Research Today is the Treatment of Tomorrow

Ronny Allan at ENETS 2018
Ronny Allan at NETRF exhibit booth at the European Neuroendocrine Tumor Society (ENETS) annual conference in Barcelona, Spain, March 2018.

by Ronny Allan, NET Patient Activist

Doctors and scientists are always looking for better ways to care for patients with cancer; they are looking for a cure. Cancer research is currently running at full speed, taking advantage of all the technological advances that science has achieved over recent years. But what does that mean in terms of coming up with a cure for cancer?

Whether or not there will ever be a cure for all cancer types is currently a matter of strong and continuing debate; although promising studies are published and covered by the media almost every day, cancer types vary immensely and some cancer types develop in different parts of the body. This makes it very difficult to say that an approach that works for one type will be adaptable to all.

Most people see research as based on anatomical locations and to a certain extent, this is true. However, I’m sensing some new approaches to looking for  potential cures and treatments for cancer, for example on the basis of a tumor’s molecular markers (biomarkers), rather than its location in the body, i.e. they are looking at the genetics, DNA, and the type of tissue where cancers can develop and grow. Only quite recently, the US FDA announced its very first approval of a drug to treat on a tissue/site agnostic basis. What that approval meant is that cancers of the breast, prostate, thyroid, bladder, colon, rectum and endometrium are just some of the cancers that have been found to have a common biomarker and would, therefore, be new possible targets for the drug. This is a very exciting approach for Neuroendocrine Cancer.

There’s currently a good range of treatments for well-differentiated Neuroendocrine Tumors but it’s also clear we need more for high-grade Neuroendocrine Carcinoma. These advances are due to clinical research and clinical trials involving humans. We should thank the doctors and scientists (in both healthcare and the pharmaceutical industries) that we have this range of therapies but we clearly also need to thank the patients who took part in the clinical trials, which led to them being approved.

Not only do these trials test to see if treatments work and how well they work, they also test to see if they are safe and have tolerable side effects. Without clinical trials, there is a risk that people will be given treatments which do not work and which may even be harmful. Also, while there is much emerging research — promising more effective treatments, many of these projects are still in their early stages, being conducted in laboratory experiments. Some potential treatments still have a long way to go before clinical trials in human patients. However, for a patient interested in what clinical trials are out there, it’s also a useful part of the pipeline to keep an eye on.

Today’s research is tomorrow’s treatment but this cannot be achieved without clinical trials. I’ve written several times about specific therapies and the trials that got them approved. I’ve also written extensively about those in the pipeline, as I strongly believe this information should be in the patient domain.

Some are very exciting developments but many are very early in their development but they do give me hope for the future. There are many people involved in research and clinical trials for Neuroendocrine Cancer and as a patient; I do find it difficult to get a holistic view of what is going on out there.

It also sometimes amazes me how difficult it can be for patients to find out about clinical trials that might be of interest to them, particularly when they are not stable and have exhausted most of the approved treatments or those who are continually keeping their options open.

Being an experienced user of the internet, I know where to look and have the knowledge to apply a degree of interpretation and this has enabled me to discover more detail about the availability of clinical trials, including the important factors of exclusion and inclusion criteria, and to a certain extent, the locations. As a stable patient currently, I realize that one day, I might need access to a particular treatment and I’m happy to see that PRRT has really good clinical trials output and is soon to be available in my location. I also keep tabs on other developments in the pipeline as I want to be an informed patient should the need arise.

There are several sites with links to many trials with adequate search tools to filter out ones of interest. Several organizations have developed apps for use on mobile devices – I have an example on my blog. There are many more and most are very easy to use functioning as a portal into the biggest trials database at the NIH Clinical Trials site.

Clinical trials need volunteer patients but finding out about the trials can sometimes be very difficult, particularly if you don’t have access to the internet and particularly if your doctors and specialists are not including these as options. I continue to study trials in the pipeline through my own research and will put these out as articles on all my social media sites. Whilst I was at ENETS in Barcelona in March 2018, I was concerned to discover that some trials are having real difficulty recruiting patients, for example, the COMPETE trial looking at a PRRT variant.

The importance of research and clinical trials is why the NET Research Foundation (NETRF) is fast becoming an important player in the drive to put our condition at the forefront of many clinical and patient advocacy initiatives, including more awareness of research and clinical trials in the wider patient, patient advocacy, and physician organizations.

Many organizations are involved in Neuroendocrine Cancer research, but not on the scale of NETRF. They are in fact the leading private funder of NET cancer research. Since its inception, the NET Research Foundation has awarded $20 million in large-scale, multi-year research grants to leading scientists at renowned research institutions around the world. Although they are US based, they really are the closest thing we have to an international research sponsor.

In fact, when you delve into their activities, you can see that have links to all the regional NET scientific organizations including in North America and Europe and their scientific board includes research doctors from outside the US. Through an annual global call for letters of intent from researchers, they allocate competitive grants on an international basis with recent announcements involving doctors and scientists from many different parts of the globe.

I’m thankful for the work and effort towards finding a cure and new therapies for Neuroendocrine Cancer and I was delighted to support them at the recent ENETS event in Barcelona.

Ronny Allan was diagnosed with NET cancer in 2010. He blogs about his experiences and perspectives as a patient from his home in the United Kingdom to spread awareness of this uncommon cancer. He is recognized internationally as a patient activist and advocate. You can follow Ronny Allan at his Blog, Facebook, Twitter

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Daiva

Thank you Ronny for another informative article and for all your important work as a Patient Advocate on behalf of our international NET community. This is an exciting and dynamic time for cancer research and treatments. I agree it can be challlenging to get a holistic view regarding all available treatments, new research and clinical trials. It can be especially stressful and difficult if one is not feeling well and in urgent need of a new treatment or clinical trial. I appreciate the great resources and research you share in your blog and tremendous support from all our friends @… Read more »

Astrid

Good article Ronny! Interesting is the the part of difficulty in finding patients for clinical trials. I am a NET patient. It also happens I am a doctor. I knew of NET but long, long ago, via medical school. ( I find the association with a zebra really a good one) However, I feel there has been a delay for months in referring me to a specialised team in NET, and I am so grateful that my gp has referred me. I chased this because I found the importance of this out via your websites, Ronny! More spread of information… Read more »

Research Today is the Treatment of Tomorrow