As I discussed in my last post, the Lymphoma Research Foundation conducted a webinar yesterday called "Coronavirus and What the Lymphoma Community Needs to Know."I listened in. I thought it was very helpful.
The LRF said they will post a recording of it later today. I will link it here when it is available, in case anyone would like to listen to it. But I'll make some comments on it here, too, if anyone is interested.
[Update: Here's the link. Thanks, William, for finding it.]
The webinar featured Dr. John Leonard of Weill Cornell, an expert in lymphoma. The webinar was an hour long, and he spent about the first 30 minutes giving some basic information about COVID-19 and the Corona virus, and what we know about it all so far. He was very careful to make clear that what he was saying was true for the United States on March 19. Different parts of the world are experiencing this differently, and things are changing quickly -- what was true a week ago might not be true anymore. So a local expert (like the CDC in the U.S.) or a local doctor are the best sources for the most current information.
For that reason, I'm not going to get into what he said during the first half. There was some good basic information about the virus -- and I value good information. As I've said before, I find comfort in it.
What we do know, we know from only about 2 months of experience, since the virus was first identified and named in January.
We know from that data that when people are infected with COVID-19, about 80% of people will have fairly mild symptoms, and may not even realize they have been infected. It will be, for them, like having a cold. About 20% will end up with more severe symptoms, including about 5% who may end up in Intensive Care.
I'm not bringing up those numbers to scare anyone -- my guess is that you're probably at your "scare" level at this point, whatever numbers you hear.
I'm bringing them up to remind you how to read numbers. Just like reading survival statistics usually means we focus on the worst of them, it's important to remember to take things slowly and carefully. Reading that FL has a survival rate of 10 years doesn't mean you'll die in 10 years. Don't automatically put yourself into the 5%. (More on statistics in a minute.)
Now, the Big Question on my mind, and on everyone's mind, is: How vulnerable am I?
According to Dr. Leonard, there are definitely some higher risk groups among us: people who are older, who have had cardiovascular or immuno-suppressive disease, respiratory disease, and cancer. Those people are not guaranteed to have a bad course of COVID-19, but they are at higher risk. Again, this is about statistics -- a set of numbers that described a big group, not any of the individuals within that group.
So some of us may be in higher risk groups, but it's important to remember that there are not any NO RISK groups. As Dr. Leonard says, everyone should be taking the highest precautions. Don't worry about whether you are higher risk or not -- behave like you you are, and do the things you are being asked to do (from washing your hands to staying away from groups of people to allowing healthcare professionals to do their jobs if you don't need them right now.
In one of the questions he took at the end, Dr. Leonard addressed the question of how to tell if you are immunocompromised or not -- if you are in a higher risk group. I really liked his answer.
He said, basically anyone who has been diagnosed with lymphoma has an "imperfect immune system." You could be newly diagnosed and watching and waiting, or in active treatment with chemo, or in Rituxan Maintenance, or years after treatment. You probably have an immune system that is weaker in some ways than others who have not had the lymphoma diagnosis. If a healthy immune system is a 10, and you had treatment years ago, maybe you're a 9. If you're in treatment now, maybe you're a 5 or a 7.
But no doctor can give you that number. There's no way to tell. It will depend on your own individual experience. If you had treatment a while ago, and you have found yourself prone to infections, then you should take extra precautions. If you seem to get infections at the same rate as people around you, then maybe your immune system is a little less compromised -- but you should still take precautions. Even people with a perfect immune system should be more careful, because it protects others who may not be so perfect.
I found all of that a little comforting. I think about how I have felt over the last few years, and I give myself a number. (I'm not sharing it with you. Figure out your own number.) For me, it's a number that I am fairly comfortable with -- one that makes me feel not too vulnerable, but also one that reminds me to be extra careful. It's a number I can live with.
I hope you can find your own number -- one that keeps you from worrying too much but that also reminds you and others to be extra careful. (And since the problem with numbers is that they seem so definite and real, you can use that to get others to take things seriously if you need to -- "Please wash your hands and stay 6 feet away! My immune system is at a [your number] out of 10!" The number doesn't really mean anything -- you made it up yourself -- but it might help others understand your situation. Just make sure you don't let that number make you upset. Find one that helps you maintain some balance.)
Some other specific issues:
Dr. Leonard says that people who are watching and waiting should continue to do so, as long as they are able. If there's no reason to start treatment, then keep holding off. As he said, "We'll all be smarter in 2 months." We'll know a lot more about the virus and how to handle it. Wait if you can.
If the virus sticks around for a while, it will be better to get infected a few months from now than it is right now. Better to not get infected at al, obviously, but in a couple of months, the health care system will be better equipped to handle things, and we'll know more about it.
If you do feel like you have been infected, call your doctor. Avoid going to the hospital if symptoms are in that 80% group of people with mild symptoms. Certainly go if symptoms get worse, but if you can ride it out at home, do so.
What if you're in active treatment? Should you keep it up? Continue with appointments?
Dr. Leonard said he has been keeping his clinical appointments -- meeting with patients who are in treatment or who are having problems. If you need to see your oncologist, then keep that appointment. Work with the doctor to figure out if the appointment is necessary. For follow-up appointments or non-emergencies, consider video visits, if possible, or talking to the doc on the phone. If it's possible to put something off, then put it off. Dr. Leonard gave the example of Rituxan Maintenance -- it's optional for lots of people. Maybe skipping this month's treatment is fine.
Again, talk to your doctor. Make the choice after a full conversation.
There is more that Dr. Leonard had to say, and I encourage you to listen when's it's available. (As I said, I will post it when I can.)
But, for me personally, I found it all fairly encouraging -- at least as encouraging as it could be in uncertain times. It helped me find my number -- that balance between being cautious (which we should all be) and not obsessing too much over things I can't control. I hope you can find that, too.
If you listened to the webinar, I'd like to hear your thoughts.
But remember the most important takeaway from everything I write -- I'm not a doctor or a cancer researcher, just a Cancer Nerd, a patient who reads and listens a lot. ALWAYS ask your doctor if you have questions. Doctors, not Nerds, are the best sources of information about your own situation.
Take care, everyone.
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