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Never mind the Bollocks


stream_imgAs it’s Testicular Cancer Awareness Month, I thought I’d share a personal story with you.  This is something regarding my own diagnosis and something as yet unpublished.  I don’t tend to share some very personal stuff but this is on the boundary of that rule and there are some important messages to be teased out.  For those who follow my blog in detail, you will remember the post entitled “Neuroendocrine Cancer – Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences”.   As you can see from the title, I got hooked on a bunch of synonyms (small s) that represent the difficulty in sorting out what can be attributed to NETs and what might be something else.  You’ll note they all begin with the letter ‘S’ except ‘Comorbidities’ and ‘Coincidences’.  These 2 were actually retrospective add-ons to the blog title and there is a potential overlap between both.

Life is full of coincidences and I’m certain this is also the case with issues NET patients have from time to time.  There is a high possibility that some things which were going to happen health-wise before NET Cancer came along, will most likely still happen and it can often seem like the NETs have some causal effect.  As my friend Dr Eric Liu says ‘Even NET patients get regular illnesses’.

I also suspect the same thing can happen pre-diagnosis and if you’re unlucky, during the diagnostic phase.   This sort of event has the potential to confuse an already confusing diagnosis!  So here’s a story about my ‘COINCIDENCE’ which eventually turned out to be a ‘COMORBIDITY’.

At the beginning of 2010 (remembering my diagnosis was July that year), I did what all men should regularly do – I checked my ‘chaps’ for lumps.  Sometime in January, I got the feeling my left ‘chap’ was bigger than the right and I monitored that for a few days.  Eventually, it was patently obvious there was an abnormality.  I immediately went to my GP and he diagnosed a hydrocele.  Apparently these are quite common with men.  He was able to quickly work this out by shining a torch through the offending gonad area and as the light came out the other side, this was confirmation it was excess fluid.  He said it might go away on its own but explained there were medical procedures to correct it including fine needle aspiration (not normally a permanent fix) or surgical repair (the most permanent fix).   I left it for a few weeks and as time passed, the size of my left ‘chap’ increased.  It became really uncomfortable and painful so I asked to be referred to a specialist.  Bear in mind at this point, I still don’t know I’ve had Neuroendocrine Tumours burrowing away inside me for years.

Fast forward 1 month, the hydrocele is not yet sorted and I’m speaking to a specialist having been referred for a low hemoglobin score (the trigger for my NET diagnosis).  At this point, I’m convinced there is a connection and amongst the plethora of tests and checks, the specialist also carried out a fine needle aspiration of my left ‘chap’ (I can hear the male audience wincing). The fluid was sent off for testing and subsequently returned negative.  My left ‘chap’ was now back to normal (every cloud…..).  By the way, the hydrocele returned around 2 months later.  I eventually got the date for my hydrocele surgical procedure (hydrocelectomy) but decided to postpone it to sort out another little matter …… Cancer!

I eventually got it repaired in Sep 2011 after 14 months of NET Cancer treatment and had no issues since.   Now…… I can almost hear the cogs turning …… the testes are an endocrine organ etc.  I’ve been through this too and I was still suspicious for a year after diagnosis.    However, I’ve been categorically told there is no connection and there is nothing showing on ultrasound, CT scan or Octreoscan.  4.5 years later, I’m happy there was no connection 🙂

However, I did my duty, I checked my chaps, found an issue and fortunately it was nothing too serious. Crap timing though!

Check em’ lads!

Thanks for reading

Ronny Allan

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NET Cancer – unexpected detours


getty_rm_cancer_diceI’ve mentioned ‘luck’ a few times in the past month following some more ‘cancerversary’ milestones – these tend to make me reflect on my experience.  Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by ‘chance’ or to be more accurate, found following an innocuous set of circumstances.  As we know, Neuroendocrine Cancer (NET Cancer) can sometimes be very difficult to discover and diagnose. However, sometimes with a bit of luck or a chance event, it can be intercepted leading to a much better outlook for the person concerned.  But sometimes there is also a cost and I don’t mean financial (although that is also a very real problem).  Despite me thinking I had been lucky, the ‘little suckers’ had burrowed their way into many places and I now deal with those consequences following significant treatment to get rid of as many as possible.

With my blogging activity, I get to hear other people’s stories, some of which have tweaked my emotions from ‘man style leaky eyes’ to wide-eyed surprise and astonishment, but very occasionally with smiles.  I had one such exchange with Mary who subsequently agreed to let me use her story in a blog.  Mary’s story immediately caught my eye because it not only triggered a wide range of emotions but it made me reflect on the cost aspect I described above.

Mary’s is a lung NET Cancer patient and her tumour was caught early.  Although it was a totally chance discovery, it was in really unfortunate circumstances. Her brother Dan was fighting leukaemia and needed a life saving stem cell transplant. During the checks for her suitability as a donor, the lung tumour was discovered.  Clearly a very worrying time for Mary as she had gone to the hospital to try to save her brother’s life and ended up being admitted with her own cancer diagnosis.  I cannot begin to imagine how that felt for the whole family.  Fortunately Mary’s sister was found suitable and was able to donate,  Their brother later had a successful transplant but unfortunately the cancer recurred and he passed away a short while later.

That’s an amazing story but it invokes a wide range of emotions.  It’s also a very inspiring story about a family coming together in time of crisis.  Mary went to hospital that day to try to save Dan’s life and despite her own diagnosis, she still felt guilty that she was unable to fulfil that task.  However, before his passing, Dan let it be known that he must have gotten sick to save her life.  That’s a heart-warming thought – RIP Dan ❤

I’m very thankful to Mary who agreed to let me publish her story here.  It was actually featured a couple of years ago in their local newspaper – you can read it here – <Click here>

I’d love to hear from others who had a lucky or chance tumour find.

Thanks for reading

Ronny Allan

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Living with Neuroendocrine Cancer – it takes guts


 

it-takes-guts-living-withThe majority of Neuroendocrine Tumours (NETs) are slow-growing.  However, the tumours can be silent (non-functioning) for some years before they start to ‘function’ and inform you of their presence.  Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments.  Moreover, in most cases, the appearance of a functional tumour normally indicates the disease has spread and is now incurable.  However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage 4.  In fact, NETs are one example where surgery can provide prognostic advantages denied in other more aggressive types of cancer.  However, it’s true to say that many NET patients regardless of tumour type or grade and stage of tumour, need to live with quality of life (QoL) challenges, or as my friends in Macmillan Cancer call it – live with the consequences of their cancer.

I sense a change of thinking about living longer with cancer and the reasons are fairly obvious.  More people are now living with their cancer and more of us are living longer. Add the two together and you can see why the big charity organisations are now saying that one in two people will develop cancer at some point in their lives. Ergo – as we live longer we are more likely to come into contact with cancer on the basis that age is a big factor whether someone gets it or not. Now that sounds pessimistic but this needs to be put into context. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%).  This means the number of people who get cancer but die from another cause has doubled over the past 20 years. According to Macmillan Cancer, the cancer story is changing. What was once feared as a death sentence is now an illness that many people survive. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment.   A small bit of research indicates this type of thinking is becoming more apparent in other countries too.

As a result of these new statistics, there is now a big push to focus more on support for people living with Cancer and Macmillan Cancer have some great campaigns in this area – thus why I’m a big fan of theirs.  These campaigns fit nicely into the existing challenges faced by many Neuroendocrine Cancer patients who need support well beyond their diagnosis and treatment and for some time.

I consider these campaigns additional help in fighting our corner.  And of course we need help because for many NET patients there will be no remission, there will be no cure.  I sense governments are now waking up to the fact that all cancer patients need more support after a cancer diagnosis.  NET patients are effectively already in this position and have been for some time.  For example:

Late Disagnosis. 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 reason 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 – i.e. 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.

Awareness of the issues surrounding diagnosis is important and remains so.  However, I believe more focus should be placed on support for Living with Neuroendocrine Cancer and its consequences.

Living with Neuroendocrine Cancer is not easy – it takes guts (both metaphorically and literally).

p.s. I look well but you should see my insides!

Thanks for reading

Ronny Allan

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5 years since liver surgery


flc9jdhxzzs4z2m.jpgFrom day 1 of my diagnosis, I knew my liver was going to need some attention but I had always known that total removal of all tumours would not be possible. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several quite avid isotope activity in this area.

However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery ’round 1′. This occurred in Nov 2010 and I blogged about this as Part 1 and Part 2 stories.  As we are talking about my liver, it’s worth noting that a bland Liver Embolization was carried out prior to ’round 1′ as there was an option to look at the liver whilst I was ‘open’.  However, after 9 hours sorting out my other areas, there was insufficient time.

My surgeon (Mr Neil Pearce) promised me a hard year so after 4 months ‘rest’, I was brought back in for major liver surgery (round 2) which took place on 12 Apr 2011.  The ‘luck’ word has to be mentioned again because my local NET MDT was led by Mr Pearce who just happened to be one of UK’s top GI surgeons and one of the pioneers of Laparoscopic surgery – that is what I was to receive.  In the end, I had a right hepatectomy and a metastasectomy which was calculated to be approximately 66% of my liver removed.  Thank goodness it grows back!

The operation went well lasting 6 hours although it should have been shorter. Mr Pearce unfortunately had to spend a quarter of this time picking through ‘dense right sided abdominal adhesions’ caused by ’round 1′. My liver disease was described as significant on inspection but around 90% of the tumours were removed during this procedure leaving around half a dozen sub-centimetre deposits. Interestingly he said my pattern of disease was more conspicious on intra-abdominal ultrasound than it had been on previous scans.

I recovered quickly after only 5 days in hospital and was back at work in 3 weeks.  My next Chromogranin A had returned to normal readings recognising the reduction in tumour bulk.  My 5HIAA was already back in normal after ’round 1′ and subsequent commencement of Lanreotide.  For those who have not had a liver laparoscopic procedure, the healing time is much quicker and you only have limited scarring.  I had 3 ‘stab wounds’ (that’s my name for the marks!) across the area of my liver and then a 3 inch scar at the base of my abdomen which was used to remove the ‘bits’ of resected liver.

A follow-up chemo-embolization or TACE (Trans Arterial Chemo embolization) was scheduled a few weeks after the liver surgery which was looking to target the remnant liver tumours.  However, this had to be aborted following some routing issues caused by ’round 1′ surgery.

I still have some residual (but stable) disease on my liver but there has been no progression in these 5 years.  It’s no secret that debulking or cyto-reductive surgery can be of benefit even to those with advanced or metastatic Neuroendocrine disease.  I remain thankful for the care and attention I received in the months after my diagnosis.

Thanks for reading

Ronny Allan

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Somatostatin Analogues and delivery methods in the pipeline?


This is my live blog covering new developments in the area of Somatostatin Analogues and delivery systems. 

As most of you will be aware, there are currently two types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) – Octreotide and Lanreotide. Those who have read the drug patient leaflets for both will know those SSAs are also used in the treatment of a condition known as Acromegaly. You can see why the drug is used for both as they control the release of excess secretions of various substances, a problem that has an effect on both conditions. In the case of Acromegaly, the condition is typically caused by benign pituitary tumours that oversecrete the growth hormone leading to elevated levels of IGF-1. Octreotide/Lanreotide is currently the mainstay non-surgical treatment for this condition. For those who were aware of Acromegaly via their Octreotide/Lanreotide treatment, there is a nice infographic explaining it here.

Intranasal administration of Octreotide Acetate

intravail

Nasal Spray Octreotide?

NEW in on 16 FEB 2017

Dauntless Pharmaceuticals, Inc., a privately held biopharmaceutical company focused on the development of specialty therapeutics, today announced the initiation of a Phase 1 clinical study to assess the safety, tolerability, pharmacokinetics, and pharmacodynamics of DP1038, a novel formulation of octreotide acetate for intranasal administration, compared to subcutaneous Sandostatin® (octreotide acetate) injection in healthy volunteers.  DP1038 (octreotide acetate for intranasal administration) is being developed via the 505(b)(2) regulatory pathway for the treatment of acromegaly and neuroendocrine tumors.  DP1038 leverages patented technology for enhanced intranasal absorption developed by Aegis Therapeutics, LLC, a drug delivery and drug formulation company that has successfully licensed its technology to leading pharmaceutical and biopharmaceutical companies whose partners have multiple late stage clinical programs under development. The drug will most likely use an admistration system patiented by Aegis called Intravail® Aegis Therapeutics LLC announced last year that it has been awarded U.S. Patent No. 9,446,134 providing non-invasive metered nasal spray delivery of Octreotide (click here to view the announcement). The enabling Aegis Intravail formulation technology is broadly applicable to a wide range of small molecule and biotherapeutic drugs to increase non-invasive bioavailability by the oral, nasal, buccal, and sublingual routes and to speed attainment of therapeutic drug levels in cases where a non-invasive (i.e., non-injectable) form of the drug is unavailable or where speed of onset is important.  A description of Intravail delivery systems can be found by clicking here.  The news announcing the clinical trial can be found by clicking here.

Clearly this is very early days and the product would need to go through the normal drug approval and acceptance routes etc.  However, a Phase 1 trial using patients is very exciting.

 

Pasireotide

signiforlar-22(added 31 May 16).  Before listing the new stuff in the pipeline (both new SSAs and new delivery methods), I thought I’d also include a section on an ‘in service’ SSA which is not that well-known – Pasireotide (also known as Signifor and SOM230).  This drug is already in the pipeline but only for Acromegaly and Cushing’s Syndrome.  I found it interesting that is able to function as a multireceptor-targeted SSA by binding with high affinity to 4 of the 5 somatostatin receptors (ssts 1, 2, 3 and 5), with the highest affinity for sst5, resulting in inhibition of adrenocorticotropic hormone (ACTH) secretion (Octreotide only binds to ssts 2, 3 and 5). In fact, Signifor represents the first specific treatment for ACTH-secreting pituitary adenomas.  Moreover, it is the first approved medical treatment for Cushing’s disease.  If you’ve read my blog on NET Syndromes, you will see the connection – both involve pituitary tumours and this drug is designed to cater for scenarios where surgery has not solved the problem or is not an option. Interestingly Novartis describes it as a second generation SSA, inferring that Octreotide is first generation.  It comes in short and long acting (LAR) forms with a similar delivery system to Octreotide. It is a US FDA approved orphan drug and is also approved for use in the EU.  Novartis has also submitted additional regulatory applications for Signifor LAR worldwide.   You can read more by clicking here

However, there have been studies in its use for advanced NETs where Octreotide is not working or has not sufficiently controlled the effects of the syndrome.  You can read a full text article about the study results by clicking here (you will recognise some of the authors including Edward M Wolin, Christos Toumpanakis, John Ramage, Kjell Öberg).  My interpretation of the trial conclusion is that there does not appear to be any significant advantages of Pasireotide over Octreotide (however, you should decide for yourself).  The attachment also confirmed studies are ongoing including a potential combination treatment of Pasireotide and Everolimus (Afinitor).  There does not appear to be a study comparing it to Lanreotide.

Somatostatin Analogues – New Delivery Methods in the Pipeline

Glide SDIGlide Solid Dose Injection (SDI®)

New Delivery Method 1 – Glide Solid Dose Injection (SDI®)

(added 19 May 16).  News in of an Octreotide dose to be delivered via a new needle-free solid dose injection system (SDI®).  Glide Technologies, the pharmaceutical development and device company focused on solid dose formulations of therapeutics and vaccines, today announced that it has initiated a clinical proof-of-concept study comparing its novel solid formulation of Octreotide acetate with the currently marketed liquid product (Sandostatin).  According to the company website, it has developed a hand-held ‘solid dose injector’ (“SDI®”). In use, all that is required is push the end of the SDI® against the skin. The patented internal mechanism of the SDI® responds to the slight rise in pressure so created by ejecting the drug dose and pushing it into the subcutaneous layer of the skin, all in a fraction of a second.  In order to make the SDI® reusable Glide has developed small disposable cartridges, each of which contains a single dose of drug. It takes only four steps to load a cartridge on to the SDI® and to inject drug through the skin (Click here to see the video). Glide anticipates that the ease of loading and speed of injection will be features that patients and healthcare workers currently spending minutes injecting liquid drug or vaccine doses will appreciate – hence the likelihood of improved adherence.  Clearly this is very early days.

New Delivery Method 2 – Chiasma Capsule

mycappsa

Octreotide Capsules? Graphic from http://www.chiasmapharma.com/

Acromegaly appears to be in the lead in terms of new delivery methods.  A pharma company called Chiasma is working on an oral version of Octreotide for this condition and they are currently at Phase 3 trials but not without some more hurdles to jump.   You can read the full announcement here.

Clearly we want drugs to be safe and the announcement is another reminder of why drugs take so long to be approved.  Chiasma’s investigational oral octreotide uses their proprietary TPE® (Transient Permeability Enhancer) technology to facilitate gastrointestinal absorption of unmodified drug into the bloodstream safely (i.e. it keeps the drug safe until it reaches its destination).  Hopefully the new trial can convince the FDA to finally approve.

This is potentially an exciting development given that both conditions use the same drugs (Octreotide and Lanreotide injections) so there is always the hope that NETs might be next in line if the capsule version is finally approved.  However, still early days.

New Somatostatin Analogues in the Pipeline

There is news of ‘new kids on the block’ if the pipeline plans and clinical trial successes are realised.  You can read below about two ‘new kids’ below:

New Somatostatin Analogue 1- MDT201 (Q-Octreotide)

757z468_1-SG02126-(1)

MTD201 (Q-Octreotide) is one of the most advanced of its in-house cancer treatments

“Midatech Pharma has reported good results from a pre-clinical study of Q-Octreotide, its treatment for the side effects of carcinoid tumours. The company’s speciality is drug delivery systems and MTD201 (Q-Octreotide) is a sustained release version of Octreotide designed to treat the incapacitating symptoms of metastatic Neuroendocrine Tumours, such as severe diarrhoea and flushing. Q-Octreotide compared favourably with the standard Octreotide product and current market leader Sandostatin for acromegaly and carcinoid syndrome.”

Apparently the delivery method (see picture) is smaller, faster, easier.  Clinical trials due to start end of 2016/beginning of 2017.  Midatech plans on submitting its investigational new drug application (IND) to the U.S. Food and Drug Administration (FDA). Q-Octreotide is a wholly-owned asset of Midatech Pharma and will continue to be developed in-house. Midatech expects to commercialize Q-Octreotide in the United States through its Midatech Pharma U.S. subsidiary.

More to follow when known but in the meantime, please see a useful video here << Video about Q-Octreotide>>

New Somatostatin Analogue 2 – COR-005 (Somatoprim)

There is another new drug in the pipeline currently known as COR-005 (although I can see the term ‘Somatoprim’ used on other searches). COR-005 is an investigational SSA in phase 2 development for treatment of patients with Acromegaly. Although the page on the manufacturer’s website does not mention NETs, an announcement of its progress has just been made at the Endocrine Society’s annual conference for 2016. The announcement states that the drug has “potential additional applications in Cushing’s syndrome and neuroendocrine tumors”.  COR-005 has received orphan drug designation (only for Acromegaly) in the US and EU.  Read about the drug here. There is not enough data to understand how this might benefit NETs and what the differences would be.  Hopefully an update will be available later which will result in a revised blog.

Read the announcement from the Endocrine Society Conference here.  For those interested in Cushing’s Syndrome, (hypercortisolism or high levels of cortisol) this is actually the main driver behind this announcement with information about a new drug in Phase 3 trials known as COR-003.

This information is provided for information only.  There is no intent to indicate at this point that these new drugs will be approved for NETs.  However, it’s another indication that people are working on new treatments which might end up being available at some stage.

The pipeline for new treatments and methods of delivery continues to grow?

Thanks for reading

Ronny Allan

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