Treatment Archives

27 Feb 2017

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

21 Feb 2017

By Ronny Allan

0 Comments

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Cisplatin/Etoposide, CLARINET, Everolimus, Food and Drug Administration, Ga68 PET/CT, Ga68-DOTATATE, Gastrointestinal NET (GI-NET), High grade neuroendocrine tumour (NET), Immunotherapy, Lanreotide, Liver directed therapy, Lu-177, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, Midgut, NETSPOT, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Octreotide scan, Pathology, Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, PRRT, RADIANT, Somatostatin analogues, Sunitinib (Sutent)

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…

18 Jan 2017

By Ronny Allan

5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Edotreotide, Ga68 PET/CT, Indium 111-pentetreotide, Lutathera, Metastatic Neuroendocrine Cancer, NETSPOT, NETTER-1, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nuclear medicine, Octreoscan (Octreotide scan), Octreotide, Pancreatic NET (PanNET), Paraganglioma, Pentetreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radionuclide, Satoreotide (Lutetium-177), SomaKit TOC

Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…

02 Nov 2016

By Ronny Allan

9 Comments

Neuroendocrine Cancer – Exciting Times Ahead!

Inspiration, Survivorship, TreatmentAfinitor, Chemotherapy, Diarrhea, Everolimus, Functional tumour, Gallium 68 (Ga68), Lanreotide, Lung NETs, Metastatic Neuroendocrine Cancer, mTOR inhibitor, NETSPOT, Neuroendocrine, Non-functional tumour, Nuclear medicine, Octreotide, Octreotide scan, Oncolytic virus, Peptide receptor radionuclide therapy (PRRT), PRCRT, PRRT, RADIANT, Radiolabelled somatostatin analogue, Serotonin, Somatostatin analogues, Somatostatin receptors (SSTR), Telotristat ethyl (Xermelo)

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…

05 Oct 2016

By Ronny Allan

20 Comments

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAlternative medicine, Diet, Glucagon, Glucagonoma, Hypoglycemia, Insulinoma, Liver metastases, Metastatic Neuroendocrine Cancer, Neuroendocrine, Nutrition, Pancreatic cancer, Pancreatic NET (PanNET)

Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read…

01 Oct 2016

By Ronny Allan

1 Comment

Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentCancer grading, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Pancreatic NET (PanNET), Prognosis, Surgery

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…

24 Jun 2016

By Ronny Allan

14 Comments

What you don’t know might kill you

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Surgery

A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…

13 Jun 2016

By Ronny Allan

4 Comments

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, TreatmentAdvanced neuroendocrine cancer, Brain tumour, Breast cancer, Colon cancer, Colorectal cancer, ENETS, Head and Neck Cancer, Intraoperative radiotherapy (IORT), Lung Cancer, NET Centre of Excellence, Pancreatic cancer, PRRT, Surgery

New treatments seem to be appearing every month and that is good news for patients. I have a personal connection to this one though. In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England. This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals). It is the first ever deployment of this type of treatment in UK and Chris and I were…

28 Jan 2016

By Ronny Allan

4 Comments

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

TreatmentBiopsy, Carcinoid tumour, Lung Cancer, Lung NETs, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Radio Frequency Ablation (RFA), Surgery

A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages…

10 Jan 2016

By Ronny Allan

5 Comments

Clinical Trial: Neuroendocrine Cancer drug in the pipeline – Fosbretabulin Tromethamine CA4P (incl combo with Everolimus)

TreatmentActin, Advanced neuroendocrine cancer, Afinitor, CA4P, Combretastatin A-4 phosphate (CA4P), Everolimus, Fosbretabulin tromethamine, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Ovarian cancer, Sunitinib (Sutent), Thyroid cancer, Vascular, Vascular disrupting agent (VDA)

{NEW} added 4 June 2019 From ASCO 2019 conference extract: Of the 17 patients enrolled, 16 completed the 12-week trial. One patient was not evaluable due to noncompliance. No DLTs were observed at day 21. The highest dose of 10 mg daily oral everolimus in combination with weekly 60mg/m2 IV fosbretabulin is the RP2D. No grade 4 or 5 toxicities were noted. Grade 3 toxicities were seen in 5 patients; abdominal pain and hyperglycemia (not related to study drug), fatigue (possibly related), decreased lymphocyte count and anemia (related). Several patients had delay in treatment due to grade 2 AE’s (GI…

22 Oct 2015

By Ronny Allan

7 Comments

Your Money or Your Life

Inspiration, Survivorship, TreatmentAlopecia, Chemotherapy, Hodgkin lymphoma, Immunotherapy, Keytruda, Melanoma, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nivolumab (Opdivo), Opdivo (Nivolumab), Pembrolizumab (Keytruda), Stem Cell

As I have a 2 year old post about Danielle, I wanted to preface it with this message. It is with great sadness that I let you know Danielle Tindle passed away at the end of August 2017 after a prolonged battle with Neuroendocrine Carcinoma. She had been fighting cancer in one form or another for 12 years and became passionate in campaigning for more attention for young cancer patients. I've been following her story for almost 2 years and she has really inspired me. The title of this article is based on the title of a TV programme about…

07 Sep 2015

By Ronny Allan

11 Comments

PRRT and the NHS England Cancer Drugs Fund (now archived information)

TreatmentAfinitor, DOTA-TATE, Everolimus, Gallium 68 (Ga68), Lu-177, Lutathera, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nuclear medicine, Octreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radiolabelled somatostatin analogue, Radionuclide, Yttrium 90 (Y90)

Please note this post is now historic information - PRRT (Lutathera) was eventually approved for use in UK. See the following post for the very latest on PRRT worldwide - CLICK HERE I was extremely disappointed to learn of the decision to remove PRRT (Lutetium or Yttrium) from the Cancer Drugs Fund (CDF). You can read the detail of the decision here: CDF Statement. PRRT has regularly been described by NET specialists and patients as the "magic bullet" due to its potential to shrink or kill tumours. This is the second Neuroendocrine Cancer treatment to be withdrawn this year, after…

14 May 2015

By Ronny Allan

8 Comments

Chasing normality

Living with Neuroendocrine Cancer, Survivorship, TreatmentBlood clot, Clexane, DEXA scan, Lanreotide, Multidisciplinary team (MDT), Pulmonary embolism, Quality of LIfe (QoL), Scan, Somatostatin analogues, Stable cancer, Surgery, Thyroid, Vitamin D

Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured. More people are living with cancer than ever before and the ratio…

15 Jan 2015

By Ronny Allan

4 Comments

Well done NHS!

TreatmentAdvanced neuroendocrine cancer, Coronavirus, COVID-19, NHS, Surgery

I've been reasonably lucky with my health over the years, suffering only the usual common ailments. I was slightly asthmatic as a child but this seemed to disappear when I left school going straight into military service. They say an army marches on its stomach... only partly true but the military did look after my health with regular check ups. I think the only medical emergency I had in my 29 years in that wonderful organisation was being knocked out in boxing training aged 16! When I left the military in 2001, I was fortunate to benefit from free health…

07 Jan 2015

By Ronny Allan

7 Comments

The Mother of all Surgeries

TreatmentChemotherapy, Distal pancreatectomy, Hyperthermic intraperitoneal chemotherapy (HIPEC), Neuroendocrine cancer, Neuroendocrine tumour (NET), Pseudomyxoma peritonei (PMP), Surgery, Total pancreatectomy

My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were…

Category: Treatment