I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message “I’m feeling perkier”. For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors but certainly not all of them. I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer.
I’ve recently had a ton of ‘7 years ago cancerversaries’ and there’s still a few to go! I’m currently being reminded of an issue that started just after my initial treatment and by coincidence (perhaps?) the commencement of my Lanreotide (Somatuline Autogel). Itching! However, for me, it’s mainly the right leg below the knee (go figure!). I know many people have the same issue but no-one ever seems to find out why – I guess it’s that Neuroendocrine jigsaw thing again?
Initially, I put the issue down to Lanreotide, as this is mentioned in the side effect list on the drug instructions. The initial connection was made because it seemed to be happening immediately after my monthly ‘dart’. A really annoying itch mostly around my ankles and which had to be scratched! An application of a general emollient cream for a few days seemed to do the trick and after a week it was gone (until the next injection …..). However, after a few years, I sensed the issue was drifting away from the injection cycle and adopting a different and more random pattern. I’m also suspicious of a nutritional connection and checking my article Nutrition for NETs -Vitamins and Mineral Challenges, I can see Vit B3 (Niacin) and Vit E are mentioned in regards skin issues. I’d be confused if this was an issue today as I now take plenty supplements to offset GI malabsorption. However, I probably wasn’t taking sufficient between surgery and 2013 as I lacked the knowledge to do so at the time. So nutritional deficiency remains a possibility or at least an added complication. The most recent outbreak has unusually gone on for the last 4 weeks. Maybe I just currently have what many people have – dry flaky skin and the onset of winter probably isn’t helping!
I also seem to have had an eczema type issue in my right ear and mild rosacea for more than 7 years (pre diagnosis). As you can imagine my ‘inner detective’ is working overtime! One thing is clear – this itchy leg issue has plagued me for 7 years.
I know that many people have real issues with rashes and skin itching, I’ve seen this so many times with some people describing it as severe. Clearly when this is the case, a doctor’s intervention is generally required. I just happen to note a very recent response from Dr Eugene Woltering (top NET specialist) who indicated the following possibilities:
Welcome to Ronny Allan’s Community newsletter for October 2017. A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post “Neuroendocrine Tumors – no treats, just tricks”. If you’ve not seen it or commented on it, check it out here on the Facebook site. I suspect the number of shares will never be beaten (652 in 36 hours). 31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017. It also made October 2017 the highest monthly views ever. I am so grateful to those who made that happen ♥
What’s in the NET News
The following news items may be of interest:
The huge (but expected) news that Novartis Novartis (manufacturers of Octreotide) is purchasing Advanced Accelerator Applications (AAA) (manufacturers of Lutathera Lu-177 (as used in PRRT)). This is a significant acquisition and should benefit the NET community given the size of Novartis and the potential of PRRT worldwide. It will be interesting to see if this has an impact on the UK approval
I wasn’t at NANETS but did check most of the output consolidated into this post – Read more here
GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.
Made it to 3 finals in the WEGO Health awards, I posted about this here.
Due to the vagaries of Facebook inner workings, some of these 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.
October was a busier month in terms of blogging despite several personal challenges and external projects on the go. Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time. I still managed to break 2 records in October, mainly due to my Halloween themed post on 31st. The biggest amount of view in any one day had stood since Jan 2017 and was totally smashed, as was the best month too. Thank you all so much for the support.
Please join my 2017 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 I cannot accept telephone calls on a one to one basis. Also, 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.
Awareness Activity in October 2017
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!
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:
Twitter. I took part in a WEGO Health patient leader chat on twitter where I was able to contribute to some general cancer questions (subject chronic illnesses). It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and mentally hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences! A summary of the conversation can be found here.
I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. 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). In Oct, I tweeted 218 times on my personal account which lead to almost 89,000 views. I was mentioned 160 times by other tweeters and gained 49 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. 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. Currently 374 subscribers – up 11% on last month.
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!
Macmillan Cancer Support. I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum. In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities. This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation. They have recently agreed to feature NETs on 10 Nov 17 and I’m writing an article in preparation.
I was delighted to speak to the South Wales NET patient group (sponsored by NET Patient Foundation). Here’s some pictures of Chris and I with the group and the local NET Specialist. Dr Mo Khan is setting up a brand new NET Service in Wales – great news for this group.
On 16 November, subject to contract, I’ve been invited to speak for around an 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig! Post to follow if allowed by contractual arrangements.
Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently. I’m currently in a pool of patients who may be featured in a UK national, fingers crossed. Writing an article for Macmillan on NET Cancer Day.
Social Media and Stats
Blog Milestone. In October, I accelerated past 400,000 views! Thank you all so much ♥ Keep sharing! On track for half a million by Easter 2018.
Facebook Milestone. I would love to achieve 6000 followers by the end of 2017 but this will be a challenge. 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.
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 230 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! You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Facebook – 5337. This is a key outlet for my blog – please encourage 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).
WOW! – that’s 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 October. Onwards and upwards!
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