RonnyAllan.NET – Newsletter 1st June 2020

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Newsletters have returned!

I ceased publication of monthly newsletters over a year ago, mainly because they were time consuming to compile and the impact was less then my average post in terms of feedback.  However, since going into COVID-19 lockdown, I’ve given that some more thought.  Going forward, I’ll be sending you out a newsletter each month including an email version as soon as I can get my mailing system software up and running (I’ve been busy during lockdown!)  

Coping with lockdown

During April and May, I decided that I wasn’t going to hide away during lockdown despite the fact that I see myself as someone at risk, not just because of the Neuroendocrine Cancer but also due to a history of chest infections and mild asthma.   Mental health can be as important as physical health in times of stress and anxiety so I took to the outdoors to tell my story of how I was coping.  If course the outdoors is also a garden (yard) and so that counts too!

Back in March I told the story of my own symptomatic period and perhaps one day I might find out if I have antibodies when I’m tested accordingly.  You can read this COVID-19 diary by clicking here.

I’m not quite finished my April/May series of ‘coping’ articles but I compiled them here for you below – enjoy!

Out of Isolation - Article 1
The bench walk
A story of injection, hair cut and a broken tooth
A story of bikes, ponies, wisteria and Vitamin D 
A story of greenery, sun, adventure and Irrfan
A story of footpath etiquette, sheep, donkeys and dopamine
A story of swans, cycling, VE Day and my 124th monthly cancer treatment
A story of nurses, trees and Canada
Article 9 awaiting publication
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Routine Living

Much of the time was spent in the house and new or increased activity included, sitting in the garden (fortunately we have had very good weather in UK), watching TV and box sets, reading, short walks (the longer ones are mainly compiled above). One new thing was online quizzes with the family and video conferencing with relatives rather than phone calls.  Chris’s mum is in a care home and they are on total lockdown, no visitors. Chris was so pleased when they instigated video calls.  I did quite a bit of searching and research on online shopping and I managed to get some grocery slots.  I will not be going into town or shopping for a while yet. Chris sometimes shops but we have a very strict decontamination procedure and a whole room devoted to temporarily isolating  that don’t need to go into fridge or freezer – everything is washed or wiped. This also happens with mail.  It’ll be a while yet before we relax this routine.

Website and Social Media updates

Some of you will have noticed I’ve reduced my Facebook pages from 5 to 2 and this is how I’ll operate going forward.  These Facebook pages are really the social front end to my website – RonnyAllan.NET

Some of you will also have noticed a change in the layout of my website to include more menus for easier navigation and more sharing buttons to help you share my work.  Thanks if you’re using them already  If you wanted to practice, you’ll see them at the top and bottom of this newsletter – share away!

I’m quieter on twitter which is currently quite depressing – I hadn’t realised how many trolls there are out there but I guess many people are quite frustrated by COVID-19.

I’m working on an A to Z facility and it’ll probably take me some months to complete.  It’s quite usable if you just wanted to find an article containing a particular term.  I’m having some technical difficulty with the functionality and need to find time to populate the terms but take a look to see if it’s any use to you now.  Click a term and it will currently take you to the posts containing that ‘tag’.  The A to Z of Neuroendocrine Cancer

Blog Stats
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External work

  • I continue to be contacted by external organisations for some input. I shared a NET survey earlier in May, this came from an unexpected source (WEGO Health) and a sign that our disease is becoming more well known in non-NET circles.
  • Early in the lockdown, I was interviewed over the telephone by a Pharma company after writing an article about their product currently in clinical trials. This was a surprise call but was happy to help.  I think it’ll be appearing in their company newsletter and will try to get a copy to show you.
  • I’m being contracted to make a short patient video about coping with living under COVID-19. If that comes to fruition, I’m sure you’ll get to see it. Stay tuned.
  • I’ve been invited to take part in an online NET conference organised by the Middle East NET Society (MENETS). This is a virtual online event where the speakers will be well known NET Specialists and patients.  I think my talk is centred around “Patient Orientation”. MENETS is in the process of validating schedules and will be ready to publish the initial agenda by the end of July 2020. In the meantime, you can save the date – click here for more details.  Very grateful to my friend Mike Rosenberg for inviting me to speak and for adding my website alongside other illustrious organisations on the MENETS website.  I met Mike in Barcelona – he still owes me a Creon! 

Thanks for all your support in May 2020, it’s really much appreciated

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Tag Cloud (Click to see posts tagged)
5-Fluorouracil (5-FU) 5-HIAA 5-HT 5-HT3 5-HT3-RA 5-HTP 5-Hydrotryptophan (5-HTP) 5-Hydroxyindoleacetic Acid (5-HIAA) 5-Hydroxytryptamine (5-HT) 18F-FDG 18F-FDOPA 24-hour urinary catacholamines and metanephrines 64Cu-DOTATATE 68Ga-PSMA-R2 68Ga edotreotide (TOCscan®) 111In-DTPA-D-Phe1 123I-Metaiodobenzylguanidine (mIBG) 131I-Metaiodobenzylguanidine (mIBG) 177Lu-DOTA-EB-TATE 177Lu-Edotreotide (Solucin®) 177Lu-PSMA-R2 177Lu OPS 201 212Pb-AR-RMX 212Pb-AR-RMX Ac-225 Achlorhydria Acid reflux Acromegaly Actin Addison's disease Adenocarcinoma Adenoma Adhesions Adjuvant surgery Adrenal glands Adrenaline Adrenal insufficiency Adrenal medulla Adrenocortical Carcinoma (ACC) Adrenocorticotropic Hormone (ACTH) Advanced neuroendocrine cancer AdVince Afinitor Albumin Alcohol Alcohol flushing reaction ALDH2 Aldosterone Allergies Alopecia Alternative medicine Alternative therapies American Society of Clinical Oncology (ASCO) Amines Amino acids Amylase Anaphylactic shock Anaplastic Androgrens Angioma Anti-angiogenic therapy Antiacids Antibiotics Antidepressant Antihistamines Antineoplastic therapy Anxiety Appendiceal NET Aretha Franklin Ascending colon Asthma Atezolizumab (Tecentriq) Atopic dermatitis Atrophic gastritis ATRX Autosomal dominant Avelumab Avistan Axid (Nizatidine) Axillary nodes AZEDRA B3 B12 BAM Barrett's Esophagus Bavencio Benign Benign NET Benign tumour Bevacizumab Biased agonist Bile Bile acid diarrhea Bile acid malabsorption Bile acids Bile acid sequestrant Bile duct Bile salt Biliary tract cancer Biological therapy Biomarker Biopsy Bland liver embolization Blood brain barrier (BBB) Blood clot Blood glucose Blood test Blood thinner Blue Book Blushing Bone metastases Bowel cancer Bowel obstruction Bowel surgery Bradykinin Brain serotonin Brain tumour Breast cancer Breast NEN Bronchial NET Bronchopulmonary Neuroendocrine Neoplasms (BP NEN) Bronchoscopy Butt dart C-peptide CA4P Cabometyx Cabozantinib Calcitonin Calcitonin gene-related peptide (CGRP) Calcium Camera pill Cancer Cancer anger Cancer causes Cancer grading Cancer of unknown primary (CUP) Cancerous tumour Cancer registries Cancer research Cancer staging Cancer surveillance Cancer survivor Cancerversary Capecitabine (Xeloda) CAPecitabine TEMozolomide (CAPTEM). Capsule endoscopy CAPTEM Carbocaine Carboplatin Carcinoid Carcinoid crisis Carcinoid heart disease Carcinoid rage Carcinoid syndrome Carcinoid tumour Carcinoma Cardiopulmonary hemodynamic instability Carney complex Catecholamines CB-839 CDKN1B Cerebellum Chemo bath Chemotherapy Chinese dumplings Cholecalciferol Cholestyramine Chromaffin cells Chromogranin Chromogranin A (CgA) Chromogranin B (CgB) Chromogranin C (CgC) Chronic condition Cimetidine Cisplatin Cisplatin/Etoposide CLARINET Clexane Clinical trial CLO test Coeliac disease Cognitive behavioural therapies (CBT) Colon cancer Colon NET Colonoscopy Colony stimulating factor-1 receptor (CSF-1R) Colorectal cancer Combretastatin A-4 phosphate (CA4P) Cometriq Comorbidity COMPETE trial Complete blood count (CBC) Complex regional pain syndrome (CRPS) Constipation CONTROLNETS COR-003 COR-005 Core Biopsy Coronavirus Corticotrophin releasing hormone (CRH) Cortisol COVID-19 Creon CRN00808 CRN01941 Crohn's Disease Cryoablation CT enterography CT guided aspiration CT scan Curative surgery Cushing's disease Cushing's syndrome Cyberchondria Cytoreductive Cytotoxic C‑Reactive Protein (CRP) DAXX Degenerative bone disease Depression Dermal fibrosis Dermatitis Desmoplasia DEXA scan Dexilent Dexlansoprazole Diabetes Diagnosis Diarrhea Diet Differential diagnosis Differentiation Diffuse hepatic steatosis Digestive enzymes Distal pancreatectomy Distant metastatis Diverticulitis DNA Doctor Google (Dr. Google) Do no harm Dopamine Dopamine receptors DOTA-NOC DOTA-TATE DOTA-TOC DP1038 Dry skin DUNE trial Duodenum Durvalumab Dysbiosis Early Diagnosis ECG Echocardiogram Eczema Edotreotide EGFR Electrolytes ELECT study Eliquis (apixaban) Endocrine Endocrine function (pancreas) EndolucinBeta Endoscopic retrograde cholangiopancreatography (ERCP) Endoscopic ultrasound (EUS) Endoscopy ENETS Enterade® advanced oncology formula Enterochromaffin cells Enucleation EPAS1 Epidemiology Epidermal growth factor receptor (EGFR) Epinephrine Epi pens Erythematotelangiectatic rosacea (ETR) Erythrocyte sedimentation rate (ESR) Esomeprazole magnesium Estrogen Ethanol Etoposide EUS Everolimus Exocrine cells Exocrine function (pancreas) Exocrine pancreatic insufficiency Explorer PET scan Familial medullary thyroid cancer (FMTC) Familial NET Famotidine Fasting Gut Endocrine Profile Fatigue Fat malabsorption Fat soluble vitamins Fatty liver Fecal elastase test Fecal fat FH Fibre Fibroblast growth factor receptor (FGFR) Fight or flight Fine needle aspiration (FNA) Fluoro-18-L-Dihydroxyphenylalanine Fluoropyrimidine Fluorouracil (5-FU) Flushing Focal fatty sparing FODMAP FOLFOX Follicular cell Food allergy Food and Drug Administration Foregut Fosbretabulin tromethamine Full blood count (FBC) Functional tumour Ga68 PET/CT Ga68-DOTA-JR11 Ga68-DOTATATE Ga68-DOTATOC Ga68-FAPI PET/CT Ga68-OPS202 Gallbladder Gallium 68 (Ga68) Gamma camera Gastric NET Gastrin Gastrinoma Gastrin pH Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET) Gastroenterologist Gastroesophageal reflux disease (GERD) Gastrointestinal NET (GI-NET) Gastroscopy Generator (radionuclide) Genetics Genetic testing Genito-urinary NET Germline genetic mutations Glucagon Glucagonoma Glycated Hemoglobin (A1C) Goitre Gonadotropin-releasing hormone (GnRH) G protein-coupled receptors (GPCR) Grade Grading Granulinoma Graves’ disease Growth hormone (GH) Gut Gut Flora H2 blockers H2 receptor antagonist (H2RA) Haemangioblastoma Haemoglobin (hemoglobin) Hashimoto's disease HbA1c Head and Neck Cancer Heart disease Heat intolerance Hedinger syndrome Helicobacter pylori Hemoglobin Hepatic arterial embolization Hereditary cancer syndrome Hereditary pheochromocytoma/paraganglioma syndromes High-intensity focused ultrasound (HIFU) High Grade NEC High grade neuroendocrine neoplasm (NEN) High grade neuroendocrine tumour (NET) Hindgut Histamine Hodgkin lymphoma Hormonal crisis Hormones Hormone therapy Hospice care Hotspot HPA axis Hurthle cell neoplasm Hydrocele Hydrocelectomy Hydrogen breath test Hydronephrosis Hyperadrenergic Hypercalcemia Hypercortisolism Hypergastrinemia Hyperglycemia Hyperhidrosis Hyperinsulinism Hyperparathyroidism Hypertension Hyperthermic intraperitoneal chemotherapy (HIPEC) Hyperthryroidism Hypervascularity Hypocortisolism Hypoglycemia Hypokalemia Hypotension Hypothalamus Hypothyroidism IBS IBS-C IBS-D IBS-M Ileum Immunotherapy Imodium Incidence Incomplete emptying Incurable cancer Indium 111-pentetreotide Inflammatory bowel disease (IBD) Insulin Insulin-like growth factor 1 (IGF-1) Insulinoma Intermediate grade NET International Classification of Diseases (ICD) International Classification of Diseases for Oncology (ICD-O) Intestinal ischaemia Intraoperative chemotherapy Intraoperative hypertensive crisis Intraoperative radiotherapy (IORT) Invisible illness Iobenguane I 131 Ipilimumab (Yervoy) Irinotecan Iron Deficiency Anaemia Irritable bowel syndrome (IBS) Islet cell Islet of Langerhams Jaundice JR11 Kallikrein Karzinoide Ketogenic diet Keytruda Ki-67 Lactulose Lanreotide Lansoprazole Laparoscopic surgery Large cell neuroendocrine carcinoma (LCNEC) Lenvatinib (Lenvima) Lenvima Leukaemia (US Leukemia) Levoketoconazole (Recorlev) Levothyroxine Lipase Liquid biopsy Liver Liver directed therapy Liver embolization Liver metastases Loperamide hydrochloride Low Grade NETs Lu-177 Lu 177 dotatate Lung Cancer Lung NETs Lung nodules Lutathera Luteinizing hormone (LH) LUTIA clinical trial Lymphadenectomy Lymphatic system Lymphedema Lymph nodes Lymphoma Magnetic resonance imaging (MRI) scan Malabsorption Malignant Mammalian Target of Rapamycin (mTOR) Mammalian target of rapamycin (mTOR) inhibitor Mammogram MANEC Marcaine Mast cell Mastocytosis MDH2 Medical food Medicines and Healthcare Products Regulatory Agency Medullary thyroid cancer (MTC) Melanoma Melatonin MEN1 syndrome MEN2 syndrome MEN2A syndrome MEN2B syndrome MEN4 syndrome Meningioma Menopause MENX Merkel cell carcinoma Mesenteric root Mesentery Metanephrines Metastatic Neuroendocrine Cancer Metronidazole MIBG scan Microsatellite instability-high (MSI-H) Midgut Mineral Misdiagnosis Mitotic rate Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN) Molecular markers Monoamine oxidase inhibitors (MAOIs) Monoclonal antibodies MTD201 mTOR inhibitor Multidisciplinary team (MDT) Multikinase inhibitor Multimodal treatment Multiple Endocrine Neoplasia (MEN) Multiple myeloma Multi tyrosine kinase inhibitors (TKIs) MYCAPSSA®   Myeloma National Cancer Institute National Institute for Health and Care Excellence (NICE) National Institutes of Health Nausea Neoplasm NET Cancer Day NET Centre of Excellence NETDetect NETest NETSPOT NET syndromes NETTER-1 NETTER-2 Neuroblastoma Neuroendocrine Neuroendocrine cancer Neuroendocrine carcinoma (NEC) Neuroendocrine neoplasm (NEN) Neuroendocrine tumour (NET) Neurofibromatosis type 1 (NF1) Neurokinin A (NKA) Neuropeptide K Neurotensin Neurotransmitter Nexium NF1 NHS Niacin Night sweat Nivolumab (Opdivo) Nizatidine NKA No-Carrier-Added Lutetium-177 (n.c.a. Lu177) Nodule Noid Non-functional tumour Non-small cell lung cancer (NSCLC) Noradrenaline Norepinephrine North American Neuroendocrine Tumor Society (NANETS) Novocaine NT-proBNP Nuclear medicine Nutrition Nutrizym Octreoscan (Octreotide scan) Octreotide (Octreotide acetate) Octreotide-RP Octreotide scan Octreotide soak Ocular Rosacea Omega 3 Omeprazole Omeprazole and sodium bicarbonate ONC201 Oncologist Oncolytic virus Ondansetron (Zofron) Opdivo (Nivolumab) Osteoblastic activity Ovarian cancer Ovarian NEN Overactive thyroid Overdiagnosis Oxaliplatin (Eloxatin) Oxitriptan Oxytocin Paclitaxel Palliative care Palliative treatment Palpitation Pancreas Pancrease Pancreastatin Pancreatic adenocarcinoma Pancreatic cancer Pancreatic enzyme replacement therapy (PERT) Pancreatic insufficiency Pancreatic NET (PanNET) Pancreatic polypeptide (PP) Pancreatic pseudocyst Pancreatic uncinate process Pancreatin Pancreatogenic diabetes Pancreoprivic diabetes Pancrex Pantoloc control Pantoprazole Papillary thyroid cancer Papulopustular (acne) rosacea Paraganglia Paraganglioma Paraneoplastic syndromes Parathyroid gland Parathyroid NET Parotid gland NET Pasireotide Patent foramen ovale (PFO) Pathology PD-1/PD-L1 Inhibitors PDR001 Pellagra Pembrolizumab (Keytruda) Pemetrexed disodium PEN-221 Pentetreotide Pepcid (Famotidine) Peptide Peptide receptor radionuclide therapy (PRRT) Peripheral Serotonin Peritoneal carcinomatosis Pernicious anaemia Pheochromocytoma Physician Physiological uptake PI3K inhibitor Pituitary gland Pituitary NET (PitNET) Plasma 5HIAA Platelet-derived growth factor receptor (PDGFR) Pleural Fibrosis pNET Poorly differentiated Post operative seroma PPoma PRCRT Pre-existing condition Prediabetes Pressor amines Prevacid (Lansoprazole) Prevalence Prilosec (Omeprazole) Probiotic Prognosis Progressive cancer Proinsulin Proliferative rate Prostaglandin Prostate Cancer Protease Proteasome inhibitors Protein kinase inhibitor Protonix (Pantoprazole) Proton pump inhibitors (PPI) PRRT Pruritus Pseudomyxoma peritonei (PMP) Pulmonary embolism Pulmonary fibrosis Pustule PV-10 Q-Octreotide Q-Sphera Quality of LIfe (QoL) Rabeprazole (Aciphex) RADIANT Radioactive iodine Radioembolization Radio Frequency Ablation (RFA) Radioimmunotherapy Radiolabelled somatostatin analogue Radionuclide Radiopeptide Radiotherapy Ranitidine (Zantac) Rash RB1 RECORLEV (levoketoconazole) Rectal cancer Rectal NET Red blood count (RBC) Remission Renal cell carcinoma (RCC) Renal insufficiency RET Retroperitoneal Fibrosis Retroperitoneum Rhinophyma Right hemicolectomy Rosacea Rose Bengal Sandostatin Sapanisertib Satoreotide (Lutetium-177 OPS-201) SB NET Scan Scanxiety SCF node Scleroderma SDHA SDHAF2 SDHAF2(SDH5) SDHB SDHC SDHD SEER Selective Internal Radiotherapy (SIRT) Selective Serotonin Reuptake Inhibitor (SSRI) Serotonin Serotonin and norepinephrine reuptake inhibitor (SNRI) Serotonin syndrome Serum ferritin Serum serotonin Setrons Side effect Siegfried Oberndorfer Sigmoidoscopy SIGNIFOR® (Pasireotide) SI NET Skin NET Sleep hyperhidrosis Small cell lung cancer (SCLC) Small cell neuroendocrine carcinoma (SCNEC) Small intestine bacterial overgrowth (SIBO) Small intestine NET (SI NET) Solid tumour Solucin ® SOM230 SomaKit TOC Somatoprim Somatostatin Somatostatin analogues Somatostatinoma Somatostatin receptors (SSTR) Somatostatin receptor scintigraphy (SRS) Somatuline Autogel (US: depot) Spartalizumab SPECT Spider Veins SPINET Splenosis Splenunculus Squamous cell carcinoma SSTR-PET St. John's wort Stable cancer Stage Standardised uptake value (SUV) Steatorrhea Stem Cell Sternoclavicular joint Stomach cancer Stomach cramp Stomach ulcer Streptozotocin (Zanosar) Stress Subpectoral lymph node Substance K Substance P Sulfatinib Sunitinib (Sutent) Superior mesenteric artery Superior mesenteric vein Supplements Supraclavicularfossa Supraclavicularfossa (SCF) lymph nodes Surgeon Surgery Surufatinib Surveillance Survivor Survivorship Sweating Sweet's syndrome Symptom Syndrome Tachycardia Tachykinin Tagamet Targeted alpha-emitter therapy (TAT) Targeted therapy Tecentriq (Atezolizumab) Technetium-99m (Tc-99m) Telangiectasia Telotristat ethyl (Xermelo) Temozolomide (Temodal) Terminal Cancer Terminal Ileum Testicular cancer Testosterone Tetracycline The 5 E's Theranostics Thymic NEN Thyroid Thyroid cancer Thyroiditis Thyroid NET Thyroid stimulating hormone (TSH) Thyroxine (T4) Tidutamab TNM staging system TOCscan® Total gastrectomy Total pancreatectomy TP53 TPH1 TPH2 Transarterial chemo embolization (TACE) Transarterial embolizaton (TAE) Transarterial radioembolization (TARE) Tricyclic antidepressant Triglycerides Triiodothyronine (T3) Tryptophan Tryptophan hydroxylase (TPH) Tuberous sclerosis (TS) Tumor board Tumour marker Tumour mutational burden (TMB) Type 1 diabetes Type 2 diabetes Type 3c diabetes Type 3c diabetes mellitus (T3cDM) Typical lung NET Tyramine Tyrosine kinase inhibitor (TKI) UKINETS Ulcerative colitis Ultrasound Underactive thyroid Ureter Vaccine Vanillylmandelic acid (VMA) Vascular Vascular disrupting agent (VDA) Vascular endothelial growth factor (VEGF) Vasoactive amines Vasoactive intestinal peptide (VIP) Vasoactive peptides Vasodilation Verner-Morrison syndrome Vertebral haemangioma Vimovo VIPoma Vitamin A Vitamin ADEK Vitamin B1 Vitamin B2 Vitamin B3 Vitamin B5 Vitamin B6 Vitamin B7 Vitamin B9 Vitamin B12 Vitamin B complex Vitamin C Vitamin D Vitamin E Vitamin K Von Hippel-Lindau (VHL) Syndrome Von Recklinghausen's disease Water soluble vitamins Watery diarrhea, hypokalemia, and achlorhydria (WDHA) syndrome Well differentiated Wermer syndrome Wheezing Whipple's triad Whipple procedure White blood count (WBC) World Health Organisation (WHO) X-ray Xermelo (Telotristat ethyl) Yervoy Yttrium 90 (Y90) Zantac Zebra Zinc Zofron Zollinger-Ellison Syndrome

2 thoughts on “RonnyAllan.NET – Newsletter 1st June 2020

  • Alison mcclure

    Hey Ronny, Paul here myself and Allie share the same email so it may show as Alison in comments.
    I just wanted to say your posts and photos during this covid 19 have been uplifting, motivational and interesting for us all to read and a great example in how you have handled living through this crisis. I feel your work and sharing on living with Neurodocrine cancer is incredible and we cannot help but pick up on the FUN you and Chris have had on your various days out.

    Thank You
    Paul & Allie

I love comments - feel free!

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