Skip to Navigation Skip to Search Skip to Content
Search All Centers

CLL Patient Advocate Shares Tips on Watch and Wait

Read Transcript Download/Print Transcript
View next

Published on July 16, 2019

As someone who was put on watch and wait for three and a half years, patient advocate Michele Nadeem-Baker shares tips for others living with chronic lymphocytic leukemia (CLL) on staying proactive and positive during this time. Michele also discusses ways to learn more about your CLL sub-type.


Thank you, Andrew and team, for creating the best information source on the web for CLL!

— John, CLL town meeting attendee

Transcript | CLL Patient Advocate Shares Tips on Watch and Wait

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.

Michele Nadeem-Baker:

Hi. This is Michele Nadeem-Baker, your reporter for CLL with Patient Power, and I'm calling today from Dana-Farber Cancer Institute where I was just here for some blood work and an exam, and I'm here to tell you about watch and wait. It's something that we all go through with CLL. Some of us go through it more times than others, and I know some people when you first hear of it you're like, watch and what? Watch and, you know, wait and worry? I know that's some of the things people think W and W stands for, and that is what we tend to do.

But I'm here as someone who does worry, but you should not be worrying. It does not do anything for you to worry. It doesn't help. You should embrace this time because it's time that you don't need treatment, and also it's time where you should be using your time to do your due diligence on CLL, and this is your time to learn everything.

When I was in my initial watch and wait before my front-line treatment, I was in it for three and a half years, and in that time I educated myself about CLL, the treatments that are out there, how science continues to grow with clinical trials. There are new ones that come out all the time, and lucky for us with CLL there are new treatments that are being approved all the time. So use your time to live life and enjoy it and learn about your CLL, and hold on because it's going to be a long ride for you.

So you might wonder, so what kind of CLL do I have? Do I have one that's tougher to treat? How long will it be in watch and wait? Ask your doctor what your genetic markers are or prognostic indicators. Your doctor should be giving you tests that will tell them this. I am 11q, with an unmutated IGHV. Now, someone else could be a 17p with mutated. Someone else could be something else. There's TP53. It's alphabet soup here with CLL, but it's best for you to learn about yours so that when you're reading about different drugs and trials you'll see which ones work best for what you have.

Also, when you ask your doctor how long they think you would have until treatment, this is based on those things. Your genetic markers usually help predict that. But also know that everyone's CLL is somewhat unique, and that it took me three-and-a-half years. Someone with the exact markers I have, it could take them a little less or a little longer, and there are some of you out there who will be lucky enough to never need treatment. And your doctor may be able to tell if you're one of those CLL types from your genetic markers, if you will, or not. So let's hope you're in that group, and you'll never need treatment. I have met people that way, and if you do need treatment just know there's so many out there for us now, and more and more are being approved all the time.

So, as I said, my watch and wait was three-and-a-half years. When I was first diagnosed I wanted to be treated immediately. How many of you out there feel the same way? It's just I'm diagnosed so let's just get this over with, get this gone. Let's eradicate this CLL. I'm a woman of action. I can appreciate that, but there is a reason they don't do that.

So I asked a couple of doctors who were speaking recently at a Dana-Farber event with the Leukemia & Lymphoma Society and the CLL Society, and it was Dr. Matthew Davis of Dana-Farber Cancer Institute, and Dr. (? Phonetic) Samurai from Massachusetts General Hospital. And they concurred. The reason that they don't treat patients immediately when they're diagnosed is because those patients generally will relapse, and they'll need treatment again.

So the theory is why treat someone if they don't need it in the beginning if they're going to relapse and need treatment again a second time? Just save it until they really need it that second time. That's generally when the CLL has taken over a lot. That's how they do it these days, and so it's that you don't get that chemotherapy in your body initially. Now, I know there's some research being done about some of these other new therapies and starting them sooner, but at this point they're still waiting for frontline treatment.

So how many times do we have to go through watch and wait? And you're thinking, I didn't know I had to go through watch and wait more than once, which is what I was thinking, but recently I was told I may need to come off the clinical trial I'm on since I've been on it for so long and stop treatment and then watch and wait again. Oh, my god, I can't believe I'm going to have to go through that, and wait for my CLL to come back in full force until I go on a new trial or a new treatment.

Well, that means I'll start all of this watching and worrying or just keeping on top of research, as you all should be doing, and on top of the latest trends here on Patient Power. This report for watch and wait and explaining what it is for patients is part of our ABCs program that will help you learn the best way to watch and wait and not worry.

I do have something hanging in our office. It's one of those little bubble quotes that we had framed, and it's really been, it's been a good driver for me during when I was in watch and wait and also under treatment. And I want to share it with you in hopes that you can adopt it as well or something similar that will help be your mantra. And it says, Nevertheless, she persisted.

This is Michele Nadeem-Baker for Patient Power, and I thank you for watching today.

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.

View next