Ronny Allan Newsletter – 1st February 2021

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Overview

Honestly, there is a smile under that mask!

2021 is now underway and January has been an interesting month.  The highs are the approval of more vaccines and I had the first of my own vaccinations on 31st January – click here to see the announcement on my Facebook page. The lows are slightly depressing growth figures on my biggest Facebook public page and less than normal blog figures for the month of January. I’ll need to work on that in February and with your help, I can catch up.  I’m putting it down to COVID-19 malaise!

January 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 NET 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 January 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 January from my google alerts, from direct contact or from twitter (the latter is a key source for me to hear about what’s happening).  There’s actually been a flurry of NET stuff appearing which is a real positive for the rest of the year. 

1. Pancreatic Sugery – decisions on whether to cut or not to cut.  Great article featuring Dr James Howe, well known NET surgeon.  I incorporated it into my article with the same subject heading.  Read more here

2. To a certain extent, Neuroendocrine Neoplasms (NENs) continue to be an Immunological desert.  There is a great article incorporated into my Immunotherapy post explains the issues nicely. Read more here. See bottom of the post.  

3.  Treatment Outcomes of Well-Differentiated High-Grade Neuroendocrine Tumors.  My “High Grade” article now contains a small study outlining the treatment differences between well and poorly differentiated high-grade tumours.  More studies are needed to work out optimum treatment plans for well differentiated Grade 3 NETs.  Read the article here 

4.  PRRT for High Grade NENs.  Good to see more studies into the possibilities of PRRT with high grade.  You can read a great update of how this is progressing inside my general PRRT article.  Read here 

 

A bit of inspiration

Despite the terrible news continuing in the press for many, the vaccines are being rolled out, but it will take time.  Nonetheless, this is a positive and while it will not mean a person can suddenly go about their business as normal, each vaccination takes up a step forward to getting out of this mess we’re in.  It’s been a long road and since last March, I don’t believe many people actually thought we would still be in major lockdown in the second month of 2021. The light at the end of the tunnel is brighter and we now have HOPE.  To play my part in the recovery, I was happy to get my first vaccine on 31st January 2021 – read more here

World Cancer Day

This happens annually on Feb 4th. Check out my post here plus join my perpetual online event 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!

  • Still waiting to see 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 made some videos some months ago for Ipsen and they have now been published. The aim was to give my patient view on coping with COVID as a NET patient. You can watch these short videos here
  • Older job but important piece of work for me.  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
  • Older job but important piece of work for me. 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 NET Summary

Personal NET Summary

I appear to be stable in terms of the cancer and scheduled for a Ga68 PET/CT in July in London.  Working with my dietitian to get some of my vitamins into normal range plus but I have spikes in Triglycerides which is under investigation.

Coping

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 2020/2021 on my page Ronny Allan.  Already planning for significant visual story campaigns for 2021 due to demand for this sort of theme.  Thanks for the inspiration.

Walking one thousand miles in 2021  

As some of you know I set myself a target of 1000 miles of walking in 2021. This is part of a bigger program in UK and I thought it was something I was capable of doing. There are several spin-offs including my own fitness, my own mental health (and that counts for Mrs A too) and provides some input to writing motivational travel and fitness posts for others to read.  In January, we cover a round 100 miles which is 15 miles over our target, so we have some researve in case of a lean time in the future when we are unable to participate sufficiently.

 
 

My 12 lockdown episodes

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 allowed out for some exercise and other essential trips such as doctors appointments and shopping for essential items.

The second update is nice walk to a local beauty spot and back.

The third update is a potpourri of events including hair issues, broken tooth and my first COVID lockdown injection covering 14/15 Apr 2020.

The fourth update is a story of bikes, ponies, wisteria and Vitamin D covering 16th – 21st Apr 2020.

The fifth update  A story of greenery, sun, adventure and Irrfan

The sixth update is a story of footpath etiquette, sheep, donkeys and dopamine covering 30th Apr – 3rd May 2020.

The seventh update is a story of swans, cycling, VE Day and my 124th monthly cancer treatment covering the period 6th – 11th May 2020.

The eighth update is a story of nurses, trees and Canada covering the period 12th – 17th May 2020.

The ninth update is a story of cream teas, peaks and blue sky covering the period 18th – 23rd May 2020.

The tenth update is a story of the Wall, Swans, Dundee and New Forest History, covering the period 26th – 29th May 2020.

The eleventh update is a story of Walking the Wall, coping strategies and the London Ga68 PET, covering the period 30th May – 5th June 2020.

The twelfth update is a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’, covering the period 7th – 15th June 2020. 

January 2021 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 had an unusual spike in my Paul Hunter tribute article and further checks indicated this activity was happening outside of the NET community and it happened at the same time as the annual Snooker Masters competition happening in UK.  The trophy for this international event in the snooker world is called the Paul Hunter Trophy – read more here.  Amazing piece of awareness.

In case you missed any new posts published or subject to a major update in January 2021, check them out below:

Lanreotide and Keytruda – the PLANET study (NCT03043664)

Currently trending on RonnyAllan.NET

The Invisibility of Rectal NETs – do the math

And read my January 2021 newsletter here in case you missed it – click here

 
 
 
 

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. 
 I have one of the biggest private Facebook support groups in the world, you can join below – see green button. 

Please also support my public 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 Cancer – Clinical Esoterica 19,246
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption 19,111
Surgery for Neuroendocrine Neoplasms – to cut or not to cut? 9,547
Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought? 9,541
Neuroendocrine Cancer – the diarrhea jigsaw 8,651
I bet my flush beats yours? 8,305
Don’t be underactive with your Thyroid surveillance 4,860
Palliative Care – it might just save your life 4,783
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. 4,772
Chemo or not Chemo – that is the question  4,732
 
 
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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’

Disclaimer

My Diagnosis and Treatment History

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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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patients included

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

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3 thoughts on “Ronny Allan Newsletter – 1st February 2021

  • Isabel

    What the previous person said! Seriously, Ronny (and I’ve said this before), the rolling updates on NEN treatments and diagnostics are in themselves therapeutic. I’m the type of patient that needs facts, the truth, in order to cope with my illness and your posts are an important weapon in my arsenal. Delighted to see you getting your covid shot! I live in Spain and probably won’t be receiving it till late winter/early spring. Till then, I’m more or less sheltering in place, doing laps around the garden and walking the dog in the evenings. Onwards!

  • Evie Ferris

    Thanks for your excellent newsletter! I am a grade 3 well differentiated, metastatic patient and I so appreciate your research and articles on this rare category. Thank you and best wishes from California! Evie

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