Currently trending on RonnyAllan.NET

Currently trending on RonnyAllan.NET

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I realise some of you are busy but if you wanted a quick catch up and summary of what's currently relevant on my site, you can bookmark this article and refer to it time and time again.  It will automatically update the top 10 list below which are the most read posts in the previous 48 hours on my site.  These views will have come from various sources of reading including my Facebook pages, Twitter, Pinterest, Wordpress, newsletters and in my private group. I hope many of you will find this new tool useful. Thanks as usual for your phenomenal support. Ronny Click here to join my private Facebook group…
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Ronny Allan Newsletter – 1st January 2021

Ronny Allan Newsletter – 1st January 2021

Newsletters, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Happy new year everyone! OverviewJust when things couldn't get weirder, they get weirder.  At the beginning of the year, I started as I meant to go on, more advocacy work, more support for patients, grow my pages, grow my website, grow my private group.  I achieved most of it (and then some).  In February/March, it became obvious things were happening that would have serious consequences.  Nonetheless, I think most people thought it would all be over in a few months. We got that wrong......Where I live, December just got worse, we are in a very serious second wave of the virus and it could even turn out to be more…
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A 2020 blog review (RonnyAllan.NET)

A 2020 blog review (RonnyAllan.NET)

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to view the A to Z of Neuroendocrine Cancer by Ronny Allan I should be happy with just over a third of a million views in 2020 but I'm not!   I had a target to beat 370,500 from 2019 but fell short by 35,000 (an average month).  However, you can see from the chart below, I was on track in Jan/Feb but knocked sideways by the COVID pandemic in March to August. I never got back above 30k in one month (my average) until November. December is traditionally quieter.  Hopefully 2021 will be a better year.  Facebook is a prime outlet for my blog views (by a country…
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Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place the cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could have access to a new tool to be able…
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I will take the vaccine, no question

I will take the vaccine, no question

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Photo by Nataliya Vaitkevich from Pexels Opinion post.  Please note this post is about the author and should not be considered a recommendation for you to get the COVID-19 vaccine. It's based on my own research, my own condition and my own decision derived from my own analysis of any perceived risks to my own situation. I'm confident the independent UK Medicines and Healthcare products Regulatory Agency (MHRA) has met strict standards of safety, quality and effectiveness, the UK is known for its thoroughness (as are many other countries).  In UK, any coronavirus vaccine that is approved must go through all the clinical trials and safety checks all other licensed…
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Thanks a MILLION …and another half!

Thanks a MILLION …and another half!

Awareness, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email thanks all! I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and now in December 2020, a Christmas present of one and a half million!  When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach 1.5 million hits and accumulating around 17,000 followers across all my social media sites.I'm now heading for 2 million and I often think I might have a screw loose by even thinking about…
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Ronny Allan Newsletter 1st December 2020

Ronny Allan Newsletter 1st December 2020

Newsletters, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy November with a look ahead for December and beyond.  October 2020 was manic, but November was just as manic but in a different way.  It was also a better month in terms of growth (increased viewing statistics etc).In UK. most of November had been under new COVID restrictions but due to the weather this time of year, I was not able to exploit that as much as the first lockdown in April/May.  Despite that, I'm built for lockdowns due to a 'regimented' upbringing in the military, so was able to stay busy and relaxed when needed. Still managed to get a few walks and cycles now…
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Ronny Allan Newsletter 1st November 2020

Ronny Allan Newsletter 1st November 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This newsletter covers a busy October with a look ahead for Nov/Dec.  September 2020 was manic but October, although slightly less busy, has been a mix of activity, much of it devoted to personal pursuits.  The end of October in UK has arrived and an announcement of another nationwide COVID lockdown. his will keep me low profile in November but as I've said before, I'm built for lockdowns as long as I can get a walk or cycle in the woods now and then!The newsletter is divided into a number of sections:1. External news of interest.  A shortlist of things I picked up on my social media travels.2. A bit of…
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Ronny Allan Newsletter 1st October 2020

Ronny Allan Newsletter 1st October 2020

Newsletters
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email September 2020 has been another very interesting month and I'm still trying to work out how I've been able to pack it all into 30 days.   It's a month full of personal 'cancerversaries', things that have inspired me to do more and signs of normal life returning (well at least a new normal).   The newsletter is divided into a number of sections: 1.  External news of interest.  A shortlist of things I picked up on my social media travels. 2. A bit of inspiration.  Something which was very popular with my following and I wanted to share with you this month. 3. External projects - what I've been up to…
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“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had.  I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure.  In it he said "I'm vertical" in classic Jobs language and positive outlook.  Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a good one except it falls for the usual trap - that he had Pancreatic Cancer.  I made a comment of course - you might like to too.   It's probably too…
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1.4 million thanks!

1.4 million thanks!

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site.  So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share.  Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny
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RonnyAllan.NET – Newsletter 1st September 2020

RonnyAllan.NET – Newsletter 1st September 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interestNot surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during August from my google alerts, from direct contact or from twitter (the latter is a key source for me to hear about what's happening).1. The Middle East Neuroendocrine Tumor Society (MENETS) will hold their first World NEN Lives 2020 Congress this September 23-24 virtually via Zoom. This congress is designed to showcase treatment options and ways to live better with and around NENs. The speakers include some of the top NEN world specialists as well as patients and…
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RonnyAllan.NET – Newsletter 1st August 2020

RonnyAllan.NET – Newsletter 1st August 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email External news of interest Not surprisingly, news about Neuroendocrine Cancer has been a bit slow but I sense that things are starting to pick up. Here's a few items I picked up during July from my google alerts or from twitter (a key source for me to hear about what's happening). 1. 64Cu DOTATATE PET scans. This is an alternative scan that's been in use in Europe but is undergoing trials in US - it has some advantages in particular a more logistically efficient generator system than the Ga68 PET. There's been an announcement of an expanded access program in US providing access to nuclear PET scans for NET patients…
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10 years, I’m still here

10 years, I’m still here

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I finally made 10 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility.  I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit.  It was incurable.  And, unique to serotonin secreting…
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Don’t be cavalier with a cancer diagnosis

Don’t be cavalier with a cancer diagnosis

Awareness, Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  [caption id="attachment_19230" align="aligncenter" width="640"] Denial[/caption]I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.  In fact it happened on 24th July 2010, 10 years to the date this post was published.  (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill.  In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'.  I…
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Neuroendocrine Cancer – no sweat!

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I see so many questions and comments in my private group about 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. I decided to extend it to diet because diet can be involved and late eating may result in a night sweat (technical name - sleep hyperhidrosis). One site, Medical News Today, indicated around…
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Post COVID lockdown – the new normal is not normal

Post COVID lockdown – the new normal is not normal

Inspiration
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This new normal just isn't normal! I'm lucky to have beautiful forests to my east and west but to my south is probably the best beach coastline in UK. We decided to walk along a section of that award winning 7 mile bay. But we went via a shop. I had to return something purchased shortly before lockdown and like most shops which shut, this one extended the returns period due to COVID-19. The shop was a big one and easy to distance, but the preparations were very good indeed. I donned a face covering and upon entering, I was instructed to wash my hands with sanitiser before proceeding to…
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Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 12) – a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 12 of my Living under COVID-19 series.  A story of surviving, cycling, Scottish holiday memories including the 'Fairy Pools'7th JuneNational Cancer Survivors Day was on 7th June. It's a celebration of life and if you're reading this, you're surviving. Share and let people know you're still here. Or just tell me below!I'm still here!#NationalCancerSurvivorsDayA wee story to finish off #NationalCancerSurvivorsDay22 miles of cycling today to celebrate life. A story about woods, animals, a long straight road with an interesting history and a bombing range.We had already cycled and walked parts of this route but our new e-bikes mean we can go further in a shorter space of time - i.e. we…
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The NETest® – a Chromogranin A replacement and more?

The NETest® – a Chromogranin A replacement and more?

Clinical Trials, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Tumour Markers GeneralFor some years the gold standard tumour marker for Neuroendocrine Neoplasms (NENs) has been and remains today, Chromogranin A (and for certain scenarios Chromogranin B and C can provide some additional clues).  Pancreastatin, which is actually a molecule of Chromogranin A, is another marker touted but appears to be limited to USA. Its main advantage is the ability to better handle the effects of Proton Pump Inhibitor (PPI) use which is prevalent in the general population.  As we move to a new era of molecular/genetic tumour markers, there's a danger that NENs will be left behind, stuck with diagnostic tools not capable of meeting new demands. I see a…
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RonnyAllan.NET – Newsletter 1st July 2020

RonnyAllan.NET – Newsletter 1st July 2020

Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Coping with lockdownDuring June, I decided I continued to be active outside despite the fact I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma. Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping. Of course the outdoors is also a garden (yard) and so that counts too!  Back in March I told the story of my own symptomatic period and perhaps one day I might find out if I have antibodies when I'm…
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SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

SSTR PET – Ga68-DOTA-JR11 vs Ga68-DOTATATE

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Headline - 68Ga-DOTA-JR11 was found to detect significantly more liver lesions than 68Ga-DOTATATE; however, 68Ga-DOTATATE detected more bone lesions than 68Ga-DOTA-JR11.Although it had been in trial use for some years in Europe and elsewhere, the formal approval of 68Ga-DOTATATE has led to an increase in the development of other radionuclides, some in conjunction with therapeutic options (i.e. PRRT) making a 'theranostic' approach to diagnosing, treating and surveillance Neuroendocrine Cancer patients with somatostatin receptor positive tumours.  I also wrote last year about another option called 64Cu, something already available in Europe, in particular Denmark.In another development which has been running for some time, a Ga68 variant called 68Ga-DOTA-JR11 has been in trial…
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Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 11 of my Living under COVID-19 series.  A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk .... if you missed it it's here. We have another 3 or 4 days of hot weather so it's bikes again soon. Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian's Wall on 31st May 2014. We were so happy and relieved to finish - went straight to the only pub in the village of Bowness for a pint of well earned beer  Lead picture is the view we had towards Scotland where we stayed that…
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Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI).  You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular enzyme and keeps tumors from making their own blood vessels,…
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Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to read the A to Z of Neuroendocrine Cancer What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down.  The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer.The drug is administered in oral form (tablet). The recommended dose for AFINITOR®…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 10) – A story of the Wall, Swans, Dundee and New Forest History

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 10 of my Living under COVID-19 series.  A story of the 'Wall', Swans, Dundee and New Forest History26th May 20206 years ago today, Chris and I set off an a 6 day hike across the 2000 year old world heritage site of Hadrian's Wall in northern England. It was an experience we'll never forget, not just for the long 84 mile slog but the natural beauty, the interesting places we visited and the people we met. We were raising funds for the local NET guys PLANETS Charity - co-founded by my surgeon (Neil Pearce) and interventional radiologist (Brian Stedman) and brilliantly ran by our friend and NET Patient Layla Stephen. I think…
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 9) – a story of cream teas, peaks and blue sky

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Episode 9 of my Living under COVID-19 series.  A story of cream tea, peaks, blue sky and more peaks!19th May 2020[caption id="attachment_18552" align="aligncenter" width="640"] In Brockenhurst, a New Forest town where animals mix freely with humans![/caption]Figure of eight bike ride yesterday around the outskirts of my town. 9 miles (still feeling the 23 miles from Saturday!). No photos, just a quick spin session. However, one of those Facebook memories came up from last year where we visited a nice town called Brockenhurst in the New Forest. Lovely little place smack bang in the middle of the National Park. The reason it caught my eye was a picture of an English…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 12th May 2020I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (….you should’ve seen the other guy). Bar the odd mandatory injection, I avoided nurses (….and boxing) for many years after that. But now ……Today is international nurses day. These guys have hit the headlines recently and many of us are dependant on them for ongoing care etc.I'd like to publicly thank all the nurses and healthcare assistants who helped me get better and brought me here today - and who continue to watch my back!Always thank…
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Ronny Allan:  Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still…
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Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

0 test, Patient Advocacy, Survivorship, test, TEST
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still…
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Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email "An unusual disposition of tumours" A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases for late diagnoses. Apart from the primary tumour invading nearby tissue/organs, the most common spread is the lymph nodes, these can take you from a localised Stage 1 to loco-regional Stages 2 and 3. Often the term distant spread infers metastatic disease (stage 4) to the liver but I had some lymph nodes 'misbehaving' much further away than that. After my first nuclear scan (In-111 Octreoscan) during my diagnostic workup in Jul-Aug 2010, two areas lit up - left axillary nodes (armpit) and…
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We Remember – A message of hope in the time of the Coronavirus!

We Remember – A message of hope in the time of the Coronavirus!

Inspiration
I really like this video because it covers the positives of the coronavirus crisis, despite the daily gloom. At the time of writing, it's clear things will get worse before they improve. However, this crisis will end sometime, hopefully soon; and we'll look back on this period with multiple emotions. Of course we will be sad about those who died and for the lives that were changed. But we will also look back fondly at how we dealt with these changes, the new ways of thinking, new outlooks, new friends, new relationships and new communities. Personally, I can't wait for this crisis to be a distant memory but we should all remember the positive things happening now and that will hopefully be maintained going forward. There will be new communities…
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COVID-19 and Cancer Treatment and Surveillance

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or stopped in NET?Surgery: Can/should surgery be canceled or delayed?Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?Lutetium Lu177 DOTATATE PRRT: Should PRRT be delayed if not yet started? Should the next treatment plan be postponed if in the middle of the planned PRRT course?Iobenguane I 131: Should iobenguane I 131…
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Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate to have survived metastatic Cancer for the last 10 years only be taken out by a stupid tiny virus because I forgot to wash my hands. Thus why I intend…
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Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email This is not medical advice and should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation's guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020 - see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general…
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Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Diet and Nutrition
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following:Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.Article 3 – ‘Gut Health’. This followed on from the first…
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Oral Octreotide using RaniPill™

Oral Octreotide using RaniPill™

Clinical Trials
Rani Therapeutics, a leader in oral biologics, has announced positive results from the Phase I clinical study of its orally-delivered version of octreotide, Octreotide-RP, a drug used in the treatment of acromegaly and neuroendocrine tumors. The Phase I study successfully achieved both its primary and secondary endpoints, demonstrating the safety and tolerability of Octreotide-RP, the RaniPill™ loaded with octreotide, and high oral bioavailability of the biologic drug.  The Phase I clinical study of Octreotide-RP was conducted in Australia with 58 healthy adult volunteers. The test group was comprised of both male and female subjects aged 18 to 55. Of the 58 participants, 52 were treated with Octreotide-RP, while a control group of 6 participants was given an intravenous injection of an identical dose of octreotide. Results of the study demonstrated…
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Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment,…
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Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email sharing this could help someone 2019 has been quite a year and my blog views are the highest they have ever been.  They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year.  Will try harder in 2020! (edit - COVID changed those plans)Things are so hectic I might need to think about more resources for my website/blog going forward.  Much of the effort in 2019 has been directed in building up my private group, the fastest growing NET group on earth and based on current size and growth rate, it will soon…
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Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. That must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell! The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused.…
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“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer. When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again…
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Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed.  Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis.  At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma - also delaying diagnosis.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux,…
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The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Edit:  September 2020.  I believe the flu shot is even more important in the era of COVID. This is an illness which typically spreads in autumn and winter. A major flu outbreak would not only overwhelm hospitals in the coming months (the so called "twindemic") but also likely overwhelm a person who might contract both at once.Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my immune system may be compromised and having got…
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Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials
What is PEN-221? Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors.  These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221. Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized upon binding to the receptor and linking a toxic payload to an SSTR2 agonist is a potential method to kill SSTR2-expressing tumor cells. PEN-221 is a conjugate consisting…
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Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials – ONC201 for Neuroendocrine Cancer (including Pheo/Para)

Clinical Trials
What is ONC201? A company called Oncoceutics is developing a novel class of safe and effective cancer therapies called imipridones. Imipridones have a unique three-ring core structure and selectively target G protein-coupled receptors (GPCRs), the largest class of membrane receptors and a common target of approved drugs that are underexploited in oncology. Despite being historically uncommon as targets in oncology, GPCRs control an array of critical prosurvival and stress signaling pathways that are often dysregulated in human cancer to favor cancer cell survival and propagation. The ability of imipridones to target GPCRs with a high degree of selectivity represents a novel opportunity in oncology that generates remarkably safe and effective therapeutics. ONC201, the founding member of this novel class of therapies, is an orally active, safe, and selective antagonist of…
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The Other 5 E’s

The Other 5 E’s

Inspiration, Living with Neuroendocrine Cancer
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of this story straight away. For those unaware of those 5 E's, read about them here. I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say "I can't" than it is to say "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So this is the story of the my daytrip at the end of summer (and pretty much…
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The Case of Justice Ruth Bader Ginsburg vs Cancer

The Case of Justice Ruth Bader Ginsburg vs Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email UPDATE 18th SEPTEMBER 2020RIP Justice Ruth Bader GinsburgUPDATE 17 JULY 2020Justice Ruth Bader Ginsburg said Friday that she had had a recurrence of cancer but had been undergoing chemotherapy that had shown “positive results”.  Justice Ginsburg, who is 87, said she had begun a course of chemotherapy on May 19, after a periodic scan in February followed by a biopsy revealed lesions on her liver.  She also stated that "Immunotherapy" first essayed proved unsuccessful, but the chemotherapy course is yielding positive results. She said a scan this month showed the liver lesions had been significantly reduced and that she is tolerating chemotherapy well.  Justice Ginsburg did not say where the tumours…
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Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials – Surufatinib for Neuroendocrine Cancer

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Update: December 30, 2020 - The China National Medical Products Administration has approved surufatinib for the treatment of patients with non-pancreatic neuroendocrine tumors. Read more here.  In China, the drug is known as Sulanda.An extremely interesting drug in the pipeline which has been featured at ENETS, NANETS, ESMO and ASCO.  – Company plans to complete rolling submission in the first half of 2021 –– The pivotal Phase III SANET-ep trial demonstrated surufatinib reduced risk of progression or death by 67%, extending PFS of non-pancreatic NET patients with an acceptable risk/benefit ratio –– The pivotal Phase III SANET-p trial demonstrated surufatinib reduced risk of progression or death by 51%, extending PFS of pancreatic NET patients with…
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Pancreatic Neuroendocrine Tumours – surgical decisions

Pancreatic Neuroendocrine Tumours – surgical decisions

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Background  I've written before about pancreatic NETs (pNETs), much of which has been on the awareness side of my advocacy work, particularly emphasising the differences with core Pancreatic Cancer (adenocarcinoma). Pancreatic NETs are quite difficult to diagnose and treat, some of that difficulty is due to the location of the pancreas and accessibility for surgeons and radiographers. It's not helped by the fact that most pNETs are non-functional making diagnosis more difficult as there is little clinical suspicion to scan, but also results in more late diagnoses. Although biopsies are possible, mainly via endoscopic ultrasound or laparoscopy, it can still be difficult to reach.  In some cases biopsies are not…
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New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

New Radiotracer Can Identify Nearly 30 Types of Cancer – SNMMI – 68Ga-FAPI PET/CT

Clinical Trials, Living with Neuroendocrine Cancer
[caption id="attachment_15259" align="aligncenter" width="840"] see citation below[/caption] New radiotracer can identify nearly 30 types of cancer (including NETs). Future potential for therapeutic application. This is a different type of radiotracer being currently being used in the approved market for NETs.  It's availability and timeline is not yet known. Date: June 7, 2019 Source: Society of Nuclear Medicine and Molecular Imaging Summary: A novel class of radiopharmaceuticals has proven effective in non-invasively identifying nearly 30 types of malignant tumors. Using 68Ga-FAPI PET/CT, researchers were able to image the tumors with very high uptake and image contrast, paving the way for new applications in tumor characterization, staging and therapy. Red more here. https://www.snmmi.org/NewsPublications/NewsDetail.aspx?ItemNumber=31744 Watch this space for more data on availability timeline and what type of NETs were used in the trial…
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LUTATHERA (PRRT) – NETTER 2 Clinical Trial for Grade 2/Grade 3 Neuroendocrine Neoplasms

LUTATHERA (PRRT) – NETTER 2 Clinical Trial for Grade 2/Grade 3 Neuroendocrine Neoplasms

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Brief SummaryThe NETTER-1 trials led to the approval of Lu177 (or Lutathera), more commonly known in the community as Peptide Receptor Radio Therapy (PRRT).  This led to an explosion of availability across the world but many gaps in service remain.Many PRRT spin off trials are in the pipeline looking at different types of PRRT, mainly using slightly different radionuclides and techniques.  However, NETTER-2 builds on the success of the approved version formally known as Lutathera.The aim of NETTER-2 is to determine if Lutathera in combination with long-acting octreotide prolongs PFS in GEP-NET patients with high proliferation rate tumors (G2 and G3), when given as a first line treatment compared to…
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Neuroendocrine Cancer: No one gets it until they get it

Neuroendocrine Cancer: No one gets it until they get it

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', they have real difficultly understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas.  Unlike…
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From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy
I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was "The shock effect never wears off".  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity.  Hence referral going forward as 'Patient E'. I just felt that someone somewhere might learn something…
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“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

“I Knew There Was Something Wrong, But I Didn’t Know What” — A Nurse Shares Her Cancer Story

Inspiration, Living with Neuroendocrine Cancer
Judy Golz is a retired registered nurse — she’s also a neuroendocrine cancer survivor.  Like many nurses who get cancer, their experience in working in the healthcare industry possibly helps get a quicker diagnosis, possibly because they can recognise symptoms and likely differential diagnoses and it possibly helps knowing how the healthcare system works. But with uncommon and complex diseases, it's not always that straightforward, even for a nurse or any other healthcare professional.  But Judy makes an excellent point about the quantity and quality of medical information now out there, including for Neuroendocrine Cancer and suggested she would be in a better place for self-diagnosis today. Two things spring to mind about this story. Neuroendocrine Cancer is such a complex disease, it can often be hard for healthcare professionals to…
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Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled "Letter from America".  This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through…
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Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Proton Pump Inhibitors (…..and H2 Blockers) the NET Effect

Treatment
Proton pump inhibitors (PPIs) reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid related conditions such as: Esophageal duodenal and stomach ulcers NSAID-associated ulcer Ulcers Gastroesophageal reflux disease (GERD) Zollinger-Ellison Syndrome - ZES (note this is a syndrome associated with a functioning duodenal or pancreatic NET known as a Gastrinoma) They also are used in combination with antibiotics for eradicating Helicobacter pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum for eradicating…
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Clinical Trial: Intra-arterial Lu177 (PRRT) for Neuroendocrine Cancer liver metastases (LUTIA)

Clinical Trial: Intra-arterial Lu177 (PRRT) for Neuroendocrine Cancer liver metastases (LUTIA)

Clinical Trials
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The treatment of liver metastasis is a common approach following a metastatic diagnosis or discovery of liver metastasis downstream via re-staging. In addition to surgery, there are several liver directed therapies available via embolization techniques. This comes in several flavours:1. Bland liver embolization - a minimally invasive technique which simply blocks the blood supply to the liver tumours in an attempt to reduce or kill those tumours. Sometimes called Hepatic Arterial Embolization or HAE.2. Chemotherapy liver embolization - as above but adds in some cytotoxic chemo to the mix. Sometimes called Trans Arterial Chemo Embolization or TACE.3. Radioembolization is a minimally invasive procedure that combines embolization and radiation therapy to…
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Breath test with the goal of detecting multiple cancers – ready to start trials

Breath test with the goal of detecting multiple cancers – ready to start trials

Clinical Trials
While it's a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It's possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks. The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses. I will keep this article live and track developments. Read more by clicking here. Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also…
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Neuroendocrine Cancer: a needle in a haystack?

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established…
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Neuroendocrine Cancer Clinical Trial – Lutetium-177 OPS-201 (Satoreotide)

Neuroendocrine Cancer Clinical Trial – Lutetium-177 OPS-201 (Satoreotide)

Clinical Trials
What is Lutetium-177 OPS-201? This is a 'next generation' Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author's note, I'm guessing but it could be a variant of Lanreotide).  It was once named JR11. What's the difference to the current approved therapy?  Conventional PRRT (e.g. Lutathera, Lu177 Dotatate) is based on a somatostatin receptor 'agonist' approach, whereas 177Lu Ops 201 Satoreotide is a receptor 'Antagonist'.  The differences are quite technical but in the most layman terms , the antagonist has the capability of attaching (binding) to more receptors, including those in a…
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RonnyAllan.NET – Community Newsletter Covering November 2018

RonnyAllan.NET – Community Newsletter Covering November 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for November 2018 NET News 1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million 'reach' on twitter in ONE WEEK straddling NET Cancer Day (see below) - just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter.  So I thought I'd mention it instead. Mind you, every day is NET Cancer Day on my social media…
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Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship
I have a lot of be thankful for - I'm still here for starters! BUT ......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for! Thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET…
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Pancreatic Cancer vs Neuroendocrine Tumours of Pancreatic Origin

Pancreatic Cancer vs Neuroendocrine Tumours of Pancreatic Origin

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows: 1. They are totally different cancers despite an anatomical relationship.  Although they can share a similar presentation, they can have different signs, different treatments, and vastly different prognostic outcomes. Anyone looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be. (particularly with the prognostics). See more…
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RonnyAllan.NET – Community Newsletter Covering October 2018

RonnyAllan.NET – Community Newsletter Covering October 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for October 2018 NET News Several headlines covering the past month: 1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don't seem very 'patient' friendly. 2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses.  A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new…
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Neuroendocrine Cancer – Clinical Esoterica

Neuroendocrine Cancer – Clinical Esoterica

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer.  Some continue to struggle after.The cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux,…
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How to Talk to a Cancer Patient Without Being a Complete Twit

How to Talk to a Cancer Patient Without Being a Complete Twit

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy
I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'.  Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a 'pity party' and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don't want pity.…
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