, which is flexible and supportive, to meet others sharing similar issues and to learn about Integrative Medicine. (For those of you who don’t know what integrative medicine is, it is a form of medical therapy that combines practices and treatments from alternative medicine (such as exercise and nutrition) with conventional medicine (such as chemotherapy and radiotherapy).

Overwhelmed. Terrified. Bewildered. Just some of the emotions I felt following my prostate cancer diagnosis over three years ago. I didn’t know what to do. This was compounded by a number of different treatment options. What was the best way forward?

Just after the diagnosis, I asked my oncologist about diet and exercise. I was told that I was pretty fit and to keep doing what I was doing. I knew, that while this advice was well-meaning, it did not fit with what I knew; there is so much we can all do to improve our health and wellbeing.

So I set about learning. To my surprise I came across lots of studies that showed significant benefits. Exercise got lots of mentions – no doubt blog readers here will know of studies like the one in 2007 of 1,490 women with early stage breast cancer. They found that those who exercised, like walking for 30 minutes each day and ate more than five servings of vegetables and fruit per day, had a whopping half the recurrence rate after nine years compared to those who didn’t (i).

Taking an integrative approach

It was some months after learning about exercise that I came across Yes to Life – and discovered they are the UK’s leading charity seeking to improve access for people with cancer to Integrative Medicine. They provide support, information and financial assistance to those with cancer seeking to pursue approaches that are currently only available as private healthcare.

You may well have come across them recently, as they have just put on two great online events with forty plus global experts; the ‘Your Life and Cancer’ weekends (ii) – and we were delighted to have had Ticking off Breast Cancer as one of the many supporters. It was a wonderful coming together and sharing of evidence-informed healthcare to achieve optimal health and wellbeing.

I have so appreciated that the charity is all about combining the best of conventional, lifestyle and complementary approaches. This made so much sense to me and I’ve been on a learning path ever since that has given me a much greater understanding of my cancer and what is possible.  Indeed, the more I have read, the more the UK’s focus almost exclusively on surgery, radiotherapy and chemo seems such huge missed opportunity.

Around the world other countries have embraced the research into cancer that goes beyond our conventional approach. In China, for example, if you aren’t taking herbs as part of your cancer treatment then that is seen as negligent, while in parts of Europe, mistletoe injections and hyperthermia are recognised by many medical doctors.

So where can we talk and learn safely?

There are not many places where it is possible to discuss other options. When I spoke to Yes to Life nearly three years ago, I found out they had plans for developing ‘Wigwam’ cancer support groups that focused on an integrative approach.

Within a few weeks, three of us came together in Stroud. We’ve not looked back, and ten of us meet each month to share where we are at and explore different approaches together. It is not about giving advice, but has been a wonderful, confidential place of support to explore challenges, opportunities and share information.

Why call it Wigwam?

Well the idea came from Richard Mayon-White, who had cancer in 2016, he said “a wigwam provides shelter that is flexible, with an informal style and not fixed in any one place. The way that the poles of a wigwam lean inwards to support each other illustrates how a successful group can offer care and help to its members”.

One Wigwam member said they hadn’t realised how lonely they had been on their cancer journey, while another said; “It was such a relief to find an open and supportive group, totally on the same wavelength when it comes to the challenges faced by those of us looking for a more proactive and personalised approach to healing ourselves”.

Eighteen months on and I joined the Yes to Life team to help the charity establish more groups. Our first online Wigwam group has just been meeting and growing. Feedback is very positive and we are planning more. If you are interested you can complete the ‘Get Involved’ page on our website and we will be in touch.

Free Forums and Webinars

In addition to the support groups we also now host live expert-led online forums every other week, the podcasts of which, are then available online. Topics coming up include sugar, toxins, dance, appetite and an integrative approach. We also have a weekly mindfulness drop in and more planned. See more at: https://www.wigwam.org.uk/events-and-sessions

Philip Booth – Wigwam Coordinator for Yes to Life

Philip has a background in Social Work, managing care services, local politics as a councillor and for the last eight years has worked for a charity helping residents in Gloucestershire build more welcoming communities. His own journey with prostate cancer has led to a passion for helping people come together to support each other in more proactive, personalised approaches to health and wellbeing.

For more information please take a look at the websites of Wigwam and Yes to Life . In addition, Wigwam is on Facebook: wigwamsupport and Philip blogs occasionally about his prostate cancer journey.

Notes

(i) Greater Survival After Breast Cancer in Physically Active Women With High Vegetable-Fruit Intake Regardless of Obesity: http://ascopubs.org/doi/10.1200/JCO.2006.08.6819

(ii) https://www.yourlifeandcancer.com

Please note that I, as Ticking Off Breast Cancer, do not accept responsibility for the content of the guest blogs. The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.

True self-care

We often come to self-care when we are exhausted or get a diagnosis - and certainly it has been that way for me at times in my life. A while back I had thought to write a blog building on what I've written before about self care - see here blog re getting the basics right - the blog I imagined would have mentioned all those things that can help some folks like cold showers, fasting, saunas, good food and so much more. It was going to be about doing some of the things we wouldn't choose to do, may not be easy to do - and how alcohol, procrastination and other stuff can get in the way.

Then I came across this quote by writer and poet, Brianna Wiest; "True self-care is not salt baths and chocolate cake, it is making the choice to build a life you don’t need to regularly escape from.”

And that got me thinking.....no doubt Covid-19 has helped...when holidays, visits to friends and more are not an option...I can't escape in the ways that are familiar.....this has perhaps been a gift (and a challenge) to help me think about what I need and want to do....which goals are key and which ones to drop.

Cold shower

This has been compounded some weeks ago when I faced voluntary redundancy in one of the two charities for whom I work....I've loved this job and been there over eight years. Sadly the new jobs they offered, subject to interviews, did not make my heart sing. I agonised for weeks before saying no to the new jobs. I am fortunate to have other options but all this raises great questions about how we look after ourselves and purpose.

Indeed having strong reasons to live is one of the key factors that Kelly Turners' research identified as being key in radical remissions. So how can we become the person we know we want and are meant to be? Where does self care fit with all of this? Oh my perhaps it is easier to go and watch a film!

As Brianna says: "someone who knows that salt baths and chocolate cake are ways to enjoy life – not escape from it".

Luzita Hill dies; ‘patients not criminals’ #cannabis campaigner

I was so very sorry to hear that Luzita Hill died on Saturday. It has been 8 years since her breast cancer diagnosis and she was told she wouldn’t live beyond 3rd June 2017. I met her at Trew Fields in 2018 and 2019 and her wonderful energy totally inspired me - she shared with me some of her campaigning work for the use of cannabis in cancer treatment. Her warmth and passion shone through and I loved her down to earth, no-nonsense approach.

Luzita has been an extraordinary, fearless campaigner who has been at the forefront of campaigns for Medical Cannabis. She chose the title of #cancercriminal because she was forced to break the law to treat her cancer. A lovely post on her Facebook page said: "She fought the prejudice, fear and misinformation. Squarely putting a mirror up to the hypocrisy of politicians who make money from growing it commercially while at the same time denying it to their own people so desperately in need of its medicine. When she stood up to speak, people listened, they dare not because she wasn’t going to back down". 

Luzita converted her skeptical integrative health team, including GP, to buying into her belief that cannabis has been the key to her on-going vibrancy. Even last month she was appearing in videos as a cannabis patient advocate talking about treating symptoms: https://youtu.be/Yznfn_8qZV8

Indeed once you start looking into this whole area there are a host of articles about cannabis and its use in treatment of cancer and symptom management (i) - including lots in PubMed. More research is needed as we still need to learn more about its effectiveness, dose, side-effects and more but there is more than enough evidence out there to make it readily available. This blog post is not for a discussion on that now - am sure I will do a post in the future. 

As part of her campaigning, Luzita spoke in Parliament with the United Patients Alliance, a Not For Profit organisation run by chronically ill patient volunteers, talking about cannabis. See her speech here: https://youtu.be/Vz6kUEqhb_0

Luzita fully supported the campaign for the trial launched in 2018 to target 20,000 patients with cannabis. Indeed she was signed up to participate and I’m told she became legal a few weeks before dying with her first cannabis description for pain relief. However disappointingly the trial has got off to a rocky start with only 12 prescriptions being made in the first year (ii) and few, if any after that up to this summer(iii). It seems despite growing evidence of how supportive medical cannabis can be, there is still a reluctance to prescribe in the NHS. Luzita's work is changing that - many of us need to continue her work.

Luzita also lived to see the introduction of the Cancard on 30th November; patients with a multitude of health conditions will have the right to apply for Cancard (iv). Journalist Roland Sebestyen, writes: "The card, which is backed by police commissioners, communicates to police officers that a person should not be arrested for consuming self-sourced ‘illegal’ cannabis as a medicine. Up to 1.1 million people could be eligible for a Cancard by 2021, removing the fear of arrest and prosecution for possession. All patients with a health condition, that is currently being privately prescribed for at a high cost, will be eligible for the card”. 

 

In terms of Cancer and this card, the conditions that are included are: "Anxiety, Chemotherapy-induced nausea, Cancer-related appetite loss, Depression, Palliative care." I’ve heard very little about this card so would love to hear how this is working?

 
Here’s another film with Luzita sharing how she got interested in cannabis: https://youtu.be/zoAbTPISpt0

Thoughts with her husband, Terry and her family and close friends. Thank you Luzita for all you did - know we will continue the work.

 

Notes

 

(i) https://www.canceractive.com/article/can-cannabis-cure-cancer

See also Tedx talk and one story about its use with pain: https://youtu.be/jyAGlb8PMRc 

(ii) https://www.theguardian.com/society/2019/nov/03/medical-cannabis-patients-refused-drug-nhs-legalised 

(iii) https://www.theguardian.com/politics/2020/jul/01/anger-at-nhs-failure-to-prescribe-cannabis-oil-medicines 

(iv) See more at:
https://canex.co.uk/over-one-million-patients-could-avoid-arrest-for-cannabis-with-cancard/

https://hightimes.com/news/cancard-provide-cannabis-med-card-u-k-patients/

https://cancard.co.uk/

European Prostate Cancer Awareness Day calls for action; what did I learn?

The European Prostate Cancer Awareness Day (EPAD) aims to raise awareness and enhance knowledge of prostate cancer. Oncology specialists, patient advocates, politicians and policymakers gathered for EPAD20 online and in Brussels on 17 November 2020. I missed the live event but have been catching up with their videos/presentations. Some of the findings that I found interesting are below - scribbled notes as I tuned into these talks - big thanks to EPAD for letting people living with cancer join.

Listen in at: https://epad.uroweb.org/programme/recording-epad20/

Things have improved significantly since PSA was introduced

 

However 1 in 7 men in Europe will develop prostate cancer before they are 85.  Figures show in 2018 107,000 died from prostate cancer in Europe. 

 

Prostate cancer was said not to be a killing disease: “You will die with, not from prostate cancer”. Yet this is plainly not so true. It has been suggested that PSA testing was overused and led to over diagnosis and over treatment. Instead people with early diagnosis should have been offered Active Surveillance. This over diagnosis and treatment led to the anti-PSA propaganda - yes it is not a great measure but it has still helped with early detection that has led to less mortality. 

 

When there was less PSA testing it appears prostate cancer deaths increased. Prof. Hein Van Poppel in setting the scene to the conference challenged that much less was being done for prostate cancer than other cancers and asked why are we are letting this happen.

Prof. Monique J Roobol in her talk started with a quote from 1993 in the BMJ wrote: "About 50-60% of all cases of prostate cancer in the European Community present with obvious metastases or are locally too advanced for potentially curative management. Of those cancers that seem to be limited to the prostate clinically, 25-35% will have lymph node metastases. Of the remainder, another 25-35% will be too advanced for curative treatment and will turn out to be unresectable if surgery is attempted.” 

 

She went on to share the results of clinical trails saying that things "will hardly be different in 2021 and onwards if we do not act.”  She concluded:

• Data from pre-PSA era show that PCa is a disease often related to a lot of suffering over a considerable period
• 2 out of 3 men diagnosed with PCa died of their disease

We now know that: 

• Organized screening with the use of the PSA test reduces suffering and dying from PCa
• Potential harms ( unnecessary testing /over diagnosis and over treatment) can be largely avoided

Indeed the talks repeatedly concluded that early detection should be offered and can save lives. Are we doing enough? It seems not at the moment. As the Prof. Hein Van Poppel said in answer to a question, mortality is increasing in the UK due to the "propaganda against PSA testing" and GPs need to know that and we need to act. He goes onto "say early detection is likely to be the way out of it”.

When asked about prevention Monique J Roobol said it was research was still underway and that it was hard to know what can be done to prevent prostate cancer but we are aware of risk factors - mainly related to diet - particularly red meat being not good and tomatoes being good.

EUPROMS study - some surprises re quality of life after treatment

Key findings from nearly 3,000 responses in this study were highlighted by Mr. André Deschamps in his talk include:

Prostate Cancer is not an old mans disease; average age at diagnosis is 64. Nearly 30% are diagnosed before 60 and 76% before 70. 

 

Anxious and depressed; 42% of men who have been treated for prostate cancer are anxious or depressed to some extent at the time of the survey - with 15% extremely, severely or moderately impacted.

Sexual function; there was slightly more impact with radiotherapy than radical prostatectomy - both treatments impacted significantly but this research flies contrary previous thoughts that prostatectomy had worse outcomes re sexual function. Of huge concern was the overall some 28% have a big problem and 22% a moderate problem ie 50%!

Continence: prostatectomy was worse than radiotherapy and its seems after treatment (I think they mean any of the standard treatments) a whopping 37% of men use one or more incontinence pads every day.

The conclusion is that early detection is key and that active surveillance should be considered as the first treatment in order to ensure the best quality of life.

The Awareness Day also heard from November and their campaigns to raise awareness about early detection - see more re UK branch at: https://uk.movember.com/

Black Women Rising: new magazine

I recently got my copy of the wonderful 'Black Women Rising’ magazine - another opportunity by teh inspiring Leanne Pero and the gang at Black Women Rising to empower women of colour as they navigate their cancer journeys. There are also plans already under way for Black Men Rising.

The mission at Black Women Rising is to educate, inspire and bring opportunities for women from the BAME community, to connect with one another and share their stories, without fear or shame. As their website says; “As well as..generic injustices, the unhelpful myths and taboos surrounding cancer within the BAME community had ultimately stopped people from speaking out about their ordeals, leading to a lack of awareness and education within BAME households around cancer, its signs and symptoms. This ultimately led to the devastating outcomes of late stage diagnoses and higher mortality rates in some cancers than their white counterparts.”

Check out their podcasts

Black Women Rising have support groups and podcasts which I have mentioned in a previous blog - see here (i). This magazine will be another way to reach out. It covers loads with a look at the project, many voices from folk living with cancer, signs and symptoms, what to say to loved ones, hair, beauty, sex, gratitude, menopause, LGBTQI, genetics and so much more.

Options can be overwhelming

The magazine touches on lifestyle with Toral Shah talking nutrition and a section on exercise with Jonelle Lewis - from an integrative health perspective there is lots more evidence that could have been included around other stuff we can do to build our health. However I see one of the biggest challenges being about how not to  overwhelm people with too much info. 

 

In the recent ‘Your Life and Cancer’ online event with 40 plus global experts it was more than clear how much evidence is out there. Some options cost loads while others are almost no cost. But how do you choose? And how do you find what is right for you? 

The magazine focusing on nutrition and exercise is clearly a great place to start. However as I noted in the previous blog (mentioned above) (i), complementary medicine like conventional treatment does also not seem to be able to serve the BAME community in terms of people living with cancer.

That leads me to one of the sections in the magazine that I particularly liked - looking at what we can do as a community to help banish stigma. 

 

The graphic opposite covers some of the ways which are already underway. I know we can all do more. This magazine is certainly a great start - could they be available in oncology waiting rooms? How else can we help reach out?

 
See more and order your copy of the magazine at: https://www.blackwomenrisinguk.org/

 

Notes

 

(i) See my blog with links to Black Women Rising podcasts, support groups and a film of Leanne talking at Trew Fields with the equally inspiring late Saima Thompson:  https://myunexpectedguide.blogspot.com/2020/07/yes-to-life-stands-in-solidarity-with.html

(ii) https://www.yourlifeandcancer.com/

Raising awareness; BBC’s ‘Prostrate’ radio series

In a recent blog I noted a series of funny, sensitive videos that tackles some of the silence around black America’s prostate cancer crisis (i). Well little did I know the BBC had a series of radio shows trying to do a bit of the same with Martin Jameson’s comedy drama.

Last month they released the series - starring Stephen Tompkinson and Gary Wilmot - the BBC describes them "as buddies grappling the country’s most common and least sexy male cancer”. What?!! The ‘least sexy male cancer’?? What a load of tosh! Are any cancers sexy? 

Anyhow it is great that this series is raising awareness - and particularly about the poorer survival rates for Black people. Although disappointing it doesn’t cover what else we can be doing to support our health and wellbeing. The episodes stay very clearly with conventional treatment despite the huge and growing evidence that lifestyle and complimentary can play a significant role in health. The show also appears slightly misleading at one point with mention of testosterone being the thing that helps prostate cancer grow. Well it is nothing like as simple as that - see my blog here looking at that issue a bit more (ii).

The website explains the title of the show; "Prostrate - because that's what everyone calls it and that's how it renders you - is a rebel yell of solidarity to every man (and supportive woman) living with the disease. The enemy is silence - the weapons are friendship and laughter”. Here’s the exchange between the two characters in episode one:

"Prostate not prostrate.”

“No its definitely prostrate.”

“Prostrate is when you are lying on the ground, helpless in complete supplication and submission.”

“And your point is?”

“Yeah, fair enough."

This is more of the description from the website:

"Tony – job going nowhere, marriage collapsed, son barely speaking to him - thinks life couldn’t get any worse. Until the nimble-fingered consultant tells him he has prostate cancer. Head spinning, Tony collides with Lenny’s car in the urology car park. Lenny has been in hand-to-gland combat with the disease for ten years but still lives life to the cantankerous max. Over five episodes, Lenny drags Tony out of the slough of despondency. Together they kick Tony's cancer into touch, and his life into vibrant new shape. 

"47,000 men are diagnosed every year, with UK deaths from prostate cancer now exceeding those from breast cancer. Writer Martin Jameson was diagnosed in 2013 and endured lengthy treatment in 2014, despite which he discovered a well of humour and life-affirming camaraderie with other prostate veterans whose experiences get to the nub of what it is to be a middle-aged man". 

Listen to it for at least the next year at:

https://www.bbc.co.uk/programmes/m000mbjb

 

Notes:

(i) https://myunexpectedguide.blogspot.com/2020/09/daddys-boys-play-tackling-prostate.html

(ii) https://myunexpectedguide.blogspot.com/2019/04/a-look-at-hormone-treatment.html 

Genetics; what we need to know before chemotherapy or radiotherapy?

I first published this blog on the Yes to Life website here following a great Forum put on by Yes to Life's Wigwam Cancer Support Group - in that we heard Dr Peter H Kay talk about genetics and more (i). It does seem extraordinary that this issue is not being more considered by the NHS? I would hugely welcome any feedback from others about their experiences? Is this something patient groups should be campaigning on?

Genetics is more than complicated to get my head around. Some regular blog readers might have seen my earlier blogs looking at the role of p53 and my own cancer here and the key role of epigenetics here. Well in thsi blog Peter kindly cast an eye over it before I published so hopefully this will make sense to folks.

What we need to know before chemotherapy or radiotherapy?

Dr Kay on Zoom

I recently joined one of the Wigwam cancer support group forums (i) with Dr Peter H Kay who introduced us to the idea that our genetic profile can significantly influence whether chemotherapy or radiotherapy will be helpful or harmful. For example studies into chemotherapy have shown that about 25% of patients die or have a shortened life because of this form of treatment.

The information that Peter shared in the forum made it one of the most important talks I’ve heard about conventional treatment. It is complicated. The language alone is enough to give me a headache. Yet as I grappled with the science it became increasingly clear that this information should be in the hands of more people. Indeed why are the NHS not routinely testing in the way Peter suggests?

In the talk Peter, who is an Australian trained Molecular Pathologist, Immunopathologist and Cancer Specialist, discussed the significance of some of the more important genetic aspects to be considered to optimise the effectiveness of chemotherapy. Considerations include reference to the genes that encode the proteins p53 and CYP2D6 as well as a gene called MDR1. The gene MDR1 encodes a protein that causes multidrug resistance. He also spoke briefly about the importance of oxygen in radiotherapy. I will introduce them in more detail below.

TP53

The gene TP53 encodes a protein called p53. The protein p53 plays a very important role in many aspects of development, progression and treatment of cancer. It is a type of tumour suppressor protein that inhibits the development of tumours. It has been called “the guardian of the genome,” and when inactivated, it permits the growth and spread of cancer. Around half of all cancer cells have developed a mutant form of the TP53 gene.

Broadly speaking it seems there are two types of mutations; germline and somatic. Germline mutations are heritable. These mutations are present from birth and affect every cell in the body. Genetic tests are now available and folks can check for several germline mutations that increase cancer risk, such as mutated BRCA1 and 2 genes. Germline mutations in the TP53 gene are not common. Indeed it should be noted that less than around 7% of all cancers are due to germline gene mutations. Most cancers are associated with a somatic mutation.

Somatic mutations are acquired. They are not present from birth but come about from the process of a cell becoming a cancer cell. In contrast to germline mutations there are a wide range of cancers that are associated with somatic mutations in the TP53 gene including most lung cancers and 20-40% of breast cancers. Somatic mutations are only present in cancer cells and not in other cells in the body.

Damage to the TP53 gene can be due to cancer-causing substances in the environment (carcinogens) such as cigarettes but often the toxin leading to the mutation is unknown. Mutations are also caused by exposure to radiation and ultraviolet light and viruses. Somatic mutations also occur when DNA repair genes are faulty.

Reading lots to try and understand!

Recent studies have shown that the presence of mutant forms of TP53 may reduce the benefits of chemotherapy and radiotherapy.

DNA sequencing tests can easily be done on DNA samples isolated from a blood sample or a cheek swab to identify germline mutations. Somatic mutations however can only be identified by sequencing DNA or RNA isolated from the cancer cells themselves, usually requiring a biopsy.

If a cancer is found to have a somatic TP53 mutation, other forms of treatment, other than chemotherapy or radiotherapy, may be more suitable

Update 2.10.23: See CancerActive article: https://www.canceractive.com/article/tp53-p53%20and%20cancer

CYP2D6

Many chemotherapeutic drugs are administered in an inactive form called a pro-drug. When pro-drugs are absorbed into the bloodstream, they need to be activated by certain enzymes within the cytochrome P450 enzyme system   before they can be of help. CYP2D6 is a key pro-drug activating enzyme that is encoded by the CYP2D6 gene mainly in the liver. It plays a key role in the metabolism and elimination of the drugs and toxins we ingest.

We inherit different functional forms of cytochrome P450 family members such as CYP2D6. Some people inherit CYP2D6 enzymes that work very poorly. These people may not activate pro-drugs adequately for drugs to be effective. Others inherit CYP2D6 enzymes that are highly active. These people may activate pro-drugs too quickly leading to an overdose effect. Most drugs are designed to work best in those who have inherited a CYP2D6 enzyme with intermediate activity.

An example that is currently being researched is Tamoxifen. This treatment can reduce a woman’s risk of developing a second primary breast cancer, but there is substantial variability in response to treatment. Some of this may be attributed to germline genetic variation because Tamoxifen is a pro-drug activated by CYP2D6.

MDR1

Many cancer patients develop resistance to the very chemotherapy drugs designed to kill their cancer. Even more problematic, it seems that once a patient’s tumour is resistant to one type of chemotherapy, it is much more likely to be resistant to other chemotherapies as well. This is known as multidrug resistance. Once patients reach this point, the prognosis is often poor.

Several genes are recognized as playing a role in multidrug resistance in cancer; key amongst these is the multidrug resistance-1 gene (MDR1). MDR1 inhibitor drugs have sadly not been successful in clinical trials with cancer and it is now thought the reason maybe because it impacts on our natural immune responses (ii).

Development of multidrug resistance by cancer cells is the greatest obstacle against efficacy of chemotherapy. Multidrug resistance is often referred to as the “Oncologist’s nightmare”. Knowing the extent of MDR1 gene expression in cancer cells would be useful in determining further chemotherapy or not. If multidrug resistance is present in cancer cells, then other treatment options such as immune based therapies should be considered.

Tests for the presence of multidrug resistance require a sample of the cancer cells usually by way of a biopsy.

See my blog & film re hyperbaric oxygen here

Oxygen and radiotherapy

Radiotherapy is about using shaped beams of high radiation energy, light or particles to induce cell death in tumour cells, whilst sparing healthy cells; up to 60% of cancer patients will receive radiotherapy in the course of treatment.

Yet we don’t get to hear about oxygen and the key role it plays in the replication of cells and growth of tumours. Research has shown that oxygen deficient tumours create their own networks of blood vessels to sustain themselves and develop their capacity to metastasis (ie spread the cancer to other parts of the body).

Oxygen also plays a key role in radiotherapy; a well oxygenated tumour responds up to three times better than those with less oxygen. Knowing this opens up huge possibilities for cancer treatment, one very promising example being researched is to have hyperbaric oxygen before having radiotherapy. There seem to be similar benefits from this approach with chemotherapy.

Good news story

Recently work is being done around the widely used fluoropyrimidine chemotherapy drugs such as 5-fluorouracil (5-FU). This powerful class of drugs is proving useful in the treatment of many cancers.

The fluoropyrimidine class of drugs are usually administered intravenously in an active form.  They are metabolised by the enzyme dihydropyrimidine dehydrogenase (DPD) enzyme encoded by the DPYD gene. The problem is that around 5% of people have a genetic deficiency of DPD and less than 0.1% of people have a complete deficiency. This means they are unable to break down the chemotherapy agents and in a small number of cases it will lead to rapid life threatening toxicity.

The good news is that some NHS hospitals, like Manchester, have started to save lives by screening for the DPYD genotype prior to fluoropyrimidine treatment (iii). When will they also start to look at other genetic tests?

Where can we get tests done?

In view of the benefits of genetic testing for germline and somatic cell mutations, it is possible that oncologists, clinicians and general practitioners will have access to helpful genetic tests locally within the NHS system (iv). You should seek these tests from them.

Other approaches

In recent times, new immune based treatments like CAR-T cell therapy and immune checkpoint therapy and the use of monoclonal antibodies have been developed by harnessing elements of the immune system. These immune based treatments avoid many of the problems associated with chemotherapy and radiotherapy. Let us hope these and other treatments will provide more answers and ways forward.

It is also worth mentioning epigenetics. We may not be able to change our genetics but we are not a victim of them. What we can change is the expression of our genes – and that’s what epigenetics is about. Some of the epigenetic changes may have a serious impact like cancer, but it is clear that these can still be modified by lifestyle choices and environmental influence.

Understanding our genetics can play a key role in choosing conventional treatments like radiotherapy and chemotherapy – but also adding support like lifestyle and complementary approaches. It would be great to have access to these important genetic tests on the NHS. Having access to this information could have a significant impact on the quality of lives; avoiding for example, harsh chemotherapy treatments that have no benefits.

Course on offer

Peter has prepared a course based on past and present advances to provide a wide range of genetic, biochemical, metabolic and immunological information. It is aimed at patients, practitioners and students of the health sciences to enable them to understand many aspects of the development, progression and treatment of cancer. The normal charge for the course is £200, however, if interested, members of Wigwam support groups can take the course for £100. For details and further information contact Dr Peter H Kay at: peterhkay@gmail.com

Notes

Philip would like to note his thanks to Dr Peter H Kay for the talk and acknowledge that this blog is based on his understanding gained from Dr Kay. Philip also notes that of course people should consult their cancer specialist before making any decision that could affect their treatment.

(i) For Wigwam Forums see: https://www.wigwam.org.uk/forums-and-webinars

For a video of Peter’s Forum with Wigwam register on the Wigwam website in top right hand corner to get access to the talk:

https://www.wigwam.org.uk/resources

You can also hear Peter in a Yes to Life Radio Show: https://www.ukhealthradio.com/blog/episode/critical-information-molecular-pathologist-and-cancer-specialist-dr-peter-kay-wants-people-considering-chemotherapy-to-be-aware-of-genetic-tests-that-could-save-their-lives/

(ii) https://www.sciencedaily.com/releases/2020/04/200417114440.htm

and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915407/

(iii) https://mft.nhs.uk/dpyd/

(iv) Genelex in USA offer CYP2D6 and DPYD typing. See  https://www.genelex.com/test-menu/