Supplement and Therapy database and info

I've mentioned this in the past but it is a growing very useful resource from Cancer Choices (formerly Beyond Conventional Cancer Therapies) that looks at complimentary treatments and rates them. It is well worth checking them out to see if they have researched a particular treatment. Each month they seem to add more. Check it out at: https://cancerchoices.org/resources/reviews-of-complementary-therapies/

And if looking for a practitioner or more info on a therapy check out Yes to Life's Directory at: https://yestolife.org.uk/life-directory/ 

By clicking on the Yes to Life heading 'Resources' you can also find 10 years worth of weekly radio shows plus a number of podcasts looking at particular therapies.

In the past I've done blogs looking at websites, books and more....rereading now they could do with an update but this blog looking at 'Best websites for cancer support' here.

Campaign for oncology drugs for poorer countries

I've mentioned previously Inspire2Live and their call to improve access to oncology medicines. Today we launch a new campaign to improve access to essential drugs by poorer countries Below I attach the press release which includes the inspiring Barbara Moss sharing her own experiences in the UK - I was fortunate to meet her in Gloucester a couple of years ago.

Inspire2Live establishes an international initiative to provide access to essential cancer drugs for Lower Middle Income Countries (LMICs) Inspire2Live (I2L), the international patient advocacy organisation, is leading an initiative, together with five of the world’s top cancer scientists as advisers, to enable patients in poorer countries to receive essential and innovative cancer drugs that they cannot currently access. This movement is gaining the interest and help of several existing international organisations who know how to deliver this. Commonly, LMIC patients are diagnosed at a late stage of their disease when their cancer is most aggressive and with no pain relief available.

Professor Ifeoma Okoye, from Nigeria, said: “Every day, I watch patients walk into our cancer centres with more fear of the cost than of the disease. The burden of out-of-pocket expenses for chemotherapy, imaging, and pain relief crushes families and robs them of dignity. The effort by Inspire2Live to democratize access to essential oncology medicines is a necessary disruption to a broken system. We must move from global empathy to equitable action. Affordable cancer drugs are not charity—they are a human right.”

At I2L, we have the support of 30 members from LMIC countries1. We visit, meet, and witness the endless struggle of people with just a few hospitals trying to cover the needs of an entire country and no access to essential cancer medicines. I2L feels compelled to act to address this global inequality. Barbara Moss from Worcester UK, a member of I2L, reflects on her experience in 2006, diagnosed with Stage IV colon cancer and given a prognosis of three months: “I was refused new treatments through the NHS because they were expensive. If my family had not
paid for the biological drug, I would certainly have died. The drug shrank my tumours sufficiently to allow surgical resection. Eighteen years on, I am so grateful to be here for my family. I want others to have the same chance that I had.”

The World Health Organisation (WHO) updates its essential medicines list biennially. There are 83 essential medicines for cancer, of which 13 are patented. Cancer drugs are generally not available in Africa, but could be made available, with no huge financial loss to the pharmaceutical industry, as was done before for HIV medicines. I2L believes that countries could be allowed to manufacture generics, even though drugs are still under patent, keeping within stringent safety regulations.

Pharmaceutical companies have to cover costs of research and failures. However, after distribution is complete in high-income countries, costs for excess production could be reduced by 90% for LMICs, following a similar process as for HIV treatment. Inspire2Live has consulted with itsinternational membership and found that this can be done. Not only will patients benefit, so will industry. Firstly, they are rewarded by scoring higher on the indexes of Corporate Social Responsibility without losing revenue, as they are currently not selling drugs to LMICs. Their 1additional expense is for registration, an insignificant cost. Of real significance, they would deliver the true value of their science: to drive innovation and save lives globally.

We believe that it is inhumane to allow people to suffer and die when there is a known way of
preventing this. We can save lives.

The I2L initiative has the powerful backing of:
• Prof. Mark Lawler, Professor of Digital Health, Queen’s University Belfast.
• Prof. Richard Sullivan, Director, Institute for Cancer Policy and Co-Director, Centre for Conflict
and Health Research, King’s College London, U.K.
• Prof. Carin Uyl-de-Groot, Professor of Health Technology Assessment, Erasmus University
Rotterdam, The Netherlands
• Dr. Wilbert Bannenberg, Founder and Chair, Pharmaceutical Accountability Foundation.
• Prof. Emeritus Ifeoma J. Okoye, Nigeria, Professor of Radiology at the College of Medicine,
University of Nigeria, Nsukka

Professor Carin Uyl-de-Groot said, ‘With cancer incidence rising rapidly in low- and middle-income countries, access to lifesaving and life-expanding medicines must be a global priority. We need a system that not only drives pharmaceutical innovation but also ensures that patients everywhere—regardless of income—can benefit from it.’

Professor Mark Lawler said, ‘How can we stand by and allow people to die needlessly, when a known cure is available? Patients in LMICs have no means of accessing vital treatment. Why do we accept that 80% of the world's population have access to only 20% of its medicine? With so much funding for health being withdrawn from LMICs right now, due to the inhumane actions of the new US administration, in contrast to President George Bush’s successful PEPFAR2, it is imperative that we act now, otherwise many more lives will be lost.’

Our Call to Action stems from evidence gained directly through I2L members in LMICs. A survey conducted by I2L details medicines that are most needed in the hospitals of our members. If these medicines were available, thousands of lives could be saved. We call on governments, industry, and our collective humanity to recognise that there is a way to provide cancer treatments and pain relief to LMICs and save lives.

Peter Kapitein, founder of Inspire2Live, said, ‘We have the assistance of international organizations, global expertise and our feet firmly on the ground in so many countries in every continent. We are human. By nature, we should also be humane. Why shouldn’t we save lives?’
2

Notes for Editor:
Inspire2Live (I2L) is the patient’s voice in cancer. The organisation creates more options for a life of
quality around cancer globally, faster. They connect patients, physicians, researchers, government,
insurance companies and the industry to initiate and develop projects for the benefit of the patient.
https://inspire2live.org

Reference Notes:

1. Argentina

Armenia

We have 30 LMIC country members:

Brazil

Bulgaria

Caribbean (consists of 16 countries)

Chile

Indonesia

Iran

Jordan

Kenya

Lebanon

Lithuania

Costa Rica

Croatia

Nigeria

Pakistan

Cuba

Philippines

Egypt

Gabon

Romania

Senegal

Ghana

South Africa

Guinea

Tanzania

Hungaria

India

Ukraine

Uzbekistan

2. PEPFAR President’s Emergency Plan for AIDA Relief

Among the organisations we consult:

3. The Pharmaceutical Accountability Foundation (PAF) serves the public interest by striving

to ensure that medicines and medical technologies are made available in a socially

responsible and sustainable manner. We attach a value to fair pricing and distribution in

accordance with European and international legal standards, and therefore take action to

combat unjustifiable price gouging by companies abusing market monopolies. We seek to

achieve our objectives through the provision of advice and information to governments,

stakeholders professionals and the general public. If that does not help, we achieve our

objectives through the possible legal action around excessively high priced medicines. Our

Articles of Association (in Dutch) can be found here.

Contact information for Media Enquiries:

Peter Kapitein, Founder of Inspire2Live

Email: peter.kapitein@inspire2live.org

Phone number: +31 6 52 49 60 99

4 

New prostate cancer tests

Less Grey Imaging

I'm signed up to Prostate Cancer Research and they produce a great magazine with the latest research often funded by donations to them. At the moment the PSA remains the best test despite it's unreliability, however a couple of things stood out in the recent issue:

'Less Grey Imaging'; as we know the PSA test is not reliable. MRI misses 20% of cancers and a whopping six in ten men undergo unnecessary procedures. This new technology offers us up to a 20-fold increase in resolution compared to mpMRI, which provides a grey, difficult-to-read image.

It works by injecting a commonly used contrast agent into a vein that contains millions of tiny and harmless microbubbles that travel through the patient’s bloodstream to the prostate. Super resolution ultrasound imaging is then used to track these microbubbles as they flow inside the prostate. Due to the altered blood flow in cancerous tissue, the image highlights previously unseen tumours, enabling earlier diagnosis. 94% of tumours are correctly identified and the technology is cheaper, faster and less claustrophobic than  an MRI scan. It is now going to a Phase II trial to take it forward. It cannot come soon enough! 

See more including a short video re Less Grey Imaging here. You can support research into this here.

New 'Spit test'; earlier this year researchers from The Institute of Cancer Research in London made headlines by announcing that their at-home spit test could spot which men are most at risk of prostate cancer. The test doesn't look for signs of prostate cancer in the body but rather looks at changes to a man's DNA that increase risks of prostate cancer.  The test is not commercially available yet but is now going to a large £42m trial to see if this genetic approach works at scale.

PSE test: a couple of years ago the University of East Anglia announced their PSE test was 92% accurate at detecting the disease. The test is a combination of the existing PSA blood test and another blood test they developed in collaboration with Oxford Biodynamics, called the EpiSwitch test. This looks at how DNA is folded in specific immune cells which might provide tell-tale signs of prostate cancer developing in the body. The combination, which they called the Prostate Screening EpiSwitch test (PSE test). It correctly identified men who didn't have prostate cancer 94% of the time.

Urine test; another recent development is a new urine test that measures 18 genes associated with prostate cancer. It provides higher accuracy for detecting clinically significant cancers than PSA and other existing biomarker tests, according to a study published last year in JAMA Oncology.  This means less unnecessary invasive biopsies.

There are various other tests being developed including one using AI to look at 100 biological markers in blood and urine samples, but as Prostate Cancer UK caution “many of these tests are still very early in their development and require robust testing”. 

Glucose monitors: useful or not?

A couple of months ago I had the opportunity to wear a Lingo glucose monitor for 2 weeks. I've often over the years had times when I've craved carbs for an energy boost that when eaten then create a spike then a crash and more craving.....the 'spike-crash cycle'. I also used to get "hangry" - that hunger and irritability/anger that stems from a drop in glucose and creates a perfect storm for our hormones. Since my diagnosis and changing my nutrition this has been much much less so...almost not occurring....but occasionally it has surprised me - hence the interest in the monitor.

Was it worth it? 

I did learn stuff - more of that in a mo....before then by coincidence the week after I finished I came across a new study that calls into question the usefulness of these blood-glucose plans for folks without diabetes.

In two controlled studies using 30 participants, researchers found only weak-to-moderate correlations between the same meals eaten a week apart. This means your body's response to your morning porridge might be completely different from meal to meal. Which if true, makes basing food choices on how you react to one meal pretty pointless (and even dangerous!). See more at: https://examine.com/research-feed/study/1jjKq1/?

Glucose spike dangers?

So glucose spikes are when you have more glucose in your bloodstream than your cells can take up. Some degree of rise is completely normal but it is the dips or crashes that can impact on long term health - research suggesting not least an increased risk for developing insulin resistance, type 2 diabetes, and cardiovascular issues.

Serious sugar spike material

Sugar warnings?

Sugar and carbohydrates are the quickest to be converted to glucose - any not being used gets stored in the body. It is when it is too concentrated in the blood that it is called a glucose spike or blood sugar spike. 

Many of us with cancer have heard the 'warnings' that sugar can impact cancer - but also hear the NHS and and others saying that it is all 'a myth' - see for example this piece by Cancer Research UK here. They write: "All of our healthy cells need glucose too, and there’s no way of telling our bodies to let healthy cells have the glucose they need without also giving it to cancer cells. And cancer cells also need lots of other nutrients too, like amino acids and fats; it’s not just sugar they crave. There’s no evidence that following a “sugar-free” diet lowers the risk of getting cancer, or that it boosts the chances of surviving if you are diagnosed." 

The article goes on to note the concerns about sugar and obesity and the links between being overweight and cancer. However I do not think this takes seriously the growing evidence around the negative impact of refined sugar.

Read this blog by Robin Daly looking at this issue and evidence - he notes the views of NHS oncologist Professor Thomas: "Prof Thomas makes the point that, given the sheer volume of good evidence pointing towards dietary refined sugars and carbohydrates as both a source and driver of cancer, along with the catastrophic way that the grim reaper, cancer, is scything its way through developed nations around the globe, a zero-cost, safe intervention such as reducing intake of refined foods should be seen as eminently worth trying. Making utterly confident pronouncements about the absence of a relationship between sugar and cancer depends entirely on a totally suspect system that seeks to portray evidence as a binary ‘evidence/no evidence’ scenario, rather than as a more nuanced sliding scale of ‘more evidence’, ‘better evidence’."

Also see a useful and totally sensible discussion of sugar on this video of a Yes to Life Forum I helped host in October 2020 with nutritionist Kirstin Chick here.

Other factors

Spikes can also be caused by other factors like poor sleep, dehydration, caffeine, certain medications or stress - also during intense exercise. However it is most often eating carbs/sugar. 

Mild, dark and black tahini on toast

Some learning

My own monitor showed how my blood sugar spiked particularly after carbs - even just two oatcakes as a snack in the afternoon had a surprisingly large spike. In contrast the gluten-free toast with tahini's as part of a breakfast with a walk afterwards had less of a spike. Reducing snacking helped - and ensuring I had protein with every meal.

You will see the chart from my first week that I was missing the target but learning about some of the impacts....one noticeable improvement was going for a short walk after my evening meal.

The monitor I used was Lingo - others available - their app recorded great info and some useful tips but you need to download it as it seems to disappear from the app after the 2 weeks. Anyhow this rather basic info was from one of their blogs: 

How to avoid a glucose spike 

There are many ways to avoid a glucose spike naturally, and the best method is to be thoughtful with your food choices. Limit foods that are common sources of spikes such as refined carbohydrates, sugars, and sugary beverages, and instead opt for more complex carbohydrates that have fibre such as vegetables, fresh fruit, brown rice, quinoa, and whole grain bread. Even better, pair your carbohydrates with a source of protein and/or fat for a macronutrient-balanced option. 

Other lifestyle habits that can help keep your glucose steady include getting quality sleep, staying physically active, drinking plenty of water, managing stress, and limiting alcohol.

A lot of this is pretty obvious but I guess for me it was still a useful exercise in helping me think about meals again - over the years since diagnosis some good habits slip a little - it was a good reminder even if the research noted above suggests they may not be so useful. Anyone with any questions re this should speak with their medical team - this blog was just my experience.

See blog on Ultra-processed foods being recommended by NHS (??!): https://myunexpectedguide.blogspot.com/2023/04/ultra-processed-foods-recommended-by.html

See blog on best nutrition/recipe books: https://myunexpectedguide.blogspot.com/2024/02/best-nutrition-on-recipe-books.html