Ronny Allan Newsletter 1st November 2020

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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 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 away from my own social media but also related to NETs.

4. Coping with Lockdown.

5. September blog activity.  In case you missed them – I was quite active in September.

6. Website and social media updates from RonnyAllan.NET.

7. Summary and look forward.

8. Some posts needing love.

External news of interest

News about Neuroendocrine Cancer is starting to pick up and this has been reflected in some of my newer blog posts and miscellaneous posts on my Facebook pages.  Here’s what I picked up during October 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. Neuroendocrine Cancer UK Summit.  This online event looks from Neuroendocrine Cancer UK looks great – check out the agenda. I’m honoured and excited to be presenting a short video entitled “Becoming Your Own Expert”. The virtual sessions will be available to watch on the 7th and 8th November 2020 if you’ve registered. The NCQT (expert panel questions) event will be available to watch live on Tuesday 10th November 2020 from 6:00pm – 7:00pm. Please note that if you are unable to join then the full programme and Q&A recording will be made available after the event on our website. I’ll also publish on my own social media. The brochure link is here.

2. ITM Isotopen Technologien München AG and Isogen signed a formal supply arrangement to provide a reliable supply of Lutetium-177 to the world’s health care system using Bruce Power reactors as a key supply source. ITM Medical Isotopes GmbH, based in Munich, Germany, is a subsidiary of the biotechnology and radiopharmaceutical group of companies Isotopen Technologien München AG (ITM), and Isogen is a joint venture between nuclear companies Framatome and Kinectrics. The arrangement was made possible through Isogen’s partnership with Bruce Power, Canada’s only private sector nuclear energy generator, in combination with ITM’s know-how in the development of medical isotopes, and will ensure reliable, consistent supply of medical isotopes for use in targeted therapies for cancer patients around the world for the next 15 years.  The agreement, which follows the signing of a Memorandum of Understanding (MOU) in November 2019, defines the use of the new Isotope Production System (IPS) to be deployed in conjunction with ongoing Life-Extension work at the Bruce Power site. The IPS, designed and manufactured in Ontario by Isogen, offers functional flexibility and will support the future production of other isotopes in addition to Lutetium-177, providing the world’s health care system with a stable supply of isotopes for decades. This is a sign of strong investment and foundation into the future of PRRT.  I’m known to ITM AG and was recently featured in one of their internal company newsletters (click here). Also check out the COMPETE trial sponsored by ITM AG.

3.  Paul Hunter.  A relatively unheard of celebrity but I researched his case in some depth and came up with this article as a tribute to the late Paul Hunter, World Champion Snooker player and Neuroendocrine Cancer patient who sadly died aged 27 in 2006.  Read the tribute here.

4. Neuroendocrine Cancer UK – what they are and what they do.  This was pushed out by NCUK in October and my guess is that it’s due to the confusion online with a similar branded UK organisation working at a much lower level and a much narrower scope. Read this here.

5.  Small Bowel podcast from NET Research Foundation#NETwise podcast, learn about Neuroendocrine Tumours in the small bowel: how they grow and how they can be treated. Plus, new research on small bowel NETs in interviews with NET specialists Drs. Dan Halperin and Neena Vijayvergia.  Read this here

A bit of inspiration

I’m giving you my own story this month as it was my birthday on 30th October managing the dizzy heights of 65 years old.  I wrote a whole article about it – Piss off cancer, I’m 65

External Projects

Away from my own social media activity, I’ve been extremely busy elsewhere and do not understand how I find the time!

  • I was a presenter at the online NET conference organised by the Middle East NET Society (MENETS). This was a virtual online event where the speakers were well known NET Specialists and for a change – patients and caregivers.  You can watch my presentation by clicking here.  Incredibly grateful to my friend Mike Rosenberg for inviting me to speak. You can see copies of slideshows here.  You can check out the other videos here (any that won’t play is simply because the presenter has not yet given permission for it to become public).
  • I had a one hour call to US to help a doctor understand the patient view of Neuroendocrine Cancer.
  • I made a World NET Day video for Neuroendocrine Cancer UK (formerly known as NET Patient Foundation) – this will be broadcast on the weekend of 7/8 Nov leading up to World NET Day. I will of course also post it for your perusal on my own social media.

Coping with lockdown

Looks like people in UK area heading for a second national lockdown.  Mental health can be as important as physical health in times of stress and anxiety, so I continue to take to the outdoors to tell my story of how I cope. 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 tested accordingly – you can read this COVID-19 diary by clicking here. I also chronicled a series of adventures after coming out of my own self-imposed lockdown.  This can be found by clicking here (final episode with the other episodes linked inside).  And I’ve been continuing that outdoor exercise them through 2020 on my page Ronny Allan.

October was a quieter month outdoors mainly due to weather although I did manage a short holiday and some nice walks.   I did get my flu jab though – this is something I think is important for me as a person with a history of chest infections and cancer.  COVID-19 could be a tipping point if I had all 3 issues.

Already planning for visual story campaigns for 2021 due to demand for this sort of theme.  Thanks for the inspiration.  I’m going to attempt walking one thousand miles in 2021 – stay tuned for news.  

October Blog Activity

I managed to write quite a few blog posts, hopefully a further sign of getting back to normal. In case you missed any, check them out here and they also include older ones with a major update:

Click on the pictures or blog titles to view:

Who needs a gallbladder anyway!  This is quite an old post but updated with better data.  Many people have their gallbladder removed to prevent side effects from long term use of somatostatin analogues.

I bet my flush beats yours.  Another old post but with a major addition to clarify flushing due to other endocrine reasons and separately that which is invoked by (so called) carcinoid syndrome.

Paul Hunter – Snooker champion and Neuroendocrine Cancer patient. Died 9th October 2006 – My tribute to Paul Hunter.


Serotonin – it’s a no-brainer.  Focus on serotonin in he brain and why it’s much different to the serotonin in relation to hormonal syndromes.

Early diagnosis of Stage 4 Cancer! – strange as it seems, it appears you can have an early diagnosis of stage 4 Neuroendocrine Cancer.  Read more inside.

Piss off cancer, I’m 65.  – A celebration of my 65th birthday on 30th October.

Website and Social Media updates

Website. Some of you will also have noticed a change in the layout of my website to include more menus for easier navigation and more sharing buttons to help you share what you like and find useful for others. Thanks if you’re using them already. If you wanted to practice, you’ll see them at the top and bottom of this newsletter – share away!

Twitter. I’m quieter on twitter which I’m finding quite depressing – I hadn’t realised how many trolls there on that medium but I guess many people remain frustrated by COVID-19 and many other political issues. Even worse, I had to block certain NET related accounts which were affecting my mental health.  Still sharing my twitter newsletters though – sign up here.  Am looking for twitter users who would like to provide mutual support for like minded campaigns. Message me please.

Email Newsletters.  I’m still learning how to release newsletters like this one plus other ad hoc stuff, I should have that in place by the next monthly iteration – look out for a new email template, then you’ll know!  You can sign up for these newsletters in the form elsewhere in the side or bottom of the post – it takes around 5 seconds!  I also have my twitter newsletter in place and you can subscribe to that here.

Instagram.  Did you know I had an Instagram account and mostly use it for posting inspirational scenic pictures!   Check it out here.

click here to follow me on Instagram

Facebook.   My oldest page reached a 10,000 milestone in October which was a boost!  

Neuroendocrine Cancer Definitions.  I continue to work on my A to Z facility and making progress, around 70% complete.  It’s quite usable if you just wanted to find an article containing a particular term. I’m currently getting rid of unwanted terms and updating new ones to link to my website.  Try it out, you might be surprised how useful it is despite its ‘in construction’ condition. In the database, click a term and it will currently take you to the posts containing that ‘tag’ and where I’ve populated so far, a short explanation. The A to Z of Neuroendocrine Cancer

Click on the picture to enter the definitions databas

A look ahead

We have the usual November 10th ‘zoo event’ taking place, I might schedule my own posts and have the day off due to the stress of another year of opportunity for much needed change is missed.  However, a shining light is the Neuroendocrine Cancer UK online videos on 7th/8th Nov followed by their ‘ask the expert’ broadcast on 10th Nov.   I might also celebrate the 10 year ‘cancerversary’ of my big surgery on 9th/10 Nov 2010.  And I’ll be reflecting on my 19 day hospital stay in that same month.

Thanks for all your support in October 2020, it’s much appreciated

Looking forward to a much safer November but things are looking gloomier.

Newsletter

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Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Click picture above to enter the A to Z repository from Ronny Allan

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Please Share this post for Neuroendocrine Cancer awareness and to help another patient

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