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CLL Patient Concerns in the Middle of Coronavirus

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Published on June 10, 2020

Is it safe to begin treatment again for chronic lymphocytic leukemia (CLL) during the coronavirus pandemic? Should I put off my non-cancer related appointments like a dermatologist visit or a colonoscopy?
We covered these topics and more during our recent Answers Now program. Watch as host and CLL patient Andrew Schorr talks to CLL support group leader Jeff Folloder about his experience relapsing after more than six years of remission. Jeff shares how he is doing now, his thoughts on treatment during this time, how he copes with it all and more.

Watch Parts 2 through 4 of this series at Is CLL Care Finally Returning to Normal?CLL Clinical Trials and Treatment During COVID-19 and Will a COVID-19 Vaccine Affect CLL Patients?

This program is sponsored by AbbVie, Inc. and Genentech, Inc.  These organizations have no editorial control. It is produced by Patient Power.  Patient Power is solely responsible for program content.


Transcript | CLL Patient Concerns in the Middle of Coronavirus

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recorded on June 4, 2020

Andrew Schorr:

Welcome to the CLL Answers Now program. I'm Andrew Schorr in Southern California. Joining us is a great panel today. Thank you so much for being with us. There's Dr. Phil Thompson at MD Anderson in Houston, Texas; Dr. John Allan, who is at Weill Cornell in New York Presbyterian in New York City; and Jeff Folloder, a CLL patient like me. Jeff joins us from Houston, Texas, and is, as you'll hear in a minute, really trying to think about when does he have retreatment for CLL?

And so the discussion now is when do you start treatment? Does the pandemic that we're dealing with, and other issues that are swirling around us here in America, does that affect when you start treatment or have treatment again? I want to thank Genentech and AbbVie for sponsoring this program, their commitment to the CLL community.     

I want to start with Jeff. Jeff, you are the leader of one of the biggest CLL support groups online.

Jeff Folloder:


Andrew Schorr:

And you're dealing with CLL yourself, and have for a number of years, and have been told that it's inching up, and you're going to need treatment again.

Jeff Folloder:


Andrew Schorr:

So, first of all, how are you getting your head on straight about that? And also, how does coronavirus, the COVID-19, concern for you as a CLL patient, affect having treatment?

As a CLL Patient, How Are You Dealing with the Coronavirus?

Jeff Folloder:

Well, I was diagnosed about 10 years ago with CLL and was immediately put into watch and wait, which was quite frankly, one of the scariest things that I've ever been through because you're supposed to treat cancer right away, not just sit on your hands and do nothing. That didn't last that long.       

I wound up entering a clinical trial at MD Anderson. I got six and a half years of remission, relapsed, went back into watch and wait, and for some strange reason, I'm not nearly as worried as I was back then. I'm much more confident about the process. I am much more confident in my knowledge of what's going on. So, that level of worry has come down tremendously.          

Obviously, when we're talking about the pandemic, the COVID-19 situation, anyone who is dealing with a chronic or an acute illness that might need hospitalization or treatment in a hospital is very nervous and scared right now because in our minds, the hospital's the last place we want to go.

And I want to give a shout-out to the folks at MD Anderson, because they have been very diligent and very thorough in explaining exactly what does happen when you come to the hospital, what will happen for a clinic visit, what happens for treatment, what is necessary to continue doing, and what's not necessary to continue doing.        

I had an appointment next week at Anderson for a dermatology checkup. And I got the note that said, “During COVID-19, this is just not the most important thing in the world. We're going to put that on hold.” But in two more weeks, I'm in clinic in the main building. I'm showing up for my blood work. I'm showing up for the in-clinic visit. It has to get done. I have to stay on top of it. And I'm extremely confident that the folks at Anderson have their act together.

Andrew Schorr:

Okay. So one other thing I want to ask you about, Jeff, is you see hundreds and hundreds of correspondents on your CLL group, which has more than 7,000 people. Now, the CLL support group on Facebook. I'm part of it. So what's the buzz? What are you seeing among people? Is it the anxiety about, “Oh, my God, should I wait longer? Should go to the clinic? Should I have treatment?” What are you hearing from people? Because, maybe not everybody's as confident as you are.

Jeff Folloder:

Well, the anxiety is absolutely palpable. There are conversations that are going on each and every day. And I think there's a lot of things that go into that anxiety level; different governments, all around the world, are offering different guidance and advice to patients with cancer. And sometimes that's a general cancer guidance. Sometimes it's a specific guidance. And in many cases you have two countries side-by-side offering different guidance to the same patient group. So a lot of people are, frankly, scratching their heads and trying to figure this out on their own. And I'm not sure that they've done a whole lot to calm themselves down, because they don't know what the real best path is right now.

Andrew Schorr:

One question I want to just address to you. You said the dermatology appointment was put off. I had one, but there were only three people in the waiting room. And I do need a dermatologic procedure, because it's something precancerous, let's get it handled. So I'm going to do it. I have to have a COVID test before I have the procedure; they're requiring that.      

Somebody wrote in about colonoscopy. So those are way down, but yet nobody wants to develop colon cancer, or have it advance. Do you have some thought about that in your own mind, Jeff, for just whether its preventative things knowing also we're all at risk for more cancer, skin cancers in particular with CLL? What about you? How are you moving forward?

Jeff Folloder:

That's a great question, and I approach it like a classic risk manager. What are the things that are important and critical right now, and the impact of having it looked at versus deferred? And right now, exactly how MD Anderson described the reason for the delay, if there's nothing critical going on right now, let's defer the appointment. But I've been having that regular dermatology exam on a regular basis. And I know what to look for. And if I did have a mole that had changed or something new that had popped up, I would say to my doctor at MD Anderson, we have a problem here, and it needs to be looked at. And I feel relatively certain that I would be seen fairly quickly at Anderson.

Monitoring my CLL advancement through relapse is high up on my list of things that I'm giving concern to. Not necessarily worry, but I am not in a mode where I'm going to discount the trip to MD Anderson. I'm not going to put it off, because it's important to see where my numbers are. It's important for the doctor to check my lymph nodes. It's important to see if my spleen is getting large. I don't know how to do all of that stuff to myself and communicate it correctly. So I'm going to rely on MD Anderson, and I'm going to rely on the fact that the hospital has set up safety protocols to maximize my safety for when I need to get it done.

Andrew Schorr:

I couldn't agree more. So folks just for me, because I'm living with CLL as well, as we begin to wrap up, is I get IVIG infusions. We've talked in previous programs, it's not protecting us from COVID, but I don't want to get pneumonia. I don't want to get a terrible infection, and it does help with that, knock on wood. I don't want to jinx it, but I haven't had infections at all since I've been getting IVIG. So I go to the local clinic and get it.    

I get the monthly blood tests my doctors need. I've had a telemedicine appointment, and I will see Dr. Kipps, my CLL doctor in the next week or so. And he kind of grinds under my arms and pokes my spleen and does all the stuff you were talking about, Jeff, for him to make an assessment of how I'm doing along with the quantitative stuff.

You guys lay your hands on patients. And sometimes we really need that. And if we've been in a long relationship with you, you're noting how that compares with where we've been.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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