RonnyAllan.NET – Community Newsletter JUNE 2018

RonnyAllan.NET – Community Newsletter JUNE 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter).  This was due to a prolonged chest infection from which I'm still recovering.  I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland  My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss is a red flag, although this occurrence wasn't sufficient for me to start waving one.  I will get the results of my Ga68 PET scan on 11 July (please note…
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RonnyAllan.NET – Community Newsletter May 2018

RonnyAllan.NET – Community Newsletter May 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  Summary for May Different type of intro to my newsletter as it's late due to unexpected illness.  In some ways, what happened in May is possibly connected.  I had quite a bit of work to do for a 'Patients Included' event in May in Berlin.  I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer.  I arrived back exhausted and turned my attention to another two things - a patient presentation to the inaugural UK Dietitian Group study day followed by a holiday to Wales. The study day was done on the way to my holiday, was very successful and I enjoyed it. …
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RonnyAllan.NET – Community Newsletter April 2018

RonnyAllan.NET – Community Newsletter April 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Headlines 1.  Patients Included.  I'm a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I'm therefore pleased to have been listed as a Patients Included accredited site providing further  EXTERNAL awareness opportunities - read about this here.  2. I've accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) - It also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here. 3. My blog site is 4 years old.  When I set my blog…
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RonnyAllan.NET – Community Newsletter March 2018

RonnyAllan.NET – Community Newsletter March 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
Headline for the period of March 2018 is reaching a milestone of half a million blog views.  Yay ...... Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I'd been sponsored by INCA.  Fortunately I had prepared the post earlier and was able to spread the news in a few clicks.  I picked up some great information at this conference which I'm feeding into my articles so you get the best and latest thinking.  Here's a couple of pictures of me with famous NET specialists.  [caption id="attachment_12597" align="aligncenter" width="300"] Dr James Yao[/caption] [caption id="attachment_12598" align="aligncenter" width="300"] Dr Jonathan Strosberg[/caption] I caught this news in my social media NET A website I helped design with a…
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RonnyAllan.NET – Community Newsletter February 2018

RonnyAllan.NET – Community Newsletter February 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
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…
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RonnyAllan.NET – Community Newsletter January 2018

RonnyAllan.NET – Community Newsletter January 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs
A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places.  Help me populate locations in my live article on  PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence. MIDATECH Pharma…
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NETwork with Ronny © – Community Newsletter DECEMBER 2017

NETwork with Ronny © – Community Newsletter DECEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half.  I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys.  I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure.  It seems almost impossible to carry that momentum on in 2018 but I'll give it a go!  Check out my top 6 posts of 2017 by clicking here. AND ..... I'm now officially ronnyallan.NET…
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NETwork with Ronny © – Community Newsletter NOVEMBER 2017

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning 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 (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥ That said, I was actually pretty…
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NETwork with Ronny © – Community Newsletter OCTOBER 2017

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Hi NETworkers! 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…
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NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest:   The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.   The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.   The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…
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NETwork with Ronny © – Community Newsletter AUGUST 2017

NETwork with Ronny © – Community Newsletter AUGUST 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …
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NETwork with Ronny © – Community Newsletter JULY 2017

NETwork with Ronny © – Community Newsletter JULY 2017

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!).  July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie!  There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA.  Click here. Ipsen launches the German version of 'Living with NETs' website.  Click here. What's happening on my Blog Site?   As per above, a quiet month.  Due to the vagaries of…
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NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
  Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here. Personalised PRRT is highlighted.  Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS.  I've not watched them all yet due to holiday but they are always great!  Click here. PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
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NETwork with Ronny © – Community Newsletter MAY 2017

NETwork with Ronny © – Community Newsletter MAY 2017

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…
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NETwork with Ronny © – Newsletter March 2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
  Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community. [caption width="500" id="attachment_9598" align="aligncenter"] with Grace Goldstein from Carcinoid Cancer Foundation[/caption] March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don't have an issue with private contact…
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NETwork with Ronny © – Newsletter February 2017

NETwork with Ronny © – Newsletter February 2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much ♥ January's success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before.  If I grew at…
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Things not to say to someone with cancer

Things not to say to someone with cancer

Inspiration, Survivorship
[caption id="attachment_9184" align="aligncenter" width="592"] Graphics courtesy of https://emilymcdowell.com/[/caption] This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere!  Personally, I don't tend to get too excited about it, although there can be extremes.  Most people (not all) are just stumped to know exactly what to say.  Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never met, you don't know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator,…
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NETwork with Ronny © – Newsletter January 2017

NETwork with Ronny © – Newsletter January 2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
Hi NETworkers! Welcome to my third 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). January was a month for breaking records.  I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they're broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer.  Thank you all so much ♥ January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen's Germany HQ near Karlsruhe.  I was made very welcome by the Ipsen staff and I think it's great they want to hear the…
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NETwork with Ronny © – Newsletter December 2016

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month.  For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards.  This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category.  The community award was special because it means we all won the award as a part of this 'Community'.  I've picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I…
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NETwork with Ronny © – Newsletter November 2016

NETwork with Ronny © – Newsletter November 2016

Living with Neuroendocrine Cancer, Survivorship
  [caption id="attachment_8478" align="aligncenter" width="600"] Please share me![/caption]   Hi, welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!). What a month November has been - we had NET Cancer Day build up and I've been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms.  Due to increased activity, I recorded the second highest monthly viewing figures ever - over 13,000 hits on my blog site in one month (and even more on Facebook).  Not bad for a little backstreet disease - but my intention is to take it to the high…
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Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
  For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was gong to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which . seems to have turned rather international) - well done NCSD.Org - you should check out the site and sign up for their newsletter What is 'Survivorship'? The definition differs slightly between national cancer advocate organisations but it would appear it also…
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Sometimes you just need to climb that hill!

Sometimes you just need to climb that hill!

Inspiration, Living with Neuroendocrine Cancer
It was wet, windy and very cold and that was at the bottom of the hill I'm looking up at. It wasn't a terribly big hill but I knew it would need considerable effort and perhaps some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we almost simultaneously said "do we really want to go up that in this weather?"  Oh yes ....... no pain, no gain! So we went up the hill and it hurt.  Up there, it was wetter, windier and colder! However, the 'euphoric high' was worth it.  It was like medicine healing the body and mind. [caption id="attachment_4990" align="aligncenter" width="500"] The 'euphoric high' is kicking in![/caption] Of course, the 'hill' is also a metaphor which might…
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