RonnyAllan.NET – Newsletter 1st July 2020

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Coping with lockdown

During 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 tested accordingly. You can read this COVID-19 diary by clicking here.

Things must be looking up as I’ve had a haircut. 

June Blog Activity

I seem to have managed to write quite a few blog posts in June, more than ever.  Things must be getting back to normal.  If case you missed any, check them out here:

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of

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Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Whenever I post about a new trial or study, some people get excited without understanding that these new treatments and capabilities can very often take

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Blog review and top 10 for 2021: RonnyAllan.NET

I should be happy with over a quarter of a million views in 2021 but I’m not!  Like 2020, my figures are down on previous

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Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

With Neuroendocrine Cancer patients, the mention of “diarrhea” is a topical subject.  There’s the usual claim that it’s caused by carcinoid syndrome and for some

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177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

This is all the information available and further details to follow if any is published.  Remember, this is not yet an approved treatment, nor is

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Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

It’s known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved

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20th November 2010 – feeling perkier

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th –

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Do we need a new model for Carcinoid Crisis in NETs?

(so called) Carcinoid Crisis is one thing that tends to raise concerns in patients and has been bubbling away in NET centres and in patient

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A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Some of the key differences between Lanreotide and Octreotide long-acting are:1.  Octreotide long-acting needs constituting prior to administration – Lanreotide comes prefilled.  2. Octreotide long-acting

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Routine Living

Despite some fairly big relaxations to the UK lockdown rules, I have not changed my cautionary approach too much, still staying away from towns and shopping.  However, it’s great that our family can now visit us at home providing we practice good social distancing outside the house. We’ve since had a few visits and vice versa.  

We are now in serious holiday mode but local days out plus a few days here and there.  Currently looking at half a week up on the east coast of England exploring the coast of East Anglia. 

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 is currently 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. 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 – I now have a structure with many definitions already linked to at least one blog post.  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

External work

  • Early in the lockdown, I was interviewed over the telephone by a Pharma company after writing an article about their product currently in clinical trials. This was a surprise call but was happy to help. You can read the interview above in one of the posts released in June or just click here
  • 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’ve been invited to take part in an online NET conference organised by the Middle East NET Society (MENETS). This is a virtual online event where the speakers will be well known NET Specialists and patients. I think my talk is centred around “Patient Orientation”. MENETS is in the process of validating schedules and will be ready to publish the initial agenda by the end of July 2020. In the meantime, you can save the date – click here for more details. Very grateful to my friend Mike Rosenberg for inviting me to speak and for adding my website alongside other illustrious organisations on the MENETS website. I met Mike in Barcelona – he still owes me a Creon!

Thanks for all your support in June 2020, it’s really much appreciated.

Looking forward to a much safer July.   Go on, try the share button!

Ronny

 

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