Tag Archive for: patient support

Anxious From CLL Watch & Wait? How to Cope.

Anxious From CLL Watch & Wait? How to Cope. from Patient Empowerment Network on Vimeo.

Many CLL patients who are put on “watch and wait” following a diagnosis. Dr. Catherine Coombs explains this approach and provides advice on how patients can cope with the emotional impact of waiting to treat their disease. 

Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here.

See More from Thrive CLL

Related Resources:

CLL Treatment Approaches: What Are the Types?

Signs It Is Time to Treat Your CLL

Signs It Is Time to Treat Your CLL

Refractory vs Relapsed CLL: What’s the Difference?



What would you say to a patient who has a lot of anxiety about having to wait for treatment? 

Dr. Coombs:

The first thing I would say is that anxiety is normal. More often patients are anxious than not because it’s really hard to be told you have a leukemia and that we’re not going to do anything about it. I think that’s really hard to hear. The way that I try to counsel people is that my role as the doctor is to do no harm. If you have a leukemia and there’s no proven way to make you live longer by giving therapy early on, if you’re in that early stage of CLL where you’re asymptomatic, by offering therapy, all I could do is make you worse.  

I could give you a new side effect, I could add a new cost burden. Until I have data to prove that that’s going to make your life longer, which we do not have yet (maybe that will be different five to 10 years from now, but we do not have that yet), I could only hurt you. So, that’s not what I want to do. I want to have you live and thrive.  

The better thing to do, based on what we know now and what we know our therapies can and can’t do is to do the watchful waiting. But the anxiety is normal. Depending on how severe the anxiety is, I have had patients meet with – at least at UNC we have something called the Cancer Center Support Program, which is a group of psychiatrists, psychologists, therapists that can help talk over what it means to have a cancer diagnosis and not necessarily need therapy.  

Then I also provide education on the other health issues that can come up as part of being a CLL patient even on that watchful waiting program. The thing that we talk about the most is the increased risk for infections, which in the era of the COVID pandemic is a major concern. Luckily, we have a lot of ways to decrease the health risk for COVID, whether it’s due to the administration of vaccines, or monoclonal antibodies, which I think we’ll talk about more later.  

There’re a lot of ways that people can live with it. I do think the anxiety is normal. At least in my own practice, I’ve found that most of the time the anxiety lessens with time. Because it becomes a part of who you are. It doesn’t have to be all of who you are: people can live their lives largely the way they did before with a bit of extra knowledge about things that can come up in the future but may never come up at all.  

Complete Guide To Mindfulness

Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better […]

Peer to Peer Health Networks, Trust … and Facebook

Unless you’ve been visiting another planet lately, you’ve probably seen a headline or two (or maybe fifty) about the rising sense that the social network called Facebook might not be trustworthy when it comes to data privacy for the network’s users. Not that the barrage of headlines over the last year have been the first time the company has had to go into crisis communications mode over data privacy issues – there was a dustup over user privacy that led to a US Federal Trade Commission (FTC) consent decree in 2011, which Facebook has apparently ignored in the ensuing eight years – but the current contretemps over betraying user privacy makes the 2011 headlines look like a radar blip.

The impact on Facebook patient communities, who have made extensive use of the Facebook Groups product to gather together to provide support and resources for people dealing with conditions from ALS to rare disease to hereditary cancer risk, is only just starting to break through the noise over the Cambridge Analytica story, which was how the privacy leaks on the platform were first discovered. The ongoing saga of “did the Russians hack the 2016 election,” with Facebook’s likely, if (maybe) unwitting, part in that, adds to the thundering chorus of “what the heck, Zuckerberg” that’s echoing across the globe.

Peer to peer health advice has become part of any person-who-finds-themselves-a-patient’s self-advocacy routine – just ask internet geologist Susannah Fox, who has made a successful career out of observing what people do with the information access bonanza known as “The Internet.” Facebook has become the go-to platform where people gather to discuss their health issues, usually in Closed or Secret Groups, where all kinds of deeply personal and intimate details of their lives, and health conditions, get shared. Discovering that those personal, intimate details had basically been released into the wilds of the web, willy-nilly, with no way to track where that data wound up, has rocked communities around the world who relied on Facebook to provide the connections they’ve come to depend on to manage their health conditions.

In the slow-motion train wreck that the reveal of this data leakage/breach has been, cybersecurity researchers Andrea Downing and Fred Trotter get a lot of credit for digging into the Facebook API to figure out how a Closed Group could become a data-slurping bonanza for any jackass on the internet. Trotter and health-tech legal eagle David Harlow filed a complaint with the FTC, co-signed by Downing and bioinformatics guru Matt Might, spelling out exactly how Facebook had played fast and loose with their Terms of Service for the product, and also allowing their Developer platform to become a data-miner’s paradise with a “there are no rules, really” accountability framework when it came to data snagging.

Since discovering the security vulnerability in 2018, reporting it to Facebook, getting what amounted to a “so what?” response from the platform, and then trying to figure out how to keep community members’ data safe, Andrea Downing, along with Fred Trotter, David Harlow and, full disclosure, yours truly, along with a host of other patient activists, have formed a collective to figure out how to create a community platform for patient communities *off* of Facebook. Stay tuned for updates, that’s going to be a big job, and it’s going to take time and some serious deep thinking and heavy lifting.

In a piece on the Tincture health channel on Medium, “Our Cancer Support Group On Facebook Is Trapped,” Andrea spells out the issue clearly, emphasizing that the promise of connected community that Facebook offered exists nowhere else … yet. And until it does, patient communities are indeed trapped on the network, since that’s still where they get and give the support so deeply needed by people who get a diagnosis, and who want to find out from someone who’s been there, done that, what their own future might hold.

It’s not an easy-to-solve problem, this betrayal of trust that creates a pressing need for the creation of a safe harbor. I’m putting it before you on the Patient Empowerment Network since I know that everyone who reads the pieces posted here has a stake in peer to peer health, and the trust framework that’s required for peer health resources to be effective. If trust is the new network effect, it’s incumbent on those of us who advocate for robust online peer interaction in health, and healthcare, to call for more trustworthy platforms to support our work.

Let’s get on that.

Empowered #patientchat – The Role of Support and Advocacy Throughout the Patient Journey

Youre Invited! We hope you‘ll join us for our next Empowered #patientchat discussion as we explore the role of support and advocacy at different points along the patient journey. We will be joined by special guest, Laurie Reed (@LReedsBooks).

Listening, distilling, and giving voice to the concerns of others are the skills Laurie Reed developed over 20 years of marketing research for two leading international companies. Laurie holds a Master’s of Science degree as well as a Certificate in Patient Advocacy, both from the University of Wisconsin-Madison.

Throughout her years of professional experience in media communications and healthcare, it has been Laurie’s singular objective to ensure representation of the voice of the customer in strategic planning, decision-making, and policy.

We hope to see you Friday, November 16th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!

Guiding our discussion will be the following Topic (T#:) Questions:

T1: What types of support, if any, did you have when you were first diagnosed? #patientchat

T2: How do you think having/not having support at the time of diagnosis impacted your decisions or course of treatment? #patientchat

T3: During treatment what type of support have you had? #patientchat

T4: How do you think having support during treatment had an impact on your decisions or the course of treatment? #patientchat

T5: How has support changed for you from the time of diagnosis through treatment? #patientchat

T6: How significant of a role has advocacy – whether for yourself, from others, or with the help of an organization or online community – played for you in the course of treatment? #patientchat

Click HERE to learn more about the Empowered #patientchat Series plus read tips on how to participate.

I'll be at the Empowered #patientchat on Friday 11/16 at 10amPT | 1pmET. Join me! Click To Tweet

Regularly scheduled Empowered Patient Chats (#patientchat) are held every other Friday at 10:00 am Pacific / 1:00 pm Eastern and during the chat patients and advocates come to learn from each other and discuss topics of interest to empowered patients.


Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?

When I was first diagnosed with stage three melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.

Today, there are various online communities that offer support. Like a live support group, you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice in their somewhere. I do believe these resources are extremely valuable. If you’re like me, however, you want to find someone who has experienced exactly what you are about to experience, then reach out for a private conversation.

My name is Dan Engel and I recently founded PatientTrueTalk.com to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.

When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc., or basically everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.

Recently launched, PatientTrueTalk.com is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.

I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and that would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors. PatientTrueTalk.com fills that void. To be effective, however, the site needs thousands of survivors who have battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.

My call to action is this: if you are or know a survivor, please register or encourage others to register on the site.

If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.

Tag Archive for: patient support

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