November, 2021 - Ronny Allan - Living with Neuroendocrine Cancer

23Nov 2021 by Ronny Allan 2 Comments

177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

This is all the information available and further details to follow if any is published. Remember, this is not yet an approved treatment, nor is it widely available. Only ever used in experimental/compassionate situations. Not even entered the formal clinical trial system. So even if there was a plan to develop and deploy it (which as far as we know there isn't), and it gained approval, it would be some years before we see it. Whenever I post about a new trial, some people get excited without understanding that these new treatments and capabilities can very often take years to come to fruition and it's also possible that clinical trials can be halted, or that national approval agencies will not approve the final product. Please bear that in mind when…

23Nov 2021 by Ronny Allan 3 Comments

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, Treatment

It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology. As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. Most people might be thinking of Multiple Endocrine Neoplasia at this point (a syndrome that predisposes the patient to multiple primary tumours in different organs). However, I also mean multi-focal…

20Nov 2021 by Ronny Allan 2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first few days I was suffering a lot of fatigue and brain fog from the morphine/painkillers. The thought of posting stuff on Facebook was far from my thoughts. I was receiving…

15Nov 2021 by Ronny Allan 4 Comments

Do we need a new model for Carcinoid Crisis in NETs?

Treatment

(so called) Carcinoid Crisis is one thing that tends to raise concerns in patients and has been bubbling away in NET centres and in patient communities for many years. One of the big problems I have found is trying to place boundaries on it in terms of which types of NET does it apply to. My thinking was that surely it only applies to those tumours which were once described by that ancient misnomer "carcinoid" and yet you hear patients who clearly do not have a tumour that was once described as "carcinoid" talk about it, at least in terms of protection against it. Perhaps some of the confusion lies with the ancient misnomer term, another reason why we need to get rid of it. Many texts I read describe it…

13Nov 2021 by Ronny Allan 6 Comments

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Clinical Trials, Treatment

Some of the key differences between Lanreotide and Octreotide long-acting are:1. Octreotide long-acting needs constituting prior to administration - Lanreotide comes prefilled. 2. Octreotide long-acting is administered intra-muscular, Lanreotide is deep subcutaneous. 3. I probably should add Octreotide LAR cannot be self-injected but Lanreotide can. I suspect this type of delivery system may open up that possibility for Octreotide LAR. So, this clinical trial caught my eye. A version of octreotide long-acting which is prefilled and given subcutaneously. Plus, the manufacturers say it has a much higher bioavailability than the standard product Sandostatin LAR (bioavailability is the proportion of a drug or other substance which enters the circulation when introduced into the body and so is able to have an active effect).CAM2029 might therefore be considered a generic of Sandostatin LAR but better…