- 352,464 hits
- The Invisible Neuroendocrine Tumor Patient Population August 14, 2017
- Lanreotide for Lung NETs – SPINET Trial August 8, 2017
- NETwork with Ronny © – Community Newsletter JULY 2017 August 1, 2017
- At home with Lanreotide July 13, 2017
- NETwork with Ronny © – Community Newsletter JUNE 2017 July 5, 2017
- Study of Pembrolizumab With Lanreotide Depot for Gastroenteropancreatic Neuroendocrine Tumors (PLANET) June 17, 2017
- Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness June 16, 2017
- Ronny Allan’s ‘PoNETry’ © – An Ode to Lanreotide June 13, 2017
- Living with Neuroendocrine Cancer – 6 tips for conquering fear June 8, 2017
- NETwork with Ronny © – Community Newsletter MAY 2017 June 1, 2017
- ASCO 2017 – Let’s talk about NETs #ASCO17 May 19, 2017
- Waiting on PRRT? ….. there’s 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 – 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
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UNFORTUNATELY, MILL HILL TIMES HAVE REMOVED THE DOCTOR’S STORY FROM THEIR WEBSITE BUT I’M TRYING TO OBTAIN THE SCRIPT ELSEWHERE.
When I was undergoing my initial treatment and surgery I didn’t really have the knowledge I have now. I was initially treated by experienced Neuroendocrine Tumour (NET) specialists in an established NET Centre and I guess I felt comfortable with what was happening. In hindsight, I wish I had studied the disease earlier as I would have understood at the time what was actually happening to my body and more fully understood the treatments I was to undergo.
As we all know, Cancer knows no boundaries and even Doctors can succumb to his disease. Despite this, I was still surprised to read a story by Dr Michael Richardson from North Carolina USA. Diagnosed in 2011, he talks about his diagnosis and treatment for Neuroendocrine Cancer which is the basis of my blog. Although Dr Richardson was not a Neuroendocrine Cancer expert at diagnosis, he has been able to put his medical knowledge and clinical understanding to great use. Not only has he carefully interpreted his diagnosis and his treatment plan, he has also been able to explain the detail in a very understandable way – great for patients but also very useful for medical staff not familiar with Neuroendocrine Cancer.
This blog is to consolidate his patient story written in sections and as far as I can see it only appears to be published in his local newspaper where he is a guest contributor.
His story so far is written in three parts comprising a number of sections as follows:
Thank you for reading
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Over the last few months, I’ve seen quite a few posts entitled “Not all Cancer is pink”. I suspect it’s a reference to the ubiquitous publicity that many women’s cancer related advocates, bloggers and organisations attract.
Those who use this phrase are perhaps concerned there is an imbalance and inherent unfairness in the distribution of support and are frustrated that their own cancer does not fare as well publicly? I share that frustration, however, I take my hat off to the battalions of advocates, bloggers and organisations who work very hard for breast and the various gyneacological cancers whether they push pink or not.
I’ve even seen this term used within my own community – ‘Not all cancer is pink, some cancers are black and white’. This is clearly an attempt to tie in the well-known ‘pink’ to the not so well-known ‘black and white’. Notwithstanding the potential for upsetting hard-working women’s cancer organisations, I also think we might be missing a trick. And here’s the trick which is my alternative view on where we should be focused – Not all Cancer is black and white. As I don’t want to indulge in ‘Cancer Olympics’, I’m clearly talking about the phrase ‘black and white’ rather than the ribbon colours.
Let me explain my logic. There are two sides to most people’s experience or perception of cancer. Firstly, symptoms appear, a diagnosis is made, treatment is applied and if it works, the patient will hopefully go into remission after a period of time, normally 5 years. The other side is that sadly, some people may not survive the ordeal and that even applies to certain so-called ‘pink’ cancers (metastatic breast cancer for example). Clearly there are variations of my very simple binary explanation but these two outcomes are very common scenarios.
However, many cancers (including my own Neuroendocrine Cancer) are often silent, produce vague symptoms, are difficult to diagnose, treatment plans can be a challenge, most metastatic patients and many with other stages will never really be cured and will need lifelong support (another challenge). Clearly there are also variations on this theme but with many scenarios and different outcomes.
Thanks for reading
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When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly ‘somatostatin analogue’ treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot). Technically this is a hormone therapy (it’s not chemo).
Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life. Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects. Check out my Lanreotide vs Octreotide comparison blog.
Although I didn’t relish the thought of any injection in the ‘rear end’ every 28 days for the rest of my life, I admit to being slightly relieved with his choice. I had been reading about patient experiences with the alternative, mainly the needle length and the occasional problems mixing the drug prior to injection. Although Lanreotide has a similar gauge (thickness), the needle is a good bit shorter and is deep subcutaneous rather than Octreotide LAR’s intramuscular (IM) route. No mixing is required as Lanreotide comes prefilled.
If you’re interested in the science, please be aware that a somatostatin analogue is a synthetic (manufactured) version of a naturally occurring hormone which inhibits the peptides and amines that can be dangerously hypersecreted by certain neuroendocrine tumours. If you are after a more technical explanation of this process, you should check out my blog ‘Neuroendocrine Tumours – not an exact Science‘ – inside you will also find a link to a fantastic paper by Dr Eugene Woltering, one of the world’s top NET Cancer experts.
Following an Octreotide Scan, various areas lit up confirming the output from previous CT scans. It also confirmed new ‘hotspots’ for further investigation. This specialist scan confirmed I probably had working receptors to receive something known as a Somatostatin Analogue to help with combatting the effects of Carcinoid Syndrome (please note that not having working receptors does not mean there is no benefit of receiving somatostatin analogues). I was therefore prescribed daily Octreotide (self-injecting) whilst I was waiting for my first major ‘debulking’ surgery, This treatment did eventually lessen the main effect of the carcinoid syndrome, facial flushing. It wasn’t until after my first surgery that the facial flushing was dramatically reduced. I commenced Lanreotide on 9 Dec 2010 and I haven’t had a facial flush since. It’s worth adding that my Chromogranin A (CgA) blood test (correlated to tumour mass) did not return to normal until after a liver resection 3 months later. My 5HIAA urine test results (mainly correlated to serotonin levels) returned to normal prior to liver surgery in Apr 2011 indicating the Lanreotide was doing its job! Somatostatin Analogue side effects are to be expected and most people seem to have different and/or greater or lesser effects than others. The daily Octreotide did not bother me too much other than some discolouring of the stomach at the injection sites (i.e. black and blue!) ….I’m more observant nowadays, so it’s possible I may not have recorded this experience properly.
If you read the UK patient leaflet which comes with each injection, you can see a list of potential side effects as long as your arm. Neuroendocrine Cancer comes with many signs, syndromes, symptoms and suspicions, so I always advise caution and some analysis when assigning reasons for problems encountered. For North America, the equivalent instructions can be found here (Somatuline Depot). I don’t know precisely why (……. I do have my suspicions), but I’m always very sceptical about the criteria used to compile the list of side effects for any medicine. In my own mind, I’m fairly certain that people have existing symptoms or new symptoms as a result of coincidental treatment that are erroneously labelled under drugs during trials.
You can also self-inject Lanreotide but I’m not ready for that yet! If you do self inject, please note it the site is “the upper outer part of your thigh”. Check out the Ipsen leaflet here.
I think the injection site is very important and getting this wrong will worsen the side effects. For the Healthcare Professional or trained family member administration, the site should be the superior external quadrant but not of the whole ‘butt’, it means of the left or right buttock that is being used on an alternative basis. If nurses think the whole ‘butt’, they might be tempted to stick it quite close to the ‘intergluteal cleft’ – not advisable! There’s a great video from Ipsen here.
Although the patient leaflets are very clear on how to administer the drug, once the location is established, I always discuss the following with the Nurse before I receive the ‘dart’:
1. The injection should have been removed from the fridge at least 30 minutes before treatment.
2. Don’t pinch the skin, stretch it.
3. Put the needle in fast at 90 degrees, inject the drug slow – 20 seconds is recommended. As the drug is viscous, in any case, there is normally some resistance to a fast release.
4. Do not rub the area after as this action can interfere with the formulation of the drug.
My experience with side effects. People have different experiences with side effects and just because a particular side effect is mentioned, does not mean to say that everyone will be troubled – many patients experience little or none. For me, over 6 years, I think I can attribute the following to Lanreotide:
- itching but only on the legs below the knees centred on the ankles – and nearly always the right leg. Occasionally, the injection site will itch but only for a day or two. I have a tub of emollient cream (almond oil) on standby which seems to calm it down. Note …… a little bit of me thinks there could be a connection with vitamin/mineral deficiency and perhaps a coincidental occurrence and this problem seems much less of an issue over 6 years later.
- minor pain at the injection site but this only lasts for an hour or two and I believe this to be associated with the administration of the injection, i.e. if the injection is done properly, I don’t really have this problem except for a second or two as it enters. Once, I had pain for 10 days. In my own experience, the best and least painful injections are those done by trained personnel who are confident.
- small lumps form at the injection site which is alternating superior external quadrant of the each buttock. You may occasionally hear these being called ‘granulomas‘ or ‘injection site granulomas’. I find that they are more conspicuous if the injection is done slightly too high which was my initial experience and they took months to fade. I opted to stand up for the first two injections and I attribute this decision for a slightly too high injection site. I now lie down which is actually recommended for the smaller and thinner patient. Although the lumps have reduced in size, I have not seen a new lump for some time indicating location might have been the cause. They sometimes show up on scans.
- fatigue normally within 24-48 hours of the injection but this is not consistent. Not even sure it can be classed as proper fatigue but it’s a ‘you need to sit down and fall asleep‘ feeling! When this occurs, it normally only lasts for 1 day before the normal energy levels return. Again, like the itching, this appears to be less of an issue today.
- malabsorption. although the side effects of gastro-intestinal (GI) surgery and gallbladder removal can cause malabsorption issues leading to steatorrhea (basically the inability to digest fat properly); somatostatin analogues can cause or exacerbate existing steatorrhea, as they inhibit the production of digestive/pancreatic enzymes which aid fat digestion. Most months, I notice a marked but short-term increase in this problem normally within 48-72 hours of the injection.
A few years ago, there was some ‘talk’ that somatostatin analogues were also able to stunt or reverse the growth of certain neuroendocrine tumours. Has this been the case for me? Possibly. I’ve had regular CT scans every 3-6 months and since two bouts of major surgery in 2010/2011, I’ve also had 3 x Octreoscans over the same period. I did once spend a day analysing 4 years of scan results looking for variations in size and concluded that there was a stable trend and potentially a fading of one or two of my largest liver tumours. I was reminded these two types of scans were not really precise enough to detect small millimetre increases or decreases and as there were other factors at play, there was little commitment to make this declaration. However, I did note in the summary of the CLARINET study, Lanreotide was associated with prolonged progression-free survival among patients with advanced, grade 1 or 2 (Ki-67 <10%) enteropancreatic, somatostatin receptor–positive neuroendocrine tumours with prior stable disease, irrespective of the hepatic tumour volume. In terms of its anti-proliferative effects, an interim report from the CLARINET extension study suggested longer-term Lanreotide treatment is well tolerated with ‘anti-tumour’ effects in patients with progressive disease. The final CLARINET open label extension study report additionally provided evidence for long-term PFS benefits of Lanreotide Autogel 120 mg in patients with indolent pancreatic and intestinal NETs.
There’s currently a trial ongoing in relation to Lanreotide and Lung NETs – read by clicking here.
I have my ups and downs and I do feel quite well most of the time. Most people tell me I look quite well too – lucky they can’t see my insides! Over the last 6 years, I’ve made some fairly significant adjustments to cope with my condition and maintain a reasonable quality of life – my monthly injection of Lanreotide is no doubt playing a big part.
Finally, please spend 5 minutes watching this fascinating video from Ipsen. It explains in easy terms how Lanreotide works. It also has a useful summary of the side effects at the end. Click here to watch the video.
I’ve just been enrolled onto a new service whereby the injection is now administered at my home via an Ipsen provided and funded nurse. Read here to see if you can also take advantage of this service.
Here’s to another 6 years of Lanreotide!
Thanks for listening
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I recently blogged about a well-known BBC political reporter who has a Neuroendocrine Cancer with a Lung Primary. However, in the usual media ‘double speak’ which can sometimes pervade the coverage of such events, he is said to have Lung Cancer. As I said in that blog, sometimes with Neuroendocrine Cancer – the devil is in the detail and you just need to dig to find it!
No sooner had I published this blog, when I was alerted to the broadcasting of a film about rock star Wilko Johnson who has the most amazing story to tell. Wilko is a former member of Dr Feelgood, a famous British R&B band who were pretty popular in the 60s/70s/80s and remain so today.
In 2014, Wilko was diagnosed with Pancreatic Cancer and was told he had a year to live. One year later, a photographer friend Charlie Chan (who just happened to be a doctor) commented that he looked too well and was still doing his routine and fast-paced musical performance, that something was perhaps not right about this diagnosis. To cut a long story short, he was retested and re-diagnosed with a Neuroendocrine Cancer with a primary in the pancreas. However, it was a large tumour (the size of a melon) and the surgery was ‘extreme’ with a lower than normal chance of survival. He seems to be doing OK so far. However, the ‘double speak’ is also being used in his case as nearly all reports and news articles state he has Pancreatic Cancer.
Until I saw the film on BBC1 a few days ago, I hadn’t realised the film was even being made. The first half of the film is really about a man who thinks he is going to die and he doesn’t really have an issue with this – he misses out all the usual emotions moving straight to acceptance. He also decided to do a ‘final’ gig teaming up with Roger Daltrey (The Who) – you can watch this from a link below.
I suspect the film sponsors were totally surprised to be continuing the film to include his re-diagnosis, his surgery and the beginning of his recuperation (I suspect Wilko was more surprised though). Having now watched the full 90 minutes, I can say I enjoyed it (particularly the second half) but I suspect it won’t be everyone’s ‘cup of tea’. However, it gives an insight into the man himself along with his journey. Some of the music clips will get your feet tapping. A little bit of me wants to get to know him more as I hadn’t realised he is a bit of a philosopher (ex-English teacher) and an astronomer in addition to being a rock star and generally down to earth ‘geezer’. There are some good quotes in the film including “if the cancer is going to kill me, I don’t want it to bore me”. This probably explains his very positive attitude when told he would die and decided his ‘new normal’ would be his old normal!
There is not a single mention of Neuroendocrine Cancer (unfortunately) and its free airing on TV is now over. However, the film came out on DVD 11 Dec 2015.
There might be limitations on playback in non-UK countries but WATCH THE TRAILER by clicking here
There’s also an interesting interview with Roger Daltrey (member of The Who and friend of Wilko). There is more detail of this “other” cancer and his recuperation but again the word Neuroendocrine is not mentioned. WATCH HERE
Here is the gig with Roger Daltrey, which Wilko thought this would be his last. WATCH HERE
Having watched the film, I now have more sympathy with Wilko’s position and there’s a bit of me thinking we might hear some more about his condition downstream ………..
23 May 2016 – two new clips to add to the story:
Good luck Wilko!
thank you for reading.