Irrfan Khan, Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of Pi, Jurassic World, The Amazing Spider-Man, has been diagnosed with a Neuroendocrine Cancer.
What type of NET?
Irrfan released information on 19 June 2018 indicating it was a high grade Neuroendocrine Cancer – although there is no detail of the ‘differentiation‘ that would indicate a ‘Neuroendocrine Tumour’ (NET) or a ‘Neuroendocrine Carcinoma’ (NEC). There have been no confirmed reports about the primary location. Read his “Note from London” here
I’m sure we all wish the best for him.
Where is he being treated?
Irrfan initially said he would be travelling “overseas” for treatment. Fox News (USA) said that “he hasn’t elaborated on his treatment plan, though he did say he would be treated somewhere outside the U.S.” This has been contradicted by other online sources in India claiming he will be treated in USA. However, there are now firm reports he is in London for treatment by a London based NET Specialist. He has posted on Instagram from “The Dorchester” (lead picture), and his announcement on 19 June 2018 was entitled “A note from London”.
Is this generating awareness of NETs?
Yes and we in the community should be thankful to Irrfan for going public. However, initially, the news resulted in a flurry of items about Neuroendocrine Tumours (NET), some accurate, some not so accurate. Many commentators made assumptions of a brain tumour based on the ‘Neuro’ part of the word Neuroendocrine, this was dismissed by Irrfan in his initial tweet statement.
I noted a 3000% increase in blog hits from India since the news hit. I’ve had many google alerts since the announcement was made and they all mainly contain simple facts. Some commentators have done their own research and are interpreting and then printing many strange things which are wrong about NETs. It follows that some of the awareness being generated is not the highest quality we should expect. However, this article gives a good insight into how NETs are managed on India.
What happens next?
This article will be kept live as I hear more news of his diagnosis and treatment.
I am totally astonished to have been able to accumulate 500,000 (half a million) views of my blog. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian’s Wall with my wife Chris. I never for thought for one minute I would still be doing it today and accumulate over 11,000 followers across all my social media sites, from all over the world.
Can’t stop, won’t stop. Onwards to 1 million views for Neuroendocrine Cancer awareness.
My key aims are international level awareness, advocacy, campaigning, and support for NET patients via all my social media accounts. I realise I’m not your regular NET advocate and I do things differently. However, I’m fairly certain that has played a part in getting to this stage.
My main sites are here:
Blog – ronnyallan.NET – 500,000 blog views as at 7 March 2018. Click here.
Twitter – @ronnyallan1 and @netcancerblog
Facebook – I have numerous accounts:
NET Cancer Blog (my main site with around 6000 as at March 2018) – click here and ‘Like’ Ronny Allan – additional output – click here and ‘Like’
Newsletter – extending the reach into wider areas via a daily newsletter from twitter and other sources. click here to subscribe.
Many of you who read this will already be on these sites so please ‘Follow’ or ‘Like’ as appropriate – be careful you don’t ‘Unfollow’ or ‘Unlike’.
There are so many other sources of routes into my blog and I’m grateful to the many patient advocate organisations, patient advocates, the healthcare community in general and many, many, more. If you’re reading this, thank you so much.
Please note: All information provided on this Facebook page or any of my social media accounts does not constitute professional medical advice. See my disclaimer here: DISCLAIMER
Another great start to the year in both NETs in the news and my social media activity. It’s been really cold where I am though!
I’m so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions! This ‘chat rom’ is not designed to run like a traditional Facebook forum, it’s a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And …. it’s about learning. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb hosted by a world-renowned NET specialist dietitian – subject was the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).
Join the chat group by clicking here or just search for this group in Facebook – “Neuroendocrine Cancer – Ronny Allan’s Group“. I’m not intending it to be a large group so I’ll be capping it around 1000 to take a few months ‘breather’ before deciding what to do. Please answer the simple questions so I can process quicker.
I caught this news in my social media NET
Whether to cut or not to cut (or watch and wait then cut if necessary) and the sequencing of treatments is a really difficult issue for NET specialists. I quite liked two video clips that came out last week and they cover this issue quite nicely including some interesting abdominal challenges in surgery:
a. Risk Stratification and Management of NETs – click here
b. Surgical Considerations for NETs – click here
For patients in UK (England in particular), the long wait for routine access to PRRT could hopefully be coming to an end (despite it being approved in Europe (EU countries) since last year). Dates are now in the diary for discussion and subsequent ‘announce by’ dates. Fingers crossed. Read more by clicking here.
ITM announced that 11 trial sites are now open for recruitment to an expansion of PRRT using 177Lu-Edotreotide (Solucin®) – COMPETE Trial. – Read about it by clicking here.
Blog Site Activity
Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Feb 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here
I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.
Please join my 2018 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter.
The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!). This is not a forum, it’s a place to make people feel safe and to discuss. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc) Join the chat group by clicking here (please answer the simple questions so I can process quicker)
New Audiences for NET Cancer
From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.
For example. my story was once again featured on World Cancer Day – click here. Please join my World Cancer Day calendar event to be reminded each year – click hereand select ‘Going’.
In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world. This was out of the blue but gratefully accepted!
Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click hereto read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs. In the last month, I tweeted 148 times on my personal account which led to over 113,000 views. I was mentioned 74 times by other tweeters, 2500 people looked at my profile and I gained 32 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation!
Engagements and Invites
Attended a meeting coordinated by NET Patient Foundation about a patient app. Apparently I’m on the project team – happy to help.
I have been invited to join a medical conference in Berlin as a patient advocate. This is not a NET conference so is very exciting. I’ve been asked to contribute to doctor-patient communications and the fear factor of living with cancer (in addition to a patient story of course).
I’m attending ENETS 2018 in Barcelona. I’ll be bringing you the latest and relevant news on NETs
Social Media and Stats
Blog Milestone. At the end of February, I accelerated past 495,000 blog views! Thank you all so much ♥ Keep sharing! On track for half a million by March 9th.
Facebook Milestone. I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement! The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Facebook – 5807. This is a key outlet for my blog – pleaseencourage others to like my page(if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in February. Onwards and upwards!
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