Ronny Allan Newsletter – 1st January 2021

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Happy new year everyone!

Overview

Just 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 damaging than the first in terms of human cost.  My local area is now in the highest tier of restrictions and I have been instructed to remain at home only going out for exercise or medical appointments (pretty much no real change to my hunkering down tactics).

Still….. there is more hope in UK with the approval of a second vaccine, the Oxford/AstraZeneca which has much less logistical issues than the Pfizer one. I’m hoping to get my dose in the next 8 weeks but there will still need to be restrictions going forward.

December update follows

The newsletter is now divided into several sections:

1. External news of interest.  A shortlist of things I picked up on my social media travels.

2. A bit of inspiration.  If you read nothing else, read this bit! 

3. External projects – what I’ve been up to away from my own social media but also related to NETs.

4. Coping with Lockdown & Personal Summary.

5. December blog activity.

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

7. Summary and look forward.

External news of interest

News about Neuroendocrine Cancer continued in December 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 December 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. COVID Vaccines.  The month started with at least 3 vaccines looking good for approval soon and although this does not treat Neuroendocrine Cancer, it does a big effect on how we live with cancer, thus why I’m including it  On 2nd Dec, UK approved the Pfizer vaccine and many countries have done so since.  On 30th December, the UK approved a second vaccine, AZD1222 with a rollout due to begin on 4 Jan 2021. The same pharma is working on something aimed at people with a weakened immune system who cannot be vaccinated. The first patient to trial the drug is from UK – click here.  The US also approved the Moderna vaccine but I don’t yet know any other country to do so.  Read a summary here.  I will be accepting whatever vaccine I’m offered in my turn.  Read why here.

2. MEN2 patients – FDA approves GAVRETO.  Great news for MEN2 patients, FDA Approval of GAVRETO™ (pralsetinib) for the Treatment of Patients with Advanced or Metastatic RET-Mutant and RET Fusion-Positive Thyroid Cancer. Read more here.

3.  Measuring PRRT response.  A fascinating article from nuclear radiologists. The question of evaluating responses to PRRT starts with selection of those likely to benefit. The content is more than just the paper title. Click here to read.

4.  At last a clinical trial of PRRT for Lung NETs.  Lung Neuroendocrine NETs are a fairly common type within our heterogenous grouping of cancers. Most treatments you see are for Gastroeteropancreatic NETs (GEPNETs) which excludes NETs in the bronchopulmonary region. So it’s good to see the Lung guys get a new trial comparing efficacy of PRRT against Everolimus (Afinitor), the latter is approved for Lung NETs but only for non-functional.  Read more here about the trial here as it’s recruiting soon.

5.  Neuroendocrine Neoplasms with unknown primary.  This is an exciting development because a study now claims an algorithm called NEN-ID predicts the origin of tumor samples with high accuracy (> 95%). The study concluded that DNA methylation-based prediction model can be used in the workup for patients with neuroendocrine tumors of unknown primary. The algorithm also gives indication of inherited predisposition syndromes von Hippel–Lindau disease (VHL) and multiple endocrine neoplasia type 1 (MEN1)Click here to learn more.

A bit of inspiration

I was so happy to get out into the local forest last week, bright sun, a tad cold but the colours were amazing.  Your tumours might not need a serotonin boost but your brain does!  See the pictures of this adventure here.

External Projects

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

  • December was a quite month although I just send off a 10 second video clip which I’m hoping will be included in a collage of clips by WEGO Health.  However, I’ll leave my two video presentations below in case you’ve not seen them yet.
  • 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. My video is here.
    Click picture to watch video
  • I made a World NET Day video for Neuroendocrine Cancer UK (formerly known as NET Patient Foundation) – The subject is “How to become your own expert”.  Click here.
    Click the picture to watch video

Coping with lockdown/Personal Summary

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.  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.  

Personal Summary

My annual consultation on December 9th went OK.  I appear to be stable in terms of the cancer but I have spikes in Triglycerides which is under investigation.  My forward plan is a Ga68 PET sometime in the middle of next year (3 year routine SSTR PET surveillance).  Spookily, this consultation happened on the 10th anniversary of my very first Lanreotide injection. See that here.

December Blog Activity

Despite it being a traditionally quiet month on social media, I managed to write or update quite a few blog posts, hopefully another sign of getting back to normal.  I did, however, pass a major milestone at the beginning of December.  The total number of views of my blog reached 1.5 million.  A small celebration was held by the production of this post:

Thanks a MILLION …and another half! – Ronny Allan – Living with Neuroendocrine Cancer




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:

A 2020 blog review (RonnyAllan.NET) – Ronny Allan – Living with Neuroendocrine Cancer

Click on the picture to view

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

Click on the picture to view

Somatostatin Receptor Positive Advanced Bronchial Neuroendocrine Tumors – PRRT vs Everolimus

Click on the picture to view

I will take the vaccine, no question

Click on the picture to view

Neuroendocrine Tumours – now you see them, now you don’t!

Click on the picture to view

 

The Challenge of Evaluating Response to Peptide Receptor Radionuclide Therapy in Gastroenteropancreatic Neuroendocrine Tumors: The Present and the Future

Click on the picture to view

The A to Z of Neuroendocrine Cancer  Finally got to Z but a lot of validation and linking up is still required. Work in progress but very usable.  I do hope you’ll support this database; it’s taken weeks of work!

Click on the picture to view

Social Media Update

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, especially 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.

Pinterest.  Did you know I was also on Pinterest? Point, click, read. Easy-peasy lemon squeezy  Click here or the photo

Point, click, read.


Facebook.   
Please like both pages, it really helps.  (do not unlike by mistake!).

Site 1: Neuroendocrine Cancer – click here

Site 2: Ronny Allan – click here

Neuroendocrine Cancer Definitions.  I continue to work on my A to Z facility and making progress, around 90% complete, although I now completed the definitions I already had recorded as ‘tags’.  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. 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 the picture to enter the database

Some posts needing love

Neuroendocrine Tumor Drug Clinical Trial – Cabozantinib (includes news on Pheochromoctyoma and Paraganglioma)More stats4,874
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?More stats4,873
Neuroendocrine Cancer: Diagnosing the UndiagnosedMore stats4,845
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.More stats4,760
Palliative Care – it might just save your lifeMore stats4,633
Chemo or not Chemo – that is the question More stats4,573
Neuroendocrine Cancer: a needle in a haystack?More stats4,539
Diagnosis – I’m no longer in controlMore stats4,518
‘Chinese Dumplings’ and Neuroendocrine CancerMore stats4,416
Neuroendocrine Cancer – surveillance and follow upMore stats4,413
Live Blog Stats
  • 1,667,233 hits

Thanks for reading.

Ronny


I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

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

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