Helping Blood Cancer Patients Adjust to the New Normal
By Gwen Nichols, MD, LLS Chief Medical Officer
Since we first learned of the rapid global spread of the coronavirus (COVID-19) the situation continues to evolve at a dizzying pace. LLS has been closely monitoring the fast-changing situation and we understand this is causing confusion and anxiety among our patients and caregivers. We previously shared some important information that blood cancer patients should know about coronavirus which you can read here. You can also visit the CDC website where you can find frequently asked questions.
We all are finding ourselves having to adapt quickly to the new normal. Even here at LLS to protect our staff, blood cancer patients and other constituents in our communities across the country we have made the difficult decision to close our offices through the end of March, and cancel or postpone all in-person fundraising and mission education events through April, and even into May for some. But please know that all staff will continue to work remotely and all patients and caregivers should continue to contact our Information Specialists by phone at 800–955–4572 by email or chat by clicking here.
For more updates please visit this page.
These times bring special challenges to blood cancer patients and caregivers so I’d like to address some of the questions we are hearing from them:
I am hearing the term self-quarantine. What does this actually mean?
To self-quarantine means to isolate yourself from other people because you may have been exposed and potentially infectious to others. Stay inside your home, and do not enter any common areas where you risk exposing other people. Be certain your doctor is aware of your exposure and your need to self-quarantine. To protect family members, you should avoid physical contact, wear a mask, and clean all surfaces you come in contact with. The virus is spread by droplets, (saliva, nasal secretions, sneezing) and can remain on hands and surfaces leading to exposure of others. If you’re self-quarantined in a building with common spaces, stay away from as many people as possible. Your doctor will advise you of the length of time you should self-quarantine.
I am a blood cancer patient or a survivor with a compromised immune system. What are my risks? Should I self-quarantine?
While you are not at greater risk of catching COVID-19, you might be at a slightly greater risk of getting sicker if you are exposed. You should be particularly vigilant about precautions such as hand washing and avoiding crowds, and touching surfaces others touch.
Unless you’ve been exposed, you don’t need to self-quarantine but you should increase social isolation. This doesn’t mean you should become a hermit, but consider minimizing your travel, and try to work remotely if possible. Even after completing treatment, blood cancer patients may not have a fully functional immune system, so social isolation and protection from exposure are particularly important.
Should I get tested for the coronavirus if I have been exposed to someone who has been diagnosed or are experiencing symptoms?
You should contact your doctor to discuss the need for testing.
I’m worried that my therapies might come from overseas and that there might be disruptions in manufacturing and delivery. Should I be worried about drug shortages?
Drug shortages are not presently a concern for blood cancer patients but this could change. We continue to monitor the situation and will provide updates if we learn of any.
If I am self-quarantined how can I get my medication?
If possible, try to prepare in advance by getting additional medications from your pharmacy. See if your doctor will be willing to call your pharmacy and your insurer to get a bigger supply in advance. If you are already quarantined, contact your pharmacy to see if they offer home delivery to bring the medicines, and drop them off outside the door. Another option is mail order pharmacies. You might also ask a family member or friend to pick up your medicines and drop them in a safe place. Do not have direct contact with the delivery person or friend.
If I am self-quarantined, what should I do if I have a medical appointment?
Contact your physician. Unless it is a life threatening condition you might have to postpone your appointment. If you are on treatment and are infected you should discuss with your doctor if treatment can or should be delayed. More providers are offering “telehealth” options, meaning doctors are connecting with their patients via telephone and computers to check on them. Medicare has even expanded coverage of telehealth services to help patients access care without physically needing to go to the doctor in person. This can also be very helpful for caregivers who are needing more routine care.
If I am self-quarantined, how can I get my groceries?
Many grocery stores offer delivery options. You might also be able to ask friends or family to go to the store for you. Just make sure you are not answering the door. You should have them to leave the groceries in an agreed upon location so you don’t have direct contact with the delivery people or your friends or family. You can also consider using online vendors who deliver groceries.
What are some strategies for ensuring good hygiene in my home, particularly as it becomes increasingly difficult to find bleach, disinfectant wipes, etc?
Thorough hand washing with soap and water is the most critical. You can also clean your house with bleach or alcohol. As cleaning supplies become more limited use common sense in terms of how frequently you need to use them.
As many stores are running out of these cleaning products, consider calling your local pharmacies and grocery stores to let them know you have special needs as an immunocompromised patient and ask them to alert you as soon as new supplies coming in. Many online suppliers also have autonotification options to inform you when supplies are back in stock.
As a caregiver, what if I get/or got exposed to COVID-19? What should I do?
You should immediately begin to self-quarantine and you should contact both your own healthcare provider as well as the patient’s doctor to let them know you’ve been exposed. If you are able to call in assistance from other family members or friends to help care for the patient, consider doing so, as long as you do not expose them to potential infection.
What can I do if I am in self-quarantine and feel alone?
Patients who are self-quarantined can use face time and other social media platforms to stay connected with their loves ones. LLS offers online chats, our Patti Kaufmann Robinson First Connection program, and our LLS Community, or they can speak with one of our Information Specialists by phone 9 a.m. to 9 p.m. ET by calling 800–955–4572 or by email or chat at this link.
Should I travel at all if I am a blood cancer patient? (domestic or international)?
It’s important to talk to your doctor to understand your risks, which vary depending on if you have other physical problems, and what your destination is. Certainly, you should not consider travel to any of the restricted countries, including China Japan, Italy, South Korea or Iran and don’t go on cruises until your doctor advises otherwise.
Is it safe for me to go to work?
You should discuss the risks and benefits with your doctor. Discuss with your employer if work from home is an option. Some businesses are more limited than others in offering this capability so you should discuss the options with your employer. If your job requires you to be in an office or have contact with others, you should use social isolation precautions at work including frequent hand washing (soap and warm water scrubbing until you have recited the entire alphabet) and avoiding shaking hands, and other physical contact even if people ”appear” well.
Is it safe to send my children to school?
You should be in communication with your doctor as well as your child’s school to discuss the potential risk of exposure. As you know more schools are closing as a precaution.
We want to hear from you.
Again, I want to remind patients and caregivers to contact our Information Specialists and speak with your healthcare providers. LLS will be posting often on The LLS Blog about the coronavirus (COVID-19), and we need your help shaping our content for patients, caregivers and families. Share a question you’d like our Information Specialists or me to answer in future blog posts by emailing us at firstname.lastname@example.org.