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. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) 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 need access to the best diagnostics and treatments for them; and at the requisite time. There’s even more in the pipeline and I’m hoping to continue to bring you news of new stuff as I have been doing for the last year.
Some of these new diagnostics and treatments will benefit eligible patients who are in diagnosis/newly diagnosed and also those living with the disease. As we’re now in our awareness month, let’s recap:
Many NET Patients will undergo a nuclear scan to confirm CT results and/or to detect further neuroendocrine activity. Basically, a nuclear substance is mixed with a somatostatin analogue, injected into the patient who is then scanned using a 360-degree gamma camera. As gamma cameras are designed to show up radioactive activity; and as Neuroendocrine Tumour cells will bind to the somatostatin analogue, it follows that the pictures provided will show where Neuroendocrine tumours are located. Many people will have had an ‘Octreotide’ Scan (or more formally – Somatostatin Receptor Scintigraphy) which is still the gold standard in many areas. The latest generation of nuclear scans is based on the platform of the Gallium (Ga) 68 PET Scan. The principles of how the scan works is essentially as described above except that the more efficient radioactive/peptide mix and better scan definition, means a much better picture providing more detail (see example below). It’s important to note that positive somatostatin receptors are necessary for both scans to be effective. Europe and a few other areas have been using the Ga-68 PET scans for some time (although they are still limited in availability by sparse deployment). The latest excitement surrounding this new scan is because they are currently being rolled out in USA. Read about the US FDA approval here. You may hear this scan being labelled as ‘NETSPOT’ in USA but this is technically the name for the preparation radiopharmaceutical kit for the scan which includes a single-dose injection of the organic peptide and the radionuclide material. Take a look at a comparison of both scans here:
This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning.
Peptide Receptor Radionuclide Therapy (PRRT)
Similar to above, this treatment has been in use in Europe and other places for some time but is also to be formally deployed in USA if, as is expected, the US FDA approval is positive at the end of this year (Read here). In the most basic terms, this is a treatment whereby a peptide is mixed with a radionuclide and is drip fed over a number of treatments (normally up to 4 spaced out over a year). The concept of delivery of the ‘payload’ to the tumours is actually very similar to the preparation for a radionuclide scan as described above, the key difference is the dosage and length of exposure whilst the tumours are attacked. Once again, receptors are important. The NETTER series of trials showed good results and this is an excellent addition to the portfolio for those patients who are eligible for this treatment. Fingers crossed for the US FDA announcement due by the end of this year. Also fingers crossed that PRRT returns to the NHS England & Wales portfolio of available treatments next year. The Carcinoid Cancer Foundation has an excellent summary of PRRT here.
PRRT and Chemo Combo
Whilst on this subject, I also want to highlight the innovative use of combo therapies in Australia where they are combining PRRT and Chemo (PRCRT). I blogged about this here:
Somatostatin Analogues and their Delivery Systems
Somatostatin analogues are a mainstay treatment for many NET Patients. These drugs target NET cell receptors which has the effect of inhibiting release of certain hormones which are responsible for some of the ‘syndromic’ effects of the disease. Again, receptors are important for the efficacy of this treatment. You can read the ‘geeky’ stuff on how they work here. These drugs mainly comprise Octreotide (provided by Novartis) and Lanreotide (provided by Ipsen). The latter has been around in Europe for 10 years and was introduced to North America earlier this year. Octreotide has been around for much longer, almost 17 years. When you consider these peptides have also been used to support nuclear scans that can detect the presence of tumours; and that studies have shown they also have an anti-tumour effect, they really are an important treatment for many NET Patients. I’ve blogged about new somatostatin analogues in the pipeline and you can read this here. This blog also contains information about new delivery systems including the use of oral capsules and nasal sprays (…….. very early days though).
Treatment for Carcinoid Syndrome
For maintenance and quality of life, the release of a Telotristat Ethyl for Carcinoid Syndrome is an exciting development as is the first new treatment for Carcinoid Syndrome in 17 years. This is a drug which is taken orally and inhibits the secretion of serotonin which causes some of the symptoms of the syndrome including diarrhea. It must be emphasised it’s only for treating diarrhea caused by syndrome and might not be effective for diarrhea caused by other factors including surgery. Read about how it works and its target patient group in my blog here.
The announcement of a clinical trial for the Oncolytic Virus (an Immunotherapy treatment) specifically for Neuroendocrine Tumours is also very exciting and offers a lot of hope. Click the photo for the last progress update.
Earlier this year, AFINITOR became the first treatment approved for progressive, non-functional NETs of lung origin, and one of very few options available for progressive, non-functional GI NET, representing a shift in the treatment paradigm for these cancers. It’s been around for some time in trials (the RADIANT series) and is also used to treat breast and kidney cancer. It’s manufactured by Novartis (of Octreotide fame). It has some varying side effects but these appear to be tolerable for most and as with any cancer drug, they need to weighed against the benefits they bring.
In technical terms, AFINITOR is a type of drug known as an ‘mTOR’ inhibitor (it’s not a chemo as frequently stated on NET patient forums). Taken in tablet form, it works by blocking the mTOR protein. In doing so, AFINITOR helps to slow blood vessels from feeding oxygen and nutrients to the tumour.
Check out Novartis Afinitor website for more detailed information. There’s an excellent update about AFINITOR rom NET expert Dr James Yao here. The US FDA approval can be found here.
………. and relax! Wow, I’ve surprised myself by collating and revising the last 12-24 months. Dr James Yao also agrees – check out his upbeat message in the attached 2 page summary. You may also like another upbeat message from Dr Jonathan Strosberg by clicking here.
Neuroendocrine Cancer – who’d have thought it? ….. a bit of a dark horse.
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9 thoughts on “Neuroendocrine Cancer – Exciting Times Ahead! ”
Well i do have this kind of cancer i been taken octetride for a year now its been able to control all my symtoms, my doctor told me last May that new drugs were developing in Europe and were goin to be available next year here in the US he told he was exited y i should too becouse this new drugs almost neutralized the cancer so i dont know i guess i should have hope….thank you for your blog i just found it it is very informative…..excuse my english it is not my first language
Good luck Simon
Thank you Ronny!
Wasn’t any more stressed out by this than I have been by anything else … I don’t tend to have asthma attacks at all, even under stress. The literature I’ve found never says more than that “several cases” have been reported of anaphylactic reactions to octreotide. Nobody ever gets any more specific, although I did find one case report of successful *densensitization* of a patient to octreotide because of an asthmatic reaction — that was not a NET case but a pancreatitis case in an 11-year-old, so no resemblance to me whatsoever! I am going to ask the oncologist about Lanreotide for sure.
The public at large may not be very aware of us, but science is working hard to help us👍
agree with that. As for awareness, I believe we are currently hampered by flawed messages and probably by a lack of resources. For example. Pancreatic Cancer were interviewed on 1 Nov in national TV as part of their ‘awareness month’. Stormont was turned purple on 1 Nov in support of Pancreatic Cancer. We need more sponsorship. And to get that, we need to move into the 21st century.
Your right, I think sponsorship is the key, product placement. Bought some Mrs Crimbles macaroons today and on the side of the packet is printed their support for breast cancer.
Ronny, thanks for the excellent and informative post as per usual — I’m in a quandary at the moment since I may or may not have had an allergic reaction to octreotide — the *test* dose and a great example of why you need a test dose first. My oncologist is not sure if it was a true allergic reaction, or was more like a mild chest-tightening in a midgut NET patient who has asthma anyway with or without octreotide (albeit very mild and completely controlled for years). We are trying this over again in a month. So if I am allergic…can’t find much online about what the alternatives are, or if any octopeptide will do with octreotide does?
I have heard of some people not being able to tolerate somatostatin analogues but not heard this as a reason. Were you worried or stressed out by the procedure at all, I can only think of that as a possible reason. I too have a very very very mild asthma problem but I’ve never had this issue with Octreotide or Lanreotide. Some people have said they tolerate Lanreotide better than Octreotide so that would be my first suggestion if this persists.