By Jennifer Ahlstrom | Posted - Mar 17th, 2020

 

 

 

 

Do’s and Don’ts for the Coronavirus for Multiple Myeloma Patients (by Myeloma Experts)

Here are some Twitter tips from myeloma experts that include Dr. Rafael Fonseca of the Mayo Clinic (@RFonsi1), Dr. Vincent Rajkumar of the Mayo Clinic (@VincentRK) and Dr. Cesar Rodriguez of Wake Forest University (@MyelomaTips).

As Dr. Fonseca stated in his Twitter thread: “The steps we individually take will make a huge difference in how we are all able to weather this crisis.”

DO 1:  Follow advice diligently by all health authorities. Practice social distancing. To reduce the number of new cases; interact with fewer people and behave in safe ways (distance, hand washing, etc.). (CDC website, FDA website) Dr. Rafael Fonseca

DO 2: Talk to your doctor if you have problems you are concerned about in regards to your health. Most doctors are ready to provide flexibility in how you contact them. Dr. Rafael Fonseca

DO 3: If you believe you are sick, but only mildly so, use the phone to start. Many centers are setting up drive through testing stations. You do not want to go to a crowded waiting room area where many others will likely be sick and expose yourself. Dr. Rafael Fonseca

DO 4: We know children seem to have better outcomes and can be asymptomatic. But keep in mind they could still infect grandma and grandpa. Create physical distance with them. They do not need to be isolated but avoid direct contact if in doubt. Use the phone and video too. Dr. Rafael Fonseca

DO 5: Offer you assistance to the elderly with grocery runs and other errands. If the curve of the pandemic is bent downwards, in time they will be able to be more social. But it is prudent for us to be extra careful for now. Dr. Rafael Fonseca

DO 6: Think about creative ways in which people can help each other with children as schools close. Some people will still need to go to work and will need help with their care (e.g., MDs and nurses). Think about ways in which possible spread is also minimized. Dr. Rafael Fonseca

DO 7: Think about the economic needs of those who live by hourly wages and tips. Many people are feeling huge economic pain. If you pay staff consider continuing with payment as much as possible, even if you don’t use services (e.g. childcare, nanny, etc.) Dr. Rafael Fonseca

DO 8: Think about creative ways in which we will all help each other. People are coming up with great ideas that will help ease the burden of what we are living through. Human ingenuity has no boundaries. Dr. Rafael Fonseca

DO 9: It is hard, but keep a level head! Panic does not help you or others. Our ability to make decisions is improved if we stay calm. Being calm does dot denote you are careless. The situation is serious but you help by being calm. Dr. Rafael Fonseca

DO 10: Think about back-up plans if you were to become ill. How can others help with family needs and children as you go through the disease? Dr. Rafael Fonseca

DO 11: Be judicious in determining what to do if you have been exposed to someone known be to infected. Some good data suggest self-distancing will help the curve a lot. This is important as people can still be infectious even if still asymptomatic. Dr. Rafael Fonseca

DO 12: KEY ONES - Wash hands and don’t touch your face - Avoid touching face - Practice social distancing - Heed sound advice Dr. Rafael Fonseca

DO 13: Puzzles, games and books are a great alternative to TV. Dr. Cesar Rodriguez

DO 14: Contact your Primary Care Provider and for guidance if you show symptoms of Coronavirus. Dr. Cesar Rodriguez

DO 15: Ask healthy family members or friends to help you get basic supplies for home to minimize exposure. Dr. Cesar Rodriguez

DO 16: Avoid crowds but continue to stay active. Consider home exercises or walking outdoors if allowed. Dr. Cesar Rodriguez

DO 17: Talk to your doctor about avoiding unneeded checkups (especially if not on active treatment or in remission). Dr. Cesar Rodriguez

DO 18: Watch this page - one of the best up-to-date resources of cases (NY Times) https://www.nytimes.com/interactive/2020/us/coronavirus-us-cases.html. Dr. Vincent Rajkumar (keep in mind there has been limited testing and it is most likely underreported)

DO 17: Talk to your doctor about avoiding unneeded checkups (especially if not on active treatment or in remission). Dr. Cesar Rodriguez

DO 18: If myeloma patients are already on transplant schedule, we recommend offer to delay the whole process (collection and storage) until the corona epidemic is over. If patients are already on site, collect cells but delay the transplant. For patients who need the transplant for progressive disease, or very high risk disease and expected early relapse and cannot wait to delay, proceed with transplant. Thankfully most myeloma treatments can be done outpatient. And at home. And most patients will be well controlled using these approaches. We are not necessarily delaying transplant until relapse. But for the time being till this is over. Dr. Vincent Rajkumar


DON’T 1:  Don’t panic. These are tough times and many are already suffering great anxiety and stress.  But we will get through this. Be a voice of calmed reason in your family and your community.

DON’T 2: Don’t listen to self-anointed pundits who predict the worse.  The truth is no one knows what the ultimate outcome will be. Models consider optimistic and pessimistic scenarios- immediately people focus on the worst as reality.  We simply do not know.

DON’T 3: DON’T assume that if you get infected you will be seriously ill.  Most people seem to fare well.  We know some people can have a very serious/deathly illness but most can recover.  This is especially true for the younger and healthier.  Be mindful, but don’t panic.

DON’T 4: DON’T assume that we know yet what the case fatality rate is for #COVID19. It has been very hard to get tests. Most of the people tested are the very ill who need acute care.  We simply do not know how many of those infected die from the disease.  No one knows!

DON’T 5: DON’T assume back of the napkins calculations as true.   For instance, we simply DO NOT KNOW how many of this infected need ICU care.  You can’t determine that by simply looking at other countries.  It is a percent of the illest that is being reported.

DON’T 6: DON’T be nihilistic. While it is serious many are working fast to develop knowledge, treatments and later on vaccines. There will be help and solutions. Some early signs for certain drugs suggest they may help and need to be tested further. Dr. Rafael Fonseca

DON’T 7: DON’T mindlessly repeat that the pandemic is going to continue to expand exponentially until all are infected. It follows more of a logistic pattern (great video from CDC) Reduce the number of interactions and behave safely. Dr. Rafael Fonseca

DON’T 8: DON’T show graphs and simply spew “We are only 11 days before Italy!” That helps no one and we just don’t know. We have different populations, age demographics, health systems, number of ICU beds, etc. Nothing is yet predetermined. Dr. Rafael Fonseca

DON’T 9: DON’T assume the word “pandemic” is synonymous with death. It only means there is a clear global spread of the infection, which we have. Dr. Rafael Fonseca

DON’T 10:  DON’T  assume all will be clear by the summer. There is no indication that the season will be over during the summer. It might not. We hope it will be better controlled, but there is no indication of seasonality. Dr. Rafael Fonseca

DON’T 11: DON’T assume you cannot help unless you are in healthcare. Defeating this might require the expertise of engineers, administrators, supply chain specialists, data wonks, and everyday citizens. Do you part. Dr. Rafael Fonseca

DON’T 12: DON’T assume it cannot be controlled. While the number of cases is higher now the world has been able to deal with other very serious events similar to this. Dr. Rafael Fonseca

DON’T 13: DON’T engage in finger-pointing, blame or politics. this is not the time. Let us focus our energy on solutions. Dr. Rafael Fonseca

DON’T 14: Don't’ wait until you’re out of meds to refill - plan ahead (especially aspirin, acyclovir, and other prophylactic antibiotics you take) Dr. Cesar Rodriguez

DO find hope. There will be pain but even in the worst-case scenario models humanity will go on. There are early indicators of hope as we have seen from what is going on in China and the South Korean response. But we must all do our part. Dr. Rafael Fonseca

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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