UPDATED 5 Apr 2020 – excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020– see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general summary of the effects of treatment in regard risk, second is a video from the Chair of UKINETS about NET patient concerns and the effects on treatment and surveillance. See Article 5 below. Also see COVID-19 pandemic strategy for the interim management of patients with Neuroendocrine Tumours/Neuroendocrine Cancer prepared by the Executive Committee of UKINETS (applicable to UK and Ireland patients) – find the link in Article 5 alongside the video. UPDATED 24 Mar 2020– some questions specifically related to NETs were added – output from Dr Pamela Kunz Oncology and NET Specialist) and Dr. Janice (Wes) Brown (Infectious Disease). At least one question answered by Dr Jame Howe (Surgeon). See Article 4 below.UPDATED 21 Mar 2020 – excellent Q&A from ASCO on cancer patients generally – see Article 1 below. UPDATED 13 Mar 2020 – added a discussion from our own Dr Mark Lewis, an Oncologist who is also a NET patient with MEN1 (he’s had a Whipple procedure to remove a pancreatic tumour) – see Article 3 below.
Hi People, I’ve been receiving many messages asking about NETs and the coronavirus. Please note I’m unable to answer these questions. Also, there have been several posts in my private group but in a more general context. Again, no-one in my private group can answer on specifics in relation to your individual situation with Neuroendocrine Cancer.
I’m aware that people with cancer and cancer survivors, particularly those with compromised immune systems, are likely worried about the potential impact of coronavirus on their health. The best suggestion I have for patients or their primary supporter is to talk with their specialists and health care teams to discuss their options to protect themselves from infection. In terms of keeping up to date, I also suggest to listen to your national disease control agencies (NHS/CDC/etc etc), they are leading on the best information and threats applicable to the general population and it’s mostly based on the advice coming from the World Health Organisation (WHO). The WHO are updating that advice frequently based on data from areas controlling the infection but also from scientists currently undergoing research, there’s still a lot we don’t really know about coronavirus. Listen to these guys and not what you see anecdotally on social media.
WHO – Click here.
UK NHS – Click here. US CDC – Click here. (see this link from US CDC for people who are at higher risk for severe illness)(other countries – please check with your national disease control agencies).
I know many of you heard about the lady with NET who was stuck on the Grand Princess cruise ship off California – I understand she is leaving the boat today (9 Mar) and being transported to her US state facility in North Dakota for quarantine and from there, any NET treatment and surveillance will be considered. The fact that she has NETs, was on that cruise ship, and the cruise ship had 21 cases of coronavirus is a complete coincidence – there is no medical connection between her or NETs and coronavirus. I wish the lady well going forward. For those who missed this story – see the CBS News clip.
I’m constantly on the look out for the best information for my family and of course for myself as a person at risk. In addition to the guidance issued by WHO and amplified by your national disease control agencies, I thought you might like these articles which specifically discuss coronavirus in the context of cancer with one specifically for NETs:
Article 1 is from the American Society of Clinical Oncology (ASCO). This is really an amplification of the WHO advice on person hygiene but now also incudes a great section on what it means to cancer patients in general – Click here.
Article 2 is from Fred Hutch featuring a leading infectious disease expert. The article is entitled “Coronavirus: what cancer patients need to know“. The headline I gathered from this article is “Patients with hematologic [blood] malignancies we believe will have the biggest risk. Also, patients who are in active chemotherapy and bone marrow transplant patients. Those are the ones with the most profound immune deficits.” Read more by clicking hereArticle 3 is from Patient Power featuring Andrew Schorr and our own Dr Mark Lewis (MEN1 patient). Entitled Coronavirus: What Precautions Should Cancer Patients Be Taking?Click hereto watch the video or just read the transcript.
Article 4. Finally, I’m alerting you to a facility hosted by Stanford and NORCAL NETs as this was going to be a topic at the now postponed patient conference in that region. Check out COVID-19 and NETs here. The following contributed to the answers – Dr. Pamela Kunz, MD (Oncology) and Dr. Janice (Wes) Brown, MD (Infectious Disease). Spoiler alert, questions specifically linking to NETs are mostly ‘Unknown’ but I will keep this updated. In my opinion, the general guidance issued by health authorities also apply to anyone with cancer including Neuroendocrine Cancer.
Article 5. Read specific NET advice from Neuroendocrine Cancer UK – click here. And watch an excellent video from the Chair of UKINETS in regard the impact on treatment and surveillance – click here. Also see COVID-19 pandemic strategy for the interim management of patients with Neuroendocrine Tumours/Neuroendocrine Cancer prepared by the Executive Committee of UKINETS (applicable to UK and Ireland patients) – click hereArticle 6. An excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. Click here.Article 7. Frequently Asked Questions for MEN patients – click here.
Check out my latest articles, all centred on COVID-19. I’m looking for feedback on people’s experience in order to inform others. Thanks to those who’ve given me feedback so far, it’s useful.
Check out COVID-19 Risks for Cancer Patients – click here
Check out COVID-10 Anxiety – click here
Check out COVID-19 and Cancer Treatment – click here
Check out my COVID-19 Self Isolation Diary – click here
Check out my COVID-19 Message of Hope – click here
The effects of COVID-19 is the hottest topic in my private group – join in the conversation – click here#NeuroendocrineCancer#COVID19#Coronavirus