Ronny Allan Newsletter 1st October 2020

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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 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

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 I picked up during September 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. NET Research Foundation conference Oct 10th.  The NET Research Foundation is planning a virtual NET Conference on October 10th. I find the NET Research Foundation’s presentations to be top quality with swift publication of a copy for those unable to tune in on the day.  Read more here.

2. Seneca Valley Virus (SVV-001).  This virus trial was active last year but was halted. It now appears to be reactivated according to Seneca Therapeutics, Inc., a clinical-stage biopharmaceutical company dedicated to the development of oncolytic immunotherapeutics for cancer based on Seneca Valley Virus (SVV-001). Seneca announced the receipt of positive guidance from the FDA on the reactivation of the SVV-001 IND and Phase I/II protocol. The Phase I/II study will be in combination with a checkpoint inhibitor and include patients with either neuroendocrine tumors (NET) or carcinomas (NEC). The Phase I/II clinical study should begin during 2nd quarter, 2021.  Read more about Oncolytic virus’s for NETs – click here

3. Surufatinib continues its march to success with news that the extra pancreatic (‘extra’ just means anywhere except the pancreas) is moving further towards formal approval. The approval request for pancreatic NETs is already with US FDA with plans to also submit to the European Medicines Agency (EMA).  Read more by clicking here

4.  RBG.  RIP Ruth Bader Ginsburg who died 18th September. I’ve been receiving messages about her cancer type and “RGB Neuroendocrine” is an internet search which found my article. There’s no evidence available in print form she had any type of Neuroendocrine Cancer which has been subject to speculation in the community. Here’s my running post – here

5. New Nuclear PET Scan.  September 4th brought breaking news from US FDA who approved Detectnet™, an alternative nuclear scan for Neuroendocrine Tumours (somatostatin receptor positive) based on the radionuclide 64Cu.  I had been tracking this one here

6. PRRT available in New Zealand. I’ve been following the New Zealand fight to get PRRT available in country – first heard about it in 2017. Glad to see this news although under unusual circumstances. The Ministry of Health, Auckland District Health Board and other agencies have worked to provide Peptide Receptor Radionuclide Therapy (PRRT) in Auckland on an interim arrangement. Patients usually travel to Melbourne for the treatment which is funded by the ministry.  So happy for my NZ group members and followers of my social media accounts. Read more here

A bit of inspiration

One of the most engaging posts of 2020 was the birthday of Kathryn Ely O’Brien who was diagnosed with NET 42 years ago and is supported by her daughter Patty over in my private group. She just got her most recent CT Report last month and thankfully no notable changes.  This lady is amazing, she lives alone and drives to grocery, doctors, pharmacy and to her weekly hairdresser appointment. After her last shot, she went into her garden to do some weeding! So many people wished her a happy birthday – what an inspiration!  And thanks to her daughter Patty for providing the lovely photos you can see by clicking here.

I was also inspired by a patient quote in response to my new “Invisible Illness” post and I thought it resonated with my own situation and indeed with many others.   Thanks to Cindy for this great observation.

External Projects

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

  • In September I took part in a patient’s advisory board (PAB) for a leading pharma. I will publish any detail I’m allowed later.
  • I made some short patient videos about coping with living under COVID-19. If they get published, I’m sure you’ll get to see it. Stay tuned.
  • I took part in a podcast interview for a US based patient support site – awaiting publication. Stay tuned.
  • 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.  Incredibly grateful to my friend Mike Rosenberg for inviting me to speak. You can see copies of slideshows here
  • I’ve been invited to make 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 post it for your perusal in slower time on my own social media. 

Coping with 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

September was a quieter month outdoors mainly due to weather.   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.  

Which made me think of this article but twice the number!

🎼🎼🎼🎵🎵🎵 and I would walk 500 miles 🎵🎵🎵🎼🎼🎼

September Blog Activity

I managed to write quite a few blog posts, an above average amount and this is me just me getting back to normal. In case you missed any, check them out here:

Posts published in September 2020 – click on the pictures to view:

“I’m still vertical”

Flower power and serotonin




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’ 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.

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!

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 database

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

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

Go on, try the share button!

Ronny

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