This is a great overview of prostate cancer treatments (and a bit about breast) - Chris Woollams of CancerActive interviewing NHS oncologist Robert Thomas; looking at treatment protocols, hormones, lifestyle and much more. I found it a great reminder but also some stuff I didn't know.
Showing posts with label Radiotherapy. Show all posts
Showing posts with label Radiotherapy. Show all posts
Thursday, 20 April 2023
Monday, 12 July 2021
Impact of radiotherapy 15 months on
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| Finishing Radiotherapy March 2020 |
Well its been nearly a couple of months since my last blog on this site - a collection of reasons plus busy times - it has also now been 15 months since finishing radiotherapy - and also deciding to finish the hormone treatment - so it seemed a good place to review where I am at. Some might also be interested in my previous blogs on radiotherapy by clicking on the tag.I guess it is worth saying that although the radiotherapy was aimed at getting rid of prostate cancer we don’t know whether that is the case - medical teams talk instead of being ‘in remission’; in other words no sign of cancer. Also no doctor can say for certain whether your cancer will come back. Each cancer is different and the success of your treatment will depend on many things.
Certainly what figures that are available indicate cancer does return in a number of cases; one article suggests up to 40 percent of patients with prostate cancer will show signs of recurrence (i). It is extraordinary that reoccurrence after treatment for early stage prostate cancer is still not properly recorded. This is critical info if we are to understand which men are most at risk of reoccurrence and which treatments are most effective.
However we must remember generally relative survival rates are high. There are many factors that can lead to more likely recurrence like cancer cells in lymph nodes, larger tumours, non-localised cancers, higher grade cancers, diet, men under 60 years and more. Hence, to my mind, an integrative approach where we are still actively working on health is the best call to reduce the likelihood of a return!
Update 22/5/22 - re photo of bell ringing - see this blog re riding the bell - a view that resonates with me: https://blogs.bmj.com/bmj/2019/06/04/jo-taylor-its-time-to-call-time-on-the-end-of-treatment-bell/
Stats
I’ve quoted before the wise words of Sophie Sabbage about avoiding statistics, that she writes in her book, “The Cancer Whisperer”. She says “staying away from soul-sapping, fear-inducing information that discusses indicators, but not inevitabilities.” That doesn’t mean we should settle for half-truths - as she says “Don’t let your oncologist or doctor protect you from the full facts. Push them for answers until you are satisfied you know it all.”
It is also worth noting that fear of reoccurrence can also be hugely damaging. To quote another statistic - approximately 7% of cancer patients develop severe and disabling fear that includes constant intrusive thoughts and misinterpretation of mild and unrelated symptoms (ii).
I have written before about fear and it can have a huge impact on our lives - it certainly has on me in the past. Things are much easier now but there is no question that fear is just under the surface at times. It remains, in my view, one of the number one areas to target in terms of an wholistic approach. To quote Sophie again; “If you don’t take hold of your fear your fear will take hold of you.” She talks about people dying of fear and shock and the need "to pass through it.”
I have been able, in the past, to attend one of her day workshops and just a few weeks ago caught this excellent webinar from Penny Brohn UK talking about how to reduce the impact of fear on medical outcomes and wellbeing. It is an excellent video and I do recommend a watch. See here: https://www.pennybrohn.org.uk/resource/impact-fear-cancer/
PSA results
I’ve had three PSA tests at 3 month intervals, 0.4 then 0.3 then 0.3 a couple of weeks ago. This doesn’t mean a lot at the moment and it could possibly fall more for up to two years after radiotherapy although it looks like it has possibly stabilised? If it rises more than 2.0 then that is when we have to take action. You can see more about PSA tests and bounces after radiotherapy in my blog where I talk about why I stopped hormone treatment here.
Side-effects
Cancer Research UK list long term side effects from radiotherapy and hormone treatment:
Radiotherapy: Problems passing urine, Leakage of urine, Erection problems (impotence), Frequent or loose poo, Inflammation of the back passage (proctitis), Swollen legs or scrotum, Cancer of the bladder or lower bowel, Weaker pelvic bones, Tiny cracks in the bones, Low levels of vitamin B12 (iv).
Radiotherapy side effects can and do occur for many years. Research has shown that men treated for their localized prostate cancer have been found to have similar long-term side effects regardless of treatment type. Both surgery and radiation therapy had similar levels of urinary incontinence, erectile dysfunction, and bowel urgency 15 years after treatment (vi). However the hormone side effects such as hot flushes and sexual problems, are likely to improve after treatment stops - but it can take several months for side effects to improve, although I have read that some men never notice any improvement. This is particularly so if hormone treatment is intermittent.
Urine problems
Well I won’t dwell on this but suffice to say I am still needing the loo three times each night and too often in a day, sometimes with urgency but only very occasionally with a tiny leak. It is enough to keep me at the pelvic floor exercises! There are also some bladder training exercises where you learn ways to wait longer between needing to urinate and passing urine. I’ve not got on well with these, as the moment I am thinking about waiting makes me want to go more.
I have been offered Tamsulosin as it can help urinary symptoms following radiation therapy (vii). However I didn’t feel comfortable taking it as I was managing mostly OK, plus I was concerned about a load of new side-effects and would I then become reliant on it?
Perhaps one of the worst impacts of urine problems like leakage is the accompanying shame. I’ve fortunately not had those moments like some guys who have talked about 'peeing their pants'. Certainly learning how best to manage it successfully can go a long way in easing the pain and embarrassment. I’m hoping that my challenges won’t get any worse!
Sex life
In terms of a love life - certainly the treatments have had an impact - something that perhaps doesn’t get talked about enough? But it isn’t just erections - for many there are other side effects that get even less mentions - climacturia, arousal incontinence plus orgasmic disturbances such as altered orgasmic sensation, anorgasmia, and orgasm-associated pain (dysorgasmia) (viii).
One article I welcomed was by Elvin Box sharing his prostate cancer story and the impact it had on his sex life: https://www.jodivine.com/articles/perspectives/winning-back-our-sex-life-after-prostate-cancer-a-personal-story-by-elvin-box
There are quite a few other resources online - here for example is a video by Dr Holzapfel who looks at some of the effects: https://pcstoronto.ca/2020/12/03/video-there-is-sex-after-prostate-cancer/
Sex is clearly an important part of our lives - for some much more than others - there is also evidence that it can play a part in healing. See a video by Jem Ayres looking at the 'Healing Power of Orgasm’: https://youtu.be/4wp7GYc4yok You can also see also my film of Jems' cancer journey here.
It is also worth noting that there is now research confirming that masturbation boosts your immune system (ix). However I guess if sex is an option then you don’t need such studies to encourage you back to it after treatment?! Then again perhaps too often fear and other stuff gets in the way?
Bones
We know radiotherapy has an impact on bones - and so does the hormone therapy yet it was my Functional Medicine practitioner that advised I get a scan. My GP readily agreed but I wonder why it isn’t standard practice?
A DEXA scan is a bone density scan that uses low dose X-rays to see how dense (or strong) your bones are. They are often used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. As well as being quick and painless, a bone density scan is more effective than normal X-rays in identifying low bone density (x).
It seems that your T scores are important; they show how your bone mineral density compares with others. Scores of +1.0 are good. Numbers between +1 and - 1 show normal bone mineral density. Scores between -1 and -2.5 indicate Osteopenia (thin bones). Less than -2.5 indicate Osteoporosis (porous bones) , eg. - 2.7, -3.0 etc. And -3.0 shows serious Osteoporosis.
Well I have osteopenia. Spine is minus 1.9 and hips are minus 1.6.
Update 2.10.23: See link between gut and bone health at: https://chriswoollamshealthwatch.com/your-illness/gut-bacteria-bone-density-and-osteoporosis/
So what is recommended?
1. Exercise. Like muscle, bone gets stronger when you use it. The best moves for bones are weight-bearing exercises that force your body to work against gravity. That includes walking, stair climbing, dancing, and lifting weights. I do all those except the weights.
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| Hoping dance will be poss again soon! |
1. Exercise. Like muscle, bone gets stronger when you use it. The best moves for bones are weight-bearing exercises that force your body to work against gravity. That includes walking, stair climbing, dancing, and lifting weights. I do all those except the weights.
2. Diet. High-calcium foods outlined on most websites include:
• Sardines and salmon, with bones
• Tofu
• Dairy products such as yogurt, low-fat milk, and cheese
• Green vegetables such as broccoli and collard greens
Dairy is largely a no-no for me as it’s linked to prostate cancer so I do try and manage to boost other calcium rich foods. My GP recommended looking at one of the calculators online to see if you are getting enough calcium: https://www.osteoporosis.foundation/educational-hub/topic/calcium-calculator
3. Vitamin D. Time outdoors in the sunshine each day helps as do some foods. Here is a list from one website:
• Fish such as salmon, tuna, and mackerel
• Fish liver oils
• Beef liver
• Cheese
• Egg yolks
• Fortified breakfast cereals, juices, milk products, yogurt, and margarine
However some of those foods I am avoiding. A vitamin D test a while ago showed I was at the low end of normal; many nutritionists and functional medicine practitioners like to see levels much higher than that. I have been supplementing around 3,000/4,000iu per day on advice from my practitioner.
4. Don’t smoke, drink less, cut back on salt and reduce caffeine. All great but caffeine intake is sacred at the mo!
In the past I have taken boron (recommended by doctors in Germany) for bone health, at present I have been recommended Algae calcium by my Functional Medicine practitioner - incidentally she recommended it some months before the DEXA test.
The GP is recommending another DEXA scan in 5 years. I am of course hoping the results will show an improvement!
Fatigue
Fatigue doesn’t get a mention by Cancer Research UK as a long term effect of radiotherapy. I wonder why as many other websites note fatigue, although most say it typically fades within three to six months. Talking to a number of people with prostate cancer I wonder how accurate this is. The US Government's National Cancer Institute website notes fatigue caused by radiotherapy can in some patients 'last months or years after treatment ends’ (xi).
Doing a quick google search - not always advised - shows research into prostate cancer patients having radiotherapy and hormones showed 'long- term high level of fatigue and high prevalence of chronic fatigue’ (xii).
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| Cartoon by Russ after reading this blog |
My own experience is that levels of tiredness are greater now than before the hormone and radiotherapy treatment. Not by any means dreadful but certainly not back to normal. Of course it is hard to unpick cause and effect as we’ve also had a very strange last 18 months with Covid. I was also made voluntarily redundant from a job I loved and despite having a new role and opportunities, that clearly does have an impact on health.
Another key factor with fatigue following radiotherapy is Vitamin B12 deficiency (as noted by Cancer Research UK). For the last five months I have taken some supplements particularly chosen for my situation as care is needed regarding B supplementation as there is also a link with increased prostate cancer risk. I also do seem to have a bit of a challenge re methylation - more of that in another blog - but it is a key process underlying epigenetic (see earlier blog here on epigenetics).
Lots of factors will impact on tiredness but this is an area that needs more research - there is still not an understanding of why treatments cause fatigue.
Other side effects
Another factor well researched but not listed above is the loss of muscle mass and strength (xiii). Hormones tamp down the production of testosterone that plays a role in developing and maintaining muscle mass. Resistance exercising is critical here and I can't say enough how important that is to do. I struggled significantly to restore muscles to pre-radiotherapy levels despite a good exercise programme.
I could also note some very minor rectal inflammation and possibly some memory challenges - but hey I am getting older and also know stress is a key factor with memory. I’m not sure I can put that down to the treatments!
Notes:
Thursday, 29 October 2020
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?
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| Dr Kay on Zoom |
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.
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| 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.
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| 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/
Thursday, 13 August 2020
Intermittent fasting, time restricted eating and more
Chris went on to argue that the benefits from fasting come after about 24 hours without food. As I wasn’t ready to fast longer I dismissed the idea of shorter fasts. It is certainly true there is lots and growing evidence about longer fasting. I’ll come to that in a mo but I am also not so dismissive of the shorter 12-16 hour fasts. Although as with so many aspects of health it is hard to unpick what folks are staying - not least as there are so many versions of ‘intermittent fasting’ and of course we are all so different.
A 2016 study looked at over 2,000 women with early stage breast cancer and looked at the role prolonged night time fasting might play in breast cancer recurrence (iii). Women who had a short duration of nightly fasting (less than 13 hours between the evening meal and breakfast) were 36% more likely to experience a breast cancer recurrence than those who had a nighttime fasting duration of more than 13 hours. However the increased risk of recurrence was not associated with increased mortality from breast cancer or overall mortality. The researchers suggest that longer periods of follow-up might reveal an association. But hey this is just one piece of research….
Fasting and nutrition
A lot of the Intermittent fasting research does not seem to say much about our choices of food. Yet we know what we eat is critical. Dr. Valter Longo, Professor of the USC School of Gerontology has done loads of work in this area and written the ground-breaking book, ”The Longevity Diet”. He describes in the book his everyday diet, based in part on research including studies of centenarians and long-lived populations around the world. It is mainly plant-based, low in protein and rich in unsaturated fats and complex carbohydrates. Some fish is allowed once or twice a week - see more at: https://www.createcures.org/cancer/ Interestingly for over 65s there is some relaxation of the diet: https://www.createcures.org/longevity-diet-for-adults/
And of course following any diet should be done with the knowledge of your doctors. This is even more so when we talk below about fasting as it can have many unforeseen consequences and indeed can be very dangerous.
Longo is clear that we need to look for quality in food and not demonise any particular food group. He says in an interview in an article (Feb 2019) (iv): "The truth is fats are good and bad. Carbs are good and bad. Proteins are good and bad. Fats like olive oil, nuts, salmon are actually associated with positive effects. It is saturated fats and trans fats that are associated with a lot of problems. You hear a lot about low-carb or no-carb diets, but the right carbohydrates, including legumes, vegetables and whole grains, are very good for you. In fact, all the populations who have record longevity have a high carbohydrate diet. All of them. No exceptions. It may seem easier to label foods as good or bad, but in the long run this leads to problems”.
So yes to intermittent fasting?
In his book he clearly recommends a form of intermittent fasting - time-restricted eating - and this is in addition to his ’Longevity Diet' and the periodic five day Fasting-Mimicking Diet. In the article where Longo is quoted above, he is asked specifically about the timing of when we eat. His response is: "It turns out that it is important is to stick very close to 12 hours of feeding and 12 hours of fasting. If you eat 15 hours a day or more, that starts to be associated with metabolic problems, sleep disorders, etc. This is a new habit. If you ask centenarians, it is almost unheard of in these groups. But also, if you fast for longer than 12 or 13 hours, that starts to be associated with problems like gallstone formation, and we also know that longer fasts can lead people to skip breakfast. There are a number of studies, and we have our own data supporting this, showing that skipping breakfast is associated with increased risk for overall mortality and cardiovascular disease. So not only is it not good, it is bad for you”.
So daily 12 hours fasting looks good - or as Longo calls it “time-restricted eating” - and he also recommends not eating 3-4 hours before bed.
Ayurveda and a Nobel prize
This leads me onto a workshop that Dr Sam Watts, a leading Ayurvedic Consultant, ran on Facebook this week on Intermittent Fasting. In that excellent session he shared that in 2016 the Nobel Prize was won by Japanese cell biologist Yoshinori Ohsumi (v). This confirmed what the Ayurvedic tradition has been saying for many hundreds of years. Fasting can be very good for us. Indeed fasting for more than 12 or 24 hours hours triggers autophagy - this is when cells destroy viruses and bacteria and get rid of damaged structures (see film here to explain autophagy) (vi). The word autophagy comes from the Greek for "self" and "phagein", which means "to eat” - and it’s key for the health of our cells and indeed our survival. This links to the reasons that fasting is associated with longevity.
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| Granddaughter pic of me rebounding |
So from this research it would seem the wonderful process of autophagy starts to kick in between 12 and 16 hours which maybe why the research noted above saw some benefits? And why Sam Watts recommends once or twice a week doing a 16 hour fast. This would perhaps then avoid the concerns Longo had around gallstones?
The five day Fasting-Mimicking Diet
Evidence is certainly mounting for the impact of fasting; reduced blood sugar and blood growth hormone (IGF-1), very low triglyceride and insulin levels, immune system regeneration and stopping cancer progression. And wow there are so many ways to fast - the internet is full of them from the 5:2 Diet (viii) to the Vedic way of 24 hour fasts on the 11th and 22nd days of the lunar cycle (ix). I started looking at possibilities ahead of my radiotherapy as it can help with that (x).
I can’t vouch for any of those fasting techniques but I do like the rigorous science behind the work of Dr Longo - in his book he gives a couple of weeks of food suggestions for his ’Longevity Diet’ and covers loads of the research to back his five day Fasting-Mimicking Diet - indeed it has been clinically demonstrated to provide huge beneficial effects on aging and disease risk factors. Of course as mentioned already don’t embark on this without doctor being involved - is is potentially dangerous for some conditions.
Longo has also shown that it looks like fasting significantly improves the performance of chemotherapy while reducing side-effects greatly. However fasting is not always possible on chemo which is why he has developed the Fasting-Mimicking Diet. Sadly this 5 day diet is only covered very briefly in his book - indeed to proceed safely it looks like you need to purchase food boxes at around $250 a time(xi)? And I don’t think these products are even organic or fresh?
Interestingly new research from Longo is around using fasting as a groundbreaking method to avoid hormone therapy resistance in breast cancer - and I guess other cancers like prostate? I have had hormones twice in the past as part of my treatment so was very interested to hear about this (xii). You can listen to Longo being interviewed by Chris Wark here (xiii)
There is also an amazing opportunity to hear Longo and ask questions in the second 'Your LIfe and Cancer ' weekend: https://www.yourlifeandcancer.com/expanding-your-knowledge.
So where does that leave me?
1. Time-restricted eating. Eating in a 12 hour window where possible seems to make sense; this is possible but do have tottery and stop the need for nuts or something later in evening.
2. 16 hour fast. Try once or twice a week to go for a 16 hour fast; have done this a couple of times missing breakfast and surprisingly hard for me - I will persist and try missing dinner next time. I am also learning to fit it with the rhythm I mentioned in a recent blog - see here (xiv).
3. A longer Fast? I feel I still need to do some more research; just liquids carry there own challenges particularly when I am just on the bottom end of ideal weight - FMD also doesn’t feel the right place to start with a box sent from the states. Is there anyone who does that in this country?
Update 30th Sept 2020; just seen this blog on intermittent fasting by the wonderful Nasha Winters: https://www.drnasha.com/2020/09/14/intermittent-fasting-for-beginners-everything-you-need-to-know-to-get-started
and here's a useful Tedx talk on intermittent fasting: https://youtu.be/A6Dkt7zyImk
Update 8th January 2021; I also just listened to this Dr Chatterjee podcast: https://drchatterjee.com/episode-21-circadian-rhythms-and-time-restricted-feeding-with-professor-satchin-panda-part-1/ and https://drchatterjee.com/episode-22-why-when-you-eat-matters-with-professor-satchin-panda-part-2/
Update 2.10.22: Must get around to a blog on chemo and fasting but in meantime see: https://nutritionfacts.org/video/fasting-mimicking-diet-before-and-after-chemotherapy/
Notes
(i) https://www.canceractive.com/article/Intermittent-fasting-is-basically-a-waste-of-time
(ii) https://pubmed.ncbi.nlm.nih.gov/29951594/
(iii) https://jamanetwork.com/journals/jamaoncology/fullarticle/2506710
(iv) https://news.usc.edu/135551/fasting-aging-dieting-and-when-you-should-eat-valter-longo/
(v) https://www.nature.com/articles/543S19a
(vi) https://www.bluezones.com/2018/10/fasting-for-health-and-longevity-nobel-prize-winning-research-on-cell-aging/
(vii) https://pubmed.ncbi.nlm.nih.gov/22258505/
(viii) https://thefastdiet.co.uk/
(ix) https://www.learnreligions.com/ekadasi-hindu-lunar-calendar-1770178
(x) https://myunexpectedguide.blogspot.com/2019/11/increasing-effectiveness-of.html
(xi) https://prolonfmd.com/
(xii) https://www.nature.com/articles/s41586-020-2502-7
(xiii) https://www.chrisbeatcancer.com/dr-valter-longo-fasting-mimicking-diet-improves-breast-cancer-treatment/ Also see more re Longo at: https://valterlongo.com/cancer/
(xiv) https://myunexpectedguide.blogspot.com/2020/07/getting-in-rhythm.html
Friday, 17 April 2020
Finished radiotherapy; should I continue hormones?
 |
| Ringing bell at completion of radiotherapy |
Intermediate or high risk?
Well, there are various ways that the risk has been defined but one of the most widely used is the one developed by the National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of leading cancer centers. My understanding that NCCN assess as follows:
What treatment is recommended?
High-Risk Prostate Cancer -
'Radiotherapy treatment options for patients with high-risk prostate cancer are EBRT in combination with hormonal therapy; EBRT and brachytherapy combinations; EBRT in combination with brachytherapy and hormonal therapy. (Consistent level 2 or 3 studies; or Extrapolations from level 1 studies). A combination of radiation therapy and consideration for long term hormone androgen deprivation therapy (level 1).'
However the research seems to contradict itself at times. In possible contrast to the above, the Radiation Therapy Oncology Group Protocol 92-02 trial of T2-4 men they found that at 20 years, long-term ADT significantly increased 15-year disease-free survival with 15.7 versus 10.0 percent with short-term 4 month ADT (vii). Meanwhile a RADAR study of 1071 men showed at 10.4 years that an 18 month duration of ADT was associated with a significant reduction in prostate cancer-specific mortality compared to 6 months ie 9.7 versus 13.3 percent (viii).
So there is a favorable and an unfavorable intermediate risk! The former possibly doing worse with ADT while the latter group doing better with ADT (ix). One report in 2016 writes: "The role and duration of ADT, however, remains a controversial issue (x)”.
Indeed! More research is needed! Looking at my tests it is hard to see where I fit, as I could fall into either category although possibly more likely the less favorable; however without further tests I won’t know for sure - and I want to avoid another biopsy - see my blog (xi). Saying no now doesn’t mean I won’t use them again if needed. I am also aware that the longer you take them the less effective they are so maybe keeping them for a possible need in the future might be good? Sadly I can’t find research to indicate whether or not this might be true!
The research is not so clear but other factors also play a part - my reaction to the hormones is very strong with many side effects that significantly adversely affect my wellbeing. However key in all this for me, is intuition. See my blog from a couple of months ago here (xii). There was and is a deep knowing, that more hormones would not be best for me. Of course I discussed all this with my oncologist and she was great at listening and agreed that I was borderline. So it's no to more hormones after the radiotherapy.
Side effects
As I write this it is some seven weeks since I finished radiotherapy ands I’m doing well; only slight awareness of rectal inflammation discomfort, am only going twice to the loo at night compared to eight times before so a significant improvement in the bladder inflammation, hormones are still impacting with hot flushes, muscle wastage and fatigue - of course hard to tell what is causing fatigue at the moment - is it the hormones or radiotherapy? A friend was off work for four months following his treatment. Or is it the current situation we all find ourselves in; such strange times causing stress in new ways as we face fears, new challenges at work or home and in our communities? Certainly I’m not sleeping as well at the moment despite not being woken by my bladder.
Well, there are various ways that the risk has been defined but one of the most widely used is the one developed by the National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of leading cancer centers. My understanding that NCCN assess as follows:
- Intermediate-risk: T2b-T2c or Gleason score = 7 or PSA 10-20μg/L.
- High-risk: cT3a, Gleason score 8-10 or PSA >20μg/L
- High-risk: cT3a, Gleason score 8-10 or PSA >20μg/L
Other organisations are similar. I was T3a with Gleason 7 (3+4) and PSA once over 20 but more recently over 10. The 3a extraprostatic extension is without seminal vesicle involvement. See great article re Gleason at: https://sperlingprostatecenter.com/gleason-grade-group-system/
The T3a puts me clearly in High Risk which my previous oncologist liked to stress at what seemed like every opportunity - was probably his concerns when I was talking about alternatives to radiotherapy. However, while my first MRI in July 2017 labelled me T3a, the MRI in January 2019, following the treatment in Germany (see about transuretheral hyperthermia here iii), reported T2c/T3a. Now put this latter figure with my Gleason and PSA and I am clearly borderline.
The T3a puts me clearly in High Risk which my previous oncologist liked to stress at what seemed like every opportunity - was probably his concerns when I was talking about alternatives to radiotherapy. However, while my first MRI in July 2017 labelled me T3a, the MRI in January 2019, following the treatment in Germany (see about transuretheral hyperthermia here iii), reported T2c/T3a. Now put this latter figure with my Gleason and PSA and I am clearly borderline.
Update 22/5/22 - see this blog re riding the bell - a view that resonates with me: https://blogs.bmj.com/bmj/2019/06/04/jo-taylor-its-time-to-call-time-on-the-end-of-treatment-bell/
I have heard that taking the hormones after radiotherapy can increase 15 year survival by 10% or more. However when I came to research it, it was not so straight forward. My current oncologist kindly supplied me with a great 18 page summary of research into hormones and radiotherapy with links to the research itself (iv). It was quite a read! And not always so easy to unpick. I also read a number of other reports by the NCCP (v) - and learnt that level one studies are the most thorough, level two the next then level three (vi). Here are some of my findings from those reports that resonated with my situation;
'Radiotherapy treatment options for patients with high-risk prostate cancer are EBRT in combination with hormonal therapy; EBRT and brachytherapy combinations; EBRT in combination with brachytherapy and hormonal therapy. (Consistent level 2 or 3 studies; or Extrapolations from level 1 studies). A combination of radiation therapy and consideration for long term hormone androgen deprivation therapy (level 1).'
Intermediate-Risk Prostate Cancer - 'All radiotherapy treatment options are appropriate (EBRT and/or brachytherapy) to be considered for patients with intermediate-risk prostate cancer. (Consistent level 2 or 3 studies; or Extrapolations from level 1 studies). Hormonal therapy should be considered in addition to EBRT. (Level 1 study). Androgen; deprivation therapy for four to six months should be considered in conjunction with EBRT. A pooled analysis suggests that a duration of six months is optimal. (Level 1 study).'
 |
| MRI Scan Jan 2019 |
However the research seems to contradict itself at times. In possible contrast to the above, the Radiation Therapy Oncology Group Protocol 92-02 trial of T2-4 men they found that at 20 years, long-term ADT significantly increased 15-year disease-free survival with 15.7 versus 10.0 percent with short-term 4 month ADT (vii). Meanwhile a RADAR study of 1071 men showed at 10.4 years that an 18 month duration of ADT was associated with a significant reduction in prostate cancer-specific mortality compared to 6 months ie 9.7 versus 13.3 percent (viii).
Also in the report it notes: 'ADT has an established role in conjunction with EBRT for men with regionally localized high-risk prostate cancer, although its role is less well defined for those with intermediate-risk disease. EBRT for high-/very high-risk disease should always be administered with long-term ADT. Patients with unfavorable intermediate-risk disease can be treated with RT alone (EBRT with or without brachytherapy), but for most patients, we suggest combined RT plus ADT. Our approach is consistent with year 2018 ASCO guidelines, which advocate ADT in conjunction with EBRT (with or without brachytherapy) for men with high- or very high-risk prostate cancer but do not provide guidance on this issue for intermediate-risk disease. Consensus-based guidelines from the NCCN advocate ADT in conjunction with EBRT for men with high-risk and unfavorable intermediate-risk disease but not for those with favorable intermediate-risk disease'.
So there is a favorable and an unfavorable intermediate risk! The former possibly doing worse with ADT while the latter group doing better with ADT (ix). One report in 2016 writes: "The role and duration of ADT, however, remains a controversial issue (x)”.
Indeed! More research is needed! Looking at my tests it is hard to see where I fit, as I could fall into either category although possibly more likely the less favorable; however without further tests I won’t know for sure - and I want to avoid another biopsy - see my blog (xi). Saying no now doesn’t mean I won’t use them again if needed. I am also aware that the longer you take them the less effective they are so maybe keeping them for a possible need in the future might be good? Sadly I can’t find research to indicate whether or not this might be true!
Update 9/09/20: well here's some research that seems to confirm my suspicions: https://www.prostatecancer.news/2020/09/adding-adt-to-external-beam-radiation.html
Update 16/5/22 On hormones: https://www.canceractive.com/article/the-reality-of-lowered-testosterone-and-higher-oestrogen-in-men-counters-orthodox-theories-of-prostate-cancer
So I have to sit with not knowing for sure what might be best? Or do I?
Of course I am not free for a while - the hormones do remain in the body for some months, so while my last hormone treatment of three months finished on 26th February it will be a while before I stop having those symptoms. In fact at the moment they seem to be worse as my body perhaps struggles to regulate itself?
PSA bounce and the 'nadir'?
Bounces are periodic fluctuations to the PSA that can occur years after treatment and are not to worry about. They are seen as more than 0.2mg/nl increase but less than 2.0 ng/ml above the lowest level (nadir) it had reached
thus far, followed by a decrease to as low or lower than the previous
nadir - see blog to understand more at: https://pcnrv.blogspot.com/2018/03/bounces-after-primary-radiation-therapy.html
Following radiotherapy, a recurrence of prostate cancer can be defined as a PSA value of 2μg/L above the nadir after treatment. I read that it is important not to misinterpret PSA bounce as a biochemical recurrence following radiation. This phenomena tends to occur within one to two years after radiotherapy. The PSA nadir is the absolute lowest level that the PSA drops after treatment (and can take a number of years to reach). The PSA nadir can be important in further diagnosis and treatment.
Following radiotherapy, a recurrence of prostate cancer can be defined as a PSA value of 2μg/L above the nadir after treatment. I read that it is important not to misinterpret PSA bounce as a biochemical recurrence following radiation. This phenomena tends to occur within one to two years after radiotherapy. The PSA nadir is the absolute lowest level that the PSA drops after treatment (and can take a number of years to reach). The PSA nadir can be important in further diagnosis and treatment.
Research from 1997 notes (xiii): "For possible cure of prostate cancer with radiotherapy, a prostate-specific antigen nadir of 0.5 ng/mL or less should be achieved. With this nadir level, disease freedom after irradiation is defined as achievement and maintenance of a nadir of 0.5 ng/mL or less. A nadir greater than 0.5 ng/mL or subsequent increase above 0.5 ng/mL is defined as irradiation treatment failure. This definition may help resolve the controversy about the potential for cure of prostate cancer by irradiation”.
While 2017 research notes (xiv): "Nadir PSA at 0.06 is a strong independent predictor of biochemical disease free survival (BFS) in patients with intermediate or high risk prostate cancer treated by definitive EBRT and ADT. PSA levels after ADT and EBRT were typically obtained every 4 months the first 2 years and every 6 months thereafter. These values were recorded, and the lowest PSA value attained was considered as the nadir PSA.”
Useful research update 5.6.23: PSA Nadir 6 Months After Radiotherapy Is Strongly Prognostic of Long-Term Survival in Patients With Localized Prostate Cancer: https://dailynews.ascopubs.org/do/psa-nadir-6-months-after-radiotherapy-strongly-prognostic-long-term-survival-patients?
Where am I now?
Well a lot of the docs say now is the time to wait and see if the radiotherapy has worked. That doesn’t feel right to me. I’ve said before it makes no sense to me if all we do is remove the cancer - surely what caused it could still be there? I’ve also written lots about mind-body including the Bristol Whole Life Approach used at Penny Brohn to maximise our health (xv). I know that that approach will give cancer the least likely chance of it returning. So now is the time to continue to develop my protocol again - since diagnosis I have been working at many aspects including diet, exercise, saunas and more. All that will continue and I’ve adjusted my supplement protocol in recent weeks - see below for latest. As noted previously this is always under review as I stop some, restart others and introduce new elements.
Current supplements (that I’ve written about previously; click on tag or use search box):
Probiotic x1 (where poss taken with raw veg)
Vitamin D 5,000IUs (less when we’ve had so much sun)
Turmeric x2 tablets plus some in food
Selenium x1
Milk Thistle 15 drops x3
Solidago (just finishing)
Magnesium Citrate
Probiotic x1 (where poss taken with raw veg)
Vitamin D 5,000IUs (less when we’ve had so much sun)
Turmeric x2 tablets plus some in food
Selenium x1
Milk Thistle 15 drops x3
Solidago (just finishing)
Magnesium Citrate
Zinc
Chlorella
Green tea
Fish oil
Boron
Chlorella
Green tea
Fish oil
Boron
Lecithin
Iodine drop
Boswelia
Immiflex (just restarted a course as want to keep immune system good at mo)
Just stopped these elements as bladder is so much better:
Uva Ursi
Echinacea
Just stopped these elements as bladder is so much better:
Uva Ursi
Echinacea
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| Poem book; different reactions to diagnosis |
As I write this it is some seven weeks since I finished radiotherapy ands I’m doing well; only slight awareness of rectal inflammation discomfort, am only going twice to the loo at night compared to eight times before so a significant improvement in the bladder inflammation, hormones are still impacting with hot flushes, muscle wastage and fatigue - of course hard to tell what is causing fatigue at the moment - is it the hormones or radiotherapy? A friend was off work for four months following his treatment. Or is it the current situation we all find ourselves in; such strange times causing stress in new ways as we face fears, new challenges at work or home and in our communities? Certainly I’m not sleeping as well at the moment despite not being woken by my bladder.
What next?
Well I want to review where I am at and look more at hormones - this is a topic I’ve come to several times but there are many questions - and am still struggling to understand! A long while back my oestrogen levels were tested privately and were high. I embarked on reducing this with supplements like indole 3 carbinol and Vitamin D and others that supports the liver.
You see as Chris Woollams writes: "studies from Australia, Singapore, Japan and MD Anderson in Texas, which all pointed in the same direction: Namely that as a man ages, his oestrogen levels increase, while his testosterone levels decline. And this leads to an era of higher prostate cancer risk. Despite all this, current orthodox medical treatment for prostate cancer still aims to cut nasty old testosterone". You can read more in his article at: https://www.canceractive.com/article/the-reality-of-lowered-testosterone-and-higher-oestrogen-in-men-counters-orthodox-theories-of-prostate-cancer
You can also see what might help in this other article by Chris Woollams: https://www.canceractive.com/article/natural-aromatase-inhibitors
And an interesting video looking at how DHT is protective against prostate cancer - this seems to go against some of the orthodox medical views but supports Chris Woollams approach: https://www.youtube.com/watch?v=69z5igxLokM
Update 24/01/22 An interesting piece of research suggests some of these new hormone treatments increase chances of depression and we know that depression is associated with worse cancer outcomes and worse survival rates: https://www.canceractive.com/article/depression-may%20double%20with%20new%20prostate%20drugs
Notes
(ii) https://myunexpectedguide.blogspot.com/2020/03/second-round-of-hormone-treatment.html
(iii) https://myunexpectedguide.blogspot.com/2019/06/transurethral-hyperthermia-my-experience.html
(iv) From: Initial management of regionally localized intermediate-, high-, and very high-risk prostate cancer and those with clinical lymph node involvement (Feb 2020)
(iii) https://myunexpectedguide.blogspot.com/2019/06/transurethral-hyperthermia-my-experience.html
(iv) From: Initial management of regionally localized intermediate-, high-, and very high-risk prostate cancer and those with clinical lymph node involvement (Feb 2020)
https://www.uptodate.com/contents/initial-management-of-regionally-localized-intermediate-high-and-very-high-risk-prostate-cancer-and-those-with-clinical-lymph-node-involvement
(vi) https://www.cancer.gov/publications/pdq/levels-evidence/treatment
(viii) https://www.ncbi.nlm.nih.gov/pubmed/30579763
(ix) https://www.cancernetwork.com/oncology-journal/favorable-vs-unfavorable-intermediate-risk-prostate-cancer-review-new-classification-system-and-its
(x) https://ro-journal.biomedcentral.com/articles/10.1186/s13014-016-0656-0
(xi) https://myunexpectedguide.blogspot.com/2018/12/to-biopsy-or-not.html(ix) https://www.cancernetwork.com/oncology-journal/favorable-vs-unfavorable-intermediate-risk-prostate-cancer-review-new-classification-system-and-its
(x) https://ro-journal.biomedcentral.com/articles/10.1186/s13014-016-0656-0
(xii) https://myunexpectedguide.blogspot.com/2020/02/following-my-intuition-no-to-melatonin.html
(xiii) https://www.ncbi.nlm.nih.gov/pubmed/9123692
(xiv) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590195/
(xv) https://myunexpectedguide.blogspot.com/2018/08/a-mind-body-revolution-is-underway.html
(xiii) https://www.ncbi.nlm.nih.gov/pubmed/9123692
(xiv) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590195/
(xv) https://myunexpectedguide.blogspot.com/2018/08/a-mind-body-revolution-is-underway.html
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