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- ASCO 2017 – Let’s talk about NETs #ASCO17 May 19, 2017
- Waiting on PRRT ….. light at the end of the tunnel? May 8, 2017
- NETwork with Ronny © – Newsletter April 2017 May 2, 2017
- The trouble with the NET (Part 3) – miracle cures April 27, 2017
- Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor April 25, 2017
- Don’t believe the hype – 10 Neuroendocrine Cancer Myths debunked April 6, 2017
- There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient April 4, 2017
- NETwork with Ronny © – Newsletter March 2017 April 1, 2017
- In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life March 21, 2017
- Poker Face or Cancer Card? March 20, 2017
- NETwork with Ronny © – Newsletter February 2017 March 1, 2017
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) February 27, 2017
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD February 21, 2017
- 25 Life Lessons From a Two-Time Cancer Survivor February 20, 2017
- Things not to say to someone with cancer February 2, 2017
- NETwork with Ronny © – Newsletter January 2017 February 1, 2017
- Endoscopy for NETs – taking the camera to the tumour January 27, 2017
- Road ahead closed – Bowel Obstructions January 25, 2017
- In the news: Neuroendocrine Tumour Drug in Trial – Cabozantinib January 21, 2017
- Progress report on NETSPOT® and PRRT (Lutathera®) January 18, 2017
- Neuroendocrine Cancer: Nodes, Nodules, Lesions January 17, 2017
- Neuroendocrine Cancer: To cut or not to cut? January 14, 2017
- Does your body now have an extra organ? The MESENTERY January 4, 2017
- NETwork with Ronny © – Newsletter December 2016 January 1, 2017
- Lanreotide vs Octreotide December 28, 2016
- Keep your light burning December 18, 2016
- Neuroendocrine Tumours: a spotlight on Pheochromocytomas and Paragangliomas December 14, 2016
- Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016 December 6, 2016
- Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! December 5, 2016
- NETwork with Ronny © – Newsletter November 2016 December 2, 2016
- NET Syndromes – chicken or egg? November 30, 2016
- Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. November 29, 2016
- Neuroendocrine Tumours – benign vs malignant November 28, 2016
- Happy Thanksgiving November 24, 2016
- Chemo or not Chemo – that is the question November 23, 2016
- Palliative Care – it might just save your life November 18, 2016
- “You must be doing OK, you’ve not had chemotherapy” November 16, 2016
- One every 2 hours November 10, 2016
- Scans for Neuroendocrine Cancer – If you can see it, you can detect it! November 5, 2016
- Neuroendocrine Cancer – Exciting Times Ahead! November 2, 2016
- Let’s hear one massive THUNDERCLAP on NET Cancer Day October 26, 2016
- Neuroendocrine Cancer: Hurry up and wait October 21, 2016
- Did you hear the one about the constipated NET patient? October 18, 2016
- Neuroendocrine Cancer – were you irritated by your misdiagnosis? October 11, 2016
- Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had October 5, 2016
- Neuroendocrine Cancer: Patient Power! October 1, 2016
- Neuroendocrine Cancer – tumour markers and hormone levels September 28, 2016
- “Not the Stereotypical picture of sick” September 19, 2016
- Procrastination – it’s a killer September 19, 2016
- Neuroendocrine Cancer – the diarrhea jigsaw September 15, 2016
- Please vote for Neuroendocrine Cancer September 12, 2016
- Serotonin – the NET effect September 8, 2016
- Neuroendocrine is not your average cancer but it can be pretty mean August 25, 2016
- Stop talking about it, just go do it! August 24, 2016
- Not every illness is visible August 8, 2016
- Neuroendocrine Cancer Nutrition Blog 4 – Food for Thought? August 2, 2016
- Living with Cancer – or Cancer Survivor? August 1, 2016
- Exercise and Cancer: Forward is Forward July 27, 2016
- NET Cancer: Somatostatin Receptors July 25, 2016
- NET Cancer: Troublesome Thyroids July 23, 2016
- What you don’t know might kill you June 24, 2016
- Neuroendocrine Cancer – it can be ‘smoke and mirrors’ June 15, 2016
- Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch June 13, 2016
- Let’s talk about living with NETs June 9, 2016
- Make some noise for a silent cancer June 8, 2016
- It’s scary searching Cancer online June 7, 2016
- Turning points May 28, 2016
- The 5 E’s (of Carcinoid Syndrome) May 25, 2016
- PRRT and Chemo combination therapy – on trial May 20, 2016
- Don’t worry, I really am OK! May 19, 2016
- I can May 9, 2016
- Never mind the Bollocks April 21, 2016
- NET Cancer – unexpected detours April 21, 2016
- Living with Neuroendocrine Cancer – it takes guts April 15, 2016
- 6 years since liver surgery April 12, 2016
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In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is one very big unmet need in a whole range of countries still lacking.
The ‘War on Cancer’ forgot about Neuroendocrine
The ‘war on cancer’ has been around for the last 50 years, it’s still being waged. There are now more ‘fronts’ and it’s taking longer than thought to find the ‘cure’. The recently announced Cancer Moonshot initiative is a timely ‘reinforcement’. Despite this 50 year war, it seems like there’s only been a war on Neuroendocrine Cancer for the last 10 of those years. I guess they were focussed on the big cancers and/or the seemingly impossible ‘universal cure’. Prior to that, for NETs, there is only evidence of some skirmishes, more like guerrilla warfare. Now we have a developed nuclear capability! I believe the turning point was the SEER database work carried out by Dr James Yao who confirmed the incidence had grown by 400% in 3 decades, i.e. confirming it was no longer rare.
Let’s not forget about the consequences of cancer
It is true that half of people diagnosed with cancer now survive for at least ten years. Many live for years with cancer, on ‘watch and wait’ or going through various treatments and tests; their future remaining uncertain. For this group, and even for those whose treatment has successfully removed or shrunk their tumour, the struggle with the consequences and late effects of cancer and its treatment can last for years. Many Neuroendocrine Cancer patients fit into this category.
This is why I was very pleased to hear about the new International Neuroendocrine Cancer Alliance (INCA) campaign to not only address the ‘unmet’ needs of NET patients but to undertake to do it alongside NET specialists representing regional groupings. I was also extremely happy to have been invited as a guest of INCA to attend the first ever joint patient physician seminar hosted by ENETS followed by the annual INCA summit where doctors were also invited to form a panel for the first session. It’s worth remembering that I’m not an advocate organisation, not part of the INCA alliance, nor do I represent any organisation on this blog. I’m simply ronnyallan.com
Unmet Needs for NETs
There’s a lot of treatments for Neuroendocrine Cancer out there, just not everyone has access to them – therefore an unmet need at the international level. Others are earlier diagnosis, access to multi-disciplinary teams (MDT), ability to access quality information at diagnosis and beyond including clinical trials, funding, accurate national registries to improve statistics. One area where I feel there is a huge unmet need is in the area of patient support following diagnosis. Although some countries are more advanced than others in this area, even in the so-called advanced countries, there are huge gaps in provision of long-term support for those living with Neuroendocrine Cancer. For example, physicians need to focus more on:
Late diagnosis. People will be dealing from the effects of late diagnosis which has resulted in metastatic disease – and some people will have been fighting misdiagnosed illnesses for years. That takes its toll.
Consequences of Surgery. People will have had surgery which in many cases is life changing – various bits of the gut (gastrointestinal tract) are now missing, lungs are now missing – many other locations will have been excised or partly excised. These bits of our anatomy were there for a purpose and QoL takes a hit when they are chopped out.
Inoperable Tumours and Syndromes. People will be dealing with remnant and/or inoperable tumours which may or may not be producing an associated NET syndrome (some of the symptoms can be rather debilitating in the worst cases)
Consequences of Non-surgical Treatment. Additionally, people will be dealing with the side effects of multi-modal non surgical treatments, such as somatostatin analogue hormone therapy (Octreotide/Lanreotide), chemotherapy, biological therapy (mTOR inhibitors) (i.e. Everolimus (Afinitor)), biological therapy (protein kinase inhibitors (i.e. Sunitinib (Sutent)), radionuclide therapy (i.e. PRRT). Whilst it’s great there are a wide range of therapies, they all come with side effects.
Secondary Illnesses and Comorbidities. Some people will have gained secondary illnesses in part due to the original cancer or treatment – e.g. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels. There are many other examples.
Finances. NET Cancer can be an expensive cancer to treat and this is exacerbated by the length of time the treatment lasts. Whilst people have access to free public services or private insurance, many people will end up out-of-pocket due to their cancer. Over time, this adds up.
Emotional Aspects. Many NET patients are kept under surveillance for the remainder of their lives. With that comes the constant worry that the cancer progresses, tumours get bigger, new tumours show up, treatments are denied (i.e. PRRT in the UK). It’s no surprise that anxiety and depression can affect many patients in these situations. To some extent, there can be a knock-on effect to close family members and carers where applicable.
As I said in my question above (see picture), even if you found a cure for NETs tomorrow, it will not replace the bits of my GI tract excised as part of my treatment. For many people, even ‘beating’ cancer might not feel much like a ‘win’. It’s a two-way street though – we need to work with our doctors, trying to change lifestyles to cope better with some of these issues. This is why it’s really important to complete patient surveys. However, my point is this, more research into some of these issues (e.g. nutrition, drug dosage) and earlier patient support to help understand and act on these issues, would be good starters.
“Adding life to years is as important as adding years to life”
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Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time; and most did not stop me getting on with whatever needed doing.
I served in the military from aged 16 until 45….. a long time! On only two occasions during that 29 year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy 🙂 ) and aged 39 after falling off a vehicle (in my defence it was really dark!). Illness wasn’t really something I thought much about and for minor things, I would just “soldier on”. From an early age, I truly believed a ‘poker face’ was necessary for ‘street cred’.
Old habits die hard
Even out of the military environment, I adopted the same attitude, the ‘mission’ comes first and my health second. A few ‘civilians’ once suggested I go home after coughing, sniffing and sneezing my way through a day in the office. I responded in the only way I knew by saying I would only be leaving the office early on a stretcher having lost consciousness. To get them off my back, I made sure there was no hint of banter or joviality in my statement. This tactic didn’t really work and they laughed at something they perceived as a joke. However, little did they know, I was deadly serious…….. little did I know, my ‘gung ho’ attitude and ‘poker face’ were to become seriously deadly.
Old habits still die hard
Then in 2010, along came Cancer. For a couple of years before the diagnosis, I had not been sufficiently focussed on my health and ‘soldiered on’. Even leading up to the diagnosis, I was dismissive, refusing to acknowledge this was a threat. You can hear me discuss these feelings in a video clip – click here to watch.
OK, I had to have surgery (etc) but apart from that I basically marched on. However, as the effects of cancer and it’s treatment had started to bite, I accelerated my learning including how the disease might affect me in the future. This knowledge has enabled me to manage risk and make better assessment/decisions about seeking help. But it took a while and gradually over a period of 3 years, I shifted the focus from work to health.
It’s not been easy to learn how to live with my incurable disease. My stiff upper lip combined with an appetite for work didn’t really help in the end. In 2013 (circa 3 years after diagnosis), I finally found the time to work on the reasons for fatigue and many other symptoms – I worked on those and made some really good improvements. I still have issues but my cards are no longer close to my chest, they’re now on the table, particularly when speaking to doctors and close family. However, my poker face is still there, it’s just more relaxed.
Poker face or the ‘cancer card’
“It’s the cancer” can sometimes be the easy excuse to not do stuff. I can play the ‘cancer card’ as well as the next person and it will ‘trump’ all others! I also understand that motivation can be difficult with a chronic illness. However, I don’t want to fall into the trap of doing nothing all the time – as far as I’m concerned, that’s not a good outcome. Consequently, I try not to use the metaphorical ‘cancer card’ too much. In fact, I sometimes even say ‘I can‘ when I actually feel like playing the trump card. I’m nearly always glad I did.
Just my way of coping. How about you?
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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 January’s rate, it could easily be 6000 but that’s probably wishful thinking!
The month ended with a bang! The long-awaited FDA approval of ‘XERMELO’ (Telotristat Ethyl) was announced yesterday. Check out my blog which has all the links you need in one area. Click here to read
New Blogs Published
Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline. So, ICYMI …….here’s a summary with links:
- My Jan Newsletter!
- Neuroendocrine Cancer: To cut or not to cut? – This blog had a fantastic response and it’s clearly a topical subject! I had more people contact me privately rather than publicly which was interesting.
- Things not to say to someone with cancer – topical subject, so many diverse opinions! Great though provoking video too.
- 25 Life Lessons From a Two-Time Cancer Survivor – a diversion to someone else’s post but another blog which had a great response.
- Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD – very useful progress report from an experienced NET doctor.
- It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) – I had one of those ‘cancerversaries’ with a 5 years since my last (perhaps not final!) surgery. Lymph nodes and thyroid mentioned.
Other News in Feb 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 ‘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). 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. I reached 100 email subscribers today!
- I’m making new friends in the interventional radiologist community having been invited to join their twitter chat. That turned out to be profitable as I won $40 of Starbucks e-gifts for being a quick tweeter! I now have some new friends who are producing a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do!
- I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum. I’ll be reporting more on this in the coming weeks.
Patients Included. A new campaign for 2017. I’m very excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I’m being sponsored by the International Neuroendocrine Cancer Alliance (INCA). I’ll be tweeting and posting stuff live from the conference, look out for this.
Blog Milestone. Accelerated viewing figures should put me into a quarter of a million blog views by the end of this month! Thank you all so much ♥ Keep sharing!
Facebook Milestone. My 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. The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.
I’m expanding into Instagram to see how that goes. 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
- Facebook – 4213. 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). Please also join my 2017 awareness campaign event here (select ‘Going’)
- Twitter – 3684 / 2836 Follow me here @RonnyAllan1 / @NETCancerBlog
- Total Blog Views: 239,686
- Blog with most views: 7,888 – The Anatomy of Neuroendocrine Cancer
- Most blog views in one day: 2043 on 15 Jan 2017. Why the spike? ….. “The Anatomy of Neuroendocrine Cancer”
- Most blog views in one month: 19,186 in Jan 2017. Why the spike? …. “The Anatomy of Neuroendocrine Cancer” and “Ignore this post about Neuroendocrine Cancer“
Where did February Blog views come from? – Top 10 countries:
For interest the 10 Ten Facebook followers by Country:
Thanks for your great support in February.
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