COVID-19 & NETS

Questions last updated 3/23- Resources Updated 3/24

We are grateful to Dr. Pamela Kunz, MD (Oncology) and Dr. Janice (Wes) Brown, MD (Infectious Disease)
of Stanford University for their assistance in answering these questions.

As information is changing rapidly - Please consult with your medical team and the resources listed below for any updates or changes.

We will keep updating this page - we are continuing to collect additional questions and will try to update weekly. Individual questions have the date they were answered or updated.

We welcome you to join our mailing list to be kept up to date.

If you experience symptoms of fever, cough, or breathing problems please call your medical provider immediately to be evaluated for COVID-19.

COVID-19 RESOURCES FOR PATIENTS WITH CANCER

Cancer.Net (English)

Cancer.Net (Spanish)

Cancer Today

CDC website 

CDC Higher Risk Web Page

Ameican Society of Clinical Oncology (ASCO) Coronavirus Resource Center

American College of Radiology Resource Center (excellent links to most medical societies)

Stanford University's COVID-19 Information

UCSF's Novel Coronavirus Resources

UCSF COVID-19 Resources including information for children

Johns Hopkins's Coranavirus Resource Center

FDA Drug Shortage Website

Patient Power interview with Dr. Mark Lewis

NETRF COVID-19 Resource Page

Healing NET Resource Page

Ipsen Somatuline Home Injection Program

Novartis Sandostatin Home Injection Program

American Diabetes Association COVID-19 Page


COVID-19 Information for NET Patients & Families from NANETS.

 

At this point, we do not believe that COVID-19 poses a risk to the liver. At present, there are no specific treatments approved by the Food and Drug Administration (FDA) to treat people with COVID-19, the disease caused by the virus SARS-CoV-2. Some hospitals are trying antiviral treatments approved for other indications, such as remdesivir, which is already in clinical trials for COVID-19. Some other medications are used to treat the more serious problems associated with the infection (like lung inflammation). One such drug being used to treat severe lung inflammation associated with COVID-19 is called tocilizumab, and a known side effect can be abnormal liver function tests.

Posted 6 months ago
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Elevated risks for cancer patients have been reported, but is there any data on specific types or categories? Are NETs specifically at more or less risk?

We do not know the answer to this question. In February, a group from China published their experience in patients…

We do not know the answer to this question. In February, a group from China published their experience in patients with COVID-19 and cancer (Liang et al. Lancet, (21) 3: 335-337, 2020). In this paper, they describe an increased risk of COVID-19 in cancer patients, which is higher than that observed in non-cancer patients in China. However, the number of cancer patients included was small (18 patients), very heterogeneous, and the full details of their cancer history are not known. Therefore, it is difficult to extrapolate from this study. For example, we do not know the cancer stage, types of cancer therapy, or white blood count levels.

Posted 6 months ago
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Are we likely to see issues with the supply of NET medication? How can we prepare?

This is also unknown. However, it is recommended that patients obtain an extra 1-2 month supply of essential prescription outpatient…

This is also unknown. However, it is recommended that patients obtain an extra 1-2 month supply of essential prescription outpatient medications, both for cancer and other indications like high blood pressure and diabetes. The FDA maintains a list of drugs with reported shortages, see our resources links. For injectable medications like Octreotide and Lanreotide, it is reasonable to ask your health care provider if you can receive home injections, as some health insurance will cover. Check our resource links see if your supplier has a program near you. 

Posted 6 months ago
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Are people with lower grade NETs (i.e. Grade 1 Stage 1, receiving only surveillance) less likely to be vulnerable than those with higher grade/stage NETs.

The specific risks are unknown. However, patients on surveillance and with a remote history of surgery are not likely to…

The specific risks are unknown. However, patients on surveillance and with a remote history of surgery are not likely to be immunocompromised, therefore would have an average risk of contracting COVID-19. If you are in surveillance for your NET (getting routine CT or MRI), please ask your oncologist if you can delay the visit, or have a video or telephone visit. Patients on active chemotherapy may have an increased risk of immunocompromise, and therefore a greater risk of contracting COVID-19 or and/or more serious complications.

Posted 6 months ago
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Are there NET specific hygiene instructions with active disease/metastases more than "handwashing." Most of us have worked hard to contain our disease, how best to keep truly safe?

Patients with NETs should follow the same hand hygiene and social distancing as recommended for others. This includes meticulous hand…

Patients with NETs should follow the same hand hygiene and social distancing as recommended for others. This includes meticulous hand washing, 6 ft distance from others, avoiding large crowds, and travel restrictions. Please refer to the CDC website for specifics.

Posted 6 months ago
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Can the effects of the virus trigger syndromes or worsen carcinoid syndrome symptoms?

This is unknown. We do know that patients with carcinoid syndrome can experience triggers from surgical procedures and other stressful…

This is unknown. We do know that patients with carcinoid syndrome can experience triggers from surgical procedures and other stressful situations. Consider having additional short-acting Octreotide available.

Posted 6 months ago
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12

Are NET patients with lung metastases likely to be affected to a greater degree than the general population by COVID-19? 

This is unknown. We have seen that patients with COVID-19 can develop serious respiratory symptoms like cough and shortness of…

This is unknown. We have seen that patients with COVID-19 can develop serious respiratory symptoms like cough and shortness of breath and can require supplemental oxygen in more serious cases. Patients with already compromised lung function from cancer, asthma, COPD may be at increased risk for breathing problems from COVID-19 if they have less respiratory reserves.

Posted 6 months ago
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What does “immunocompromised” mean for people that have had a pancreatic NET resection with spleen removal?

Patients who have had their spleen removed are, by definition, immunocompromised because of a lessened ability to fight certain bacterial…

Patients who have had their spleen removed are, by definition, immunocompromised because of a lessened ability to fight certain bacterial infections. This is why patients received vaccinations following a splenectomy. However, there is currently no data that splenectomy increases risks for viral infections like SARS-CoV-2 (the virus that causes COVID19). All NET patients, with or without a splenectomy should practice strict hand hygiene, social distancing, and travel restrictions.

Posted 6 months ago
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21

Since there are people over 60 that have survived COVID-19, what combination of medicines worked to lessen the virus or help with secondary infections?

The reasons that certain patients recover from COVID-19 and others experience serious events or secondary infections is not known. At…

The reasons that certain patients recover from COVID-19 and others experience serious events or secondary infections is not known. At present, there are no specific treatments approved by the Food and Drug Administration (FDA) to treat people with COVID-19, the disease caused by the virus SARS-CoV-2. Some hospitals are trying antiviral treatments approved for other indications, such as remdesivir, which is already in clinical trials for COVID-19. Some other medications are used to treat the more serious problems associated with the infection (like lung inflammation). One such drug being used to treat severe lung inflammation associated with COVID-19 is called tocilizumab. Secondary infections are treated with medications directed at those infections – like antibiotics for bacterial pneumonias.

Posted 6 months ago
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14

I have an SDHC mutation. Does that factor into risk at all?

SDHC mutations themselves do not lead to an increased risk of acquiring COVID19 or experiencing serious complications. If you are…

SDHC mutations themselves do not lead to an increased risk of acquiring COVID19 or experiencing serious complications. If you are SDHC mutation carrier, it is reasonable to delay biochemical screening if you are up-to-date (performed with the last 18 months). If you have a SDHC mutation and prior disease for which you receive surveillance scans, it is reasonable to delays these scans for a few months. In both of these cases, the risk of COVID19 outweighs the risks of delaying screening or surveillance. If you have an SDHC mutation and are undergoing treatment for cancer, this could increase your risk if these treatments suppress your immune system. [With thanks to Dr. Justin Annes, Stanford Endocrine Genetics].

Posted 6 months ago
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After a PRRT treatment, how long should I self-quarantine?

There is no formal need to self-quarantine immediately following a dose of PRRT as the period of immune compromise can…

There is no formal need to self-quarantine immediately following a dose of PRRT as the period of immune compromise can be delayed and can last weeks to months. We encourage patients receiving PRRT to follow your local “Shelter-in-Place” orders if applicable and all other hygiene recommendations. Please follow your treatment centers release instruction for radiation safety post-PRRT.

Posted 6 months ago
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If I get COVID 19, do I have higher health risk if I had 75% of liver removed 4 months ago having NETS. I'm on Sandostatin injections monthly?

Surgery can suppress a patient’s immune system for weeks for reasons that are not well-understood. Many months following surgery should…

Surgery can suppress a patient’s immune system for weeks for reasons that are not well-understood. Many months following surgery should be enough time for your immune system to recover. In addition, if you are otherwise healthy and have normal blood counts, you are likely to have an average risk of COVID19-related complications and serious illness. [With thanks to Dr. James Howe, University of Iowa Surgical Oncology].

Posted 6 months ago
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