Living with Neuroendocrine Cancer – 8 tips for conquering fear

8 tips for conquering fear

Opinion:

Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the ‘system’ picked up something suspicious and I am where I am today. It’s amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement.

Stabilised

Following diagnosis, I got quite a lot of attention in the first 2 or 3 years as I went through various surgical and other types of treatment, and I eventually earned the accolade of ‘stable’.  Not cured, not in remission, not totally free of disease, just ‘stable‘. I guess I’m one of millions of people who now have a condition to live with for the rest of their life.

I may be stable but I still need support and surveillance!

But I haven’t really been left alone, I have meetings with my specialists every 6 months plus routine surveillance testing. I have my GP (PCP) on tap via same day appointments. Thankfully, my tumours are slow growers and the biochemistry results that check their growth and function have been normal for some years now.  I also have my specialists’ telephone numbers in the event of an emergency.  The other great thing is that I’m lucky to have a direct line to a specialist Neuroendocrine Cancer Nurse for routine stuff.  So I can sit back and relax, right?  ……… Sounds good but not really the whole story.

I’m in tune with my body

I can honestly say I’ve never been more in tune with my body – there’s nothing like a cancer diagnosis to force you into a change of attitude. Not just about how you look after your body but learning how to read the signs and assess risk. However, the difficult area with this disease is that many of the side effects of treatment can mimic the symptoms of a recurrence or further spread and vice versa. And sometimes there can be no rhyme or rhythm (or logic) when patients experience these things. I once wrote about the “Neuroendocrine Cancer Jigsaw” where patients had pieces called Signs, Symptoms, Side Effects, Secondary Illnesses, Syndromes, Comorbidities and Coincidences.  I also include the proverbial ‘missing piece’ as part of the jigsaw! However, I do think the ‘missing piece’ can sometimes be a metaphor for an instantly contactable NET expert or even some experience and education by the patient or a trusted advocate.

Sorting out the symptoms

The comorbidity and coincidence pieces were belated add-ons to the list because sometimes it not all about the cancer – even cancer patients get regular diseases and ailments. The difficulty is working out if there is a connection or not. Take my 2017 issue of back/hip/leg pain for example. I analysed all the timings in my diary (…top tip, keep a diary), there were no common connections to any particular occurrence or activity for all occurrences of the pain.  I got some pain killers and decided to tough it out.  After 14 days, I got fed up and saw my GP (PCP). I also ran it past my NET Specialist Nurse for assurance.  After 22 days, I was still doing pain killers, waiting on a physiotherapy appointment; and doing back exercises at home. Why is my back pain suddenly a lot worse?  My Calcium and Vitamin D are checked regularly and everything is in range. I’ve been receiving somatostatin analogues for over 6 years, so that might be a factor.  I also reminded myself I’m no longer 21 (so did my NET Nurse!).  Three months later, after seeing a physiotherapist, things improved. However, I would be lying if it didn’t cross my mind that the problem could be bone metastasis.  I studied the symptoms of bone metastasis and concluded that I have none of those other than the pain. I analysed my recent scan which said there were “no bony lesions”. I also registered the fact that my biochemistry results are rather good and have been for 6 years.

And then there were the 3 episodes of constipation where the possibility of a bowel obstruction floated around in my thoughts.  However, time was once again a healer (along with some quick advice from my specialist NET Nurse!).

A couple of years ago, I thought I felt a lump on my right clavicle by the sternum.  However, an MRI later dismissed it as nothing.  Due to a piece of metal in my body, to be honest I was more scared about the MRI than the potential lump!

I always remember a great quote from Dr Eric Liu Even NET Patients get regular illnesses“.  He’s right.  But it’s also right that people living with a long-term cancer can live in perpetual fear of a worsening state of health or a recurrence of the cancer. For the incidents I highlighted above, the fear that these things were related to cancer growth or recurrence did go through my mind.

Fear can actually be a side effect of cancer

I think all those living with cancer need to be alert and be proactive via education and communication with their medical team and GP (PCP).  However, stopping yourself thinking that anything wrong with your body is somehow connected to the cancer, perhaps needs a different approach, particularly if you have a higher than average risk for recurrence. Fear of cancer relapse or recurrence, is said to be associated with poor quality of life, greater distress, lack of planning for the future, and greater healthcare utilisation.  However, if you do suffer from this type of fear, you’re not alone.  A recent study stated that 50 percent of all cancer survivors have moderate to high, or clinically significant, fear of cancer relapse, which could persist over the whole trajectory of their illness.  Younger patients might have a bigger challenge on their hands as their future is uncertain.  Patients with young children have an additional concern, that’s another fear area and a very difficult and tough one.  And those on the older side who initially thought they might not see grandchildren, or see them growing into adults, that is something I personally found tough.

Even ‘warriors’ can be fearful.  Are you a warrior or a worrier?

WORRIER OR WARRIOR (2)

Psychological problems – another unmet need? Probably.

Conquering fear is difficult and no one size fits all. However, in the most general terms I would suggest the following 8 tips:

  1. Accept your diagnosis – you have cancer, it has the potential to change your life, you most likely need to make adjustments. But this is not to say you also accept that improvements cannot be made and things will not get better …. because they can. This is particularly important for those with incurable cancers needing treatment for the foreseeable future. I accepted my situation very early on and I think that has been helpful in the long-term. Prognostic detail is a worrying thought and a difficult one. However, no-one really knows for sure. After 8 years with an incurable metastatic cancer, I’m still here and continue to be heartened by comments such as these here (click here).
  2. Accept that your road will probably not be straight and smooth.  There will be bumps and bends and you will need to deal with them as and when they arise.  Don’t try to second guess what the bumps and bends might be and then worry in case they happen. No-one really knows for sure and they might not happen.
  3. Identify your triggers – what is it that is triggering your thoughts? For me it’s more physical things like the lump, constipation and back pain. Other triggers for some might simply be an anniversary of a diagnosis or a treatment etc (or both), or an upcoming treatment. Think about how you can get past these obstacles. For example, on ‘cancerversaries’, plan to be doing something that’ll take your mind of it. For physical things including upcoming treatment, it’s all about what I said above, education, risk management and communication with your medical team ….. put yourself in control. I also have great sympathy for younger patients and those with young dependent children. I can’t put myself in their shoes and all I can suggest is that these tips are still relevant in some way.
  4. Talk about it. Family, friends, other patients, your medical team. I don’t have any issues talking about it – writing posts in my blog is also really therapeutic for me (even this one!) and I hope others appreciate it too. Patient forums can be frighteningly good but …. be careful, many can also be good at frightening and stressful.
  5. Social Media and the Internet. Although talking about your cancer can be a stress reliever, clearly social media can actually be fraught with danger. As I said above, patient forums can be frighteningly good but also good at frightening.  You can extend this issue to the entire internet, which is full of false claims of internet cures spreading false hope, out of date prognostic data causing unnecessary fear and anxiety. Pick your social media and internet sites carefully, fake news, incorrect healthcare news, and bad advice is very easy to find.
  6. Focus on Wellness.  This is a huge area and it’s pretty much up to you to resolve. Yes, some willpower is involved and it includes both physical and mental wellness. For me I try to do exercise when I can (mostly walking) and I try to make sure I get 8 hours sleep (this is a fairly recent tactic which is really helping with fatigue). With diet, I try to avoid anything that greatly exacerbates the side effects of my treatment. Travelling, family and visiting places with fantastic views is most definitely a tonic for me (and that normally means exercise to get there). Anything that makes you relaxed!
  7. Be patient.  Fear of your condition taking a downwards movement will probably never completely go away but perhaps as I said above, time is a healer.  It took me over 3 years to become more relaxed about my own future.
  8. If all the above doesn’t work, perhaps professional counselling is required?  There are specialists who work with cancer patients to help them accept that fear of recurrence/relapse is a normal part of the cancer experience. They can help you develop strategies to cope with your fears and move forward with your life.

If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor.  In fact, you may appreciate this excellent video from NET Patient Foundation presented by Kym Winter, a qualified Psychotherapist and Counsellor – click here.

I also liked this video by Dr Michael Burke, a Psychiatric Oncologist – click here

Remember …….. “Googling your symptoms when you’re ill can sometimes be the most efficient way to convince yourself you’re dying”. Anon

Join my group – a helpful bunch!

 

Stay well all

Thanks for reading

 

NETwork with Ronny © – Newsletter March 2017

 

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.

with Grace Goldstein from Carcinoid Cancer Foundation

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 but please note my disclaimer. My winter cold extended into March including during the ENETS/INCA symposium and although I had no voice, I still managed a question to the panel.

Despite a low number of blogs, I still managed to accumulate the second biggest monthly blog views ever. Thank you all so much 

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:

Other News in Mar 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 almost doubled the amount of subscribers in March! Currently 168.
  • I’m making new friends in the interventional radiologist community and am waiting on 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 also seeing an increase from the Pathology community.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Blog Milestone.  In March, I tipped over the quarter of a million views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. 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.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

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Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 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

Figures

Where did March Blog views come from? – Top 11 countries:  Denmark is a new entry.

 

 

For interest. the 10 Ten Facebook followers by Country – Spain overtakes France 🙂

Thanks for your great support in March.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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NETwork with Ronny © – Newsletter February 2017

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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 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:

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.

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Instagram

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

Figures

Where did February Blog views come from? – Top 10 countries:

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For interest the 10 Ten Facebook followers by Country:

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Thanks for your great support in February.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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NETwork with Ronny © – Newsletter January 2017

network-with-ronny

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 patient voice.  Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’.  Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s.  See my Facebook post about this visit: https://goo.gl/hyJ0Si

New Blogs Published

A busy month for new blogs. 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:

Other News in Jan 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.  Two new openings in Dec to report:

  • Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer.  See my Facebook post about this visit: https://goo.gl/hyJ0Si
  • 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.  You can sign up for this newsletter here as I won’t be posting it every day.  Click this link and sign up if you think this is something you’d be interested in receiving.
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting on this in the coming weeks.

Patients Included.  A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017.  We want to be included right?

Blog Milestone.  My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million.  Thanks – 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.

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Figures

Where did January Blog views come from – Top 10 countries:

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For interest the 10 Ten Facebook followers by City:

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Thanks for your great support in January – a great start to 2017.

 

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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NETwork with Ronny © – Newsletter December 2016

 

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 resumed normal activity and then a sprint finish at the end of the month took me over the magic 10,000 blog hits figure (and even more on Facebook).  Stick with me because I really need your help and support and anyone else you know who can assist.  The WEGO awards brought a significant increase in twitter followers.

Blogging

A quiet month in terms of numbers of blogs. 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:

  • My Nov Newsletter!
  • A blog all about Carcinoid Crisis – potentially one of the most important pieces of information you need to know.  Read here.
  • My award announcement!
  • First in a series of ‘spotlight on ……’ posts – this one on Pheochromocytomas and Paragangliomas.  Read here.
  • I shared an inspiration message with you – one that I received from an old friend. Read ‘Keep your light burning’ which had a great response.
  • Confused about the difference between Lanreotide and Octreotide?  This blog will help – it got a really good response and you can read it here.  I also received lots of questions about the individual drugs which was great and shows the importance of this subject to patients out there.

Other News in Dec

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.  Two new openings in Dec to report:

  • The exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories continued into Dec culminating in the award win (you can listen to the announcement live here).  I also featured in a radio show just before the announcement and you can listen to it here (start at 40.30).
  • 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.  You can sign up for this newsletter here as I wont be posting it every day.  Click this link and sign up if you think this is something  you’d be interested in receiving.

Blog Milestone.  My blog tipped over 200,000 views in Dec and it’s already accelerating toward a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page was 2 years old in Dec 🙂  Please recommend this page to anyone you think would be interested.

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Invite or recommend my page please – let’s grow awareness!

Figures

Where did December Blog views come from – Top 10 countries (Dominican Republic seems to be a new source of interest):

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For interest the 10 Ten Facebook followers by Country.

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Thanks for your great support in December.  Looking forward to serving you in 2017!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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NETwork with Ronny © – Newsletter November 2016

 

network-with-ronny
Please share me!

 

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 street (main street).  Stick with me because I really need your help and support and anyone else you know who can assist.

Blogging

I seem to have produced an above average amount of blogs this month. 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:

Other News in Nov

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.  Two new openings in Nov to report:

  • Cancer Knowledge Network.  An article published in what is said to be North America’s most widely read cancer education resource.  Read it by clicking here.
  • Mentioned by Macmillan Cancer, one of the world’s biggest Cancer support organisations.  See here.  You could increase the impact of this opening by clicking on the black star here to increase my likes number.
  • And ….. there has been masses of exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories:  Blog and Community.

Lutathera (PRRT) Delay. Not the best news from USA where it was announced the approval of Lutathera (PRRT) would be delayed beyond the projected date of 28 Dec 16. A delay of several months seems to be forming on the airwaves but the expanded access program (EAP) will be extended until this issue has been resolved.  CCF has great info on EAP – click here

Living with NETs Website. A new website sponsored by Ipsen (Lanreotide manufacturers) was launched on NET Cancer Day.  This is a special site for me as I was involved with other patients in advising and featuring on the site.  Take a look by clicking here.  Check out my patient video here.

More treatment options for Lung NETs?  Lung NETs lack many of the treatments available for other types of NET but a new trial of Lanreotide could help.  Read here.

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For interest the 10 Ten Facebook followers by Country.

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Thanks for your great support in November.  Looking forward to serving you in December!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Living with NETs – a patients included award winning site

livingwithnets ronny story

It’s no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named ‘Living with NETs‘.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event.

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more.  And it’s not just learning about NETs, it’s so much more than that.  It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Check out my series of Living with NETs videos available on the site – click here

Doctors might be the experts in your condition

Do you know what?  I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas.  On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not.  There doesn’t seem to be any point in beating them up because they don’t know enough about NETs.  Let’s help educate them instead!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site HERE

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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My Diagnosis and Treatment History

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

 

Ignore this post about Neuroendocrine Cancer


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When I was diagnosed, I wasn’t feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the ‘long game’ and will sometimes take years before it’s finally discovered.  It is very very very sneaky.

Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones, bung you up with fibrosis, and get into your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking – however, it will also try the physical route.

As it spreads, it can become noisier through growth but also by secreting excess amounts of hormones and other substances. It knows that tumour growth and these excess hormones and substances will mimic routine illnesses such as IBS, diarrhea, stool changes including steatorrhoea, stomach cramps and bloating, asthma, facial flushing, menopause, weight loss, anaemia, fatigue, tachycardia (fast heart beat), pain, and nausea – a real witch’s brew of symptoms. These may manifest themselves as common endocrine conditions e.g. it can mess with your blood sugar and thyroid levels.  These are a few examples, there can be many others – it’s a real witch’s brew of symptoms. Neuroendocrine Cancer thinks this is great because it fools doctors into misdiagnosing you with something else which means it can continue to grow undetected and unfettered, spreading further inside you.

If nothing is done to stop its relentless growth, it will eventually kill.

However, sometimes an inquisitive doctor or nurse upsets its progress by thinking ‘outside the box’. Neuroendocrine Cancer hates when people are aware of its devious nature and hates when people know which tests can be used to find it and which treatments are best to attack it. Inquisitive, proactive and determined patients can also add to this effect and sometimes a bit of luck is involved.

It doesn’t give up easy and tries to work around your treatment. It knows your treatment will come with certain consequences and it will try to exploit this situation by keeping you guessing between cancer activity and these consequences. It really hates observant medical staff and patients, particularly those who understand Neuroendocrine Cancer.

Unfortunately for Neuroendocrine Cancer, there is now more knowledge about its devious activities and the latest statistics indicate it’s starting to be caught earlier. Nonetheless, we cannot afford to become complacent.

Neuroendocrine Cancer hates awareness and it will be extremely happy if you don’t share this post.