Tag Archive for: Fact or Fiction?

How to Learn More About Your CLL

How to Learn More About Your CLL from Patient Empowerment Network on Vimeo.

How can you learn more about CLL? CLL Expert Dr. Javier Pinilla-Ibarz shares credible resources and valuable tips to help you become an educated and empowered patient. Want more information? Download the Program Resource Guide here.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

Key Signs It’s Time to Treat Your CLL

  

The Truth About Managing CLL Treatment Side Effects

  

The Truth About CLL Treatment Options


Transcript:

Patricia Murphy:        

Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?

Dr. Javier Pinilla-Ibarz:        

Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.

I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.

Patricia Murphy:

Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.

Dr. Javier Pinilla-Ibarz:        

Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”

The Truth About Managing CLL Treatment Side Effects

The Truth About Managing CLL Treatment Side Effects from Patient Empowerment Network on Vimeo.

When it comes to information about CLL treatment side effects, what’s fact and what’s fiction? CLL expert Dr. Javier Pinilla-Ibarz addresses common questions and misconceptions. Want more information? Download the Program Resource Guide here.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

The Truth About CLL Treatment Options

  

Which Molecular Tests for CLL Will You Need?

  

What You Need to Know About Developing CLL Research


Transcript:

Patricia Murphy:        

Let’s talk a little bit about side effects. You mentioned before that sometimes it’s hard to get patients to comply long term with treatment. What kind of things are they dealing with?

Dr. Javier Pinilla-Ibarz:        

So, there is many, many side effects, completely different depending on the drugs, right? So, every drug, as you can imagine, has different side effects. Obviously, the side effects that we discussing these days are the ones in relations to the patients who really have chronic therapies, right?

So, we talking about the BTK inhibitors, specifically ibrutinib. We know some of these patients may have a continuous bruising or really even rashes in the skin. Diarrhea may happen in the beginning. They, for example, may have issues with blood pressure, may have multiple issues that fatigue, joint pains, bone pains, polyarticular arthralgias. So, all of these things that some of them they are acute. Obviously, we’re talking about arrhythmias of the heart, the atrial fibrillation, that may need to be taken care of by cardiology consultation. However, there’s another things that are annoyance. I would discuss, right?

Annoyance that the long run may really affect quality of life on our patient, and obviously, it’s important to really have a really good and honest conversation with – between patient and doctors to see how we can really provide these. I mentioned those reductions or even switching drugs, sometimes is also appropriate in situations where we cannot really fix the problem with those reductions.

It sounds like these side effects, while challenging for patients, can be managed with medications. Are there ways to manage these side effects?

Dr. Javier Pinilla-Ibarz:             

Sometimes. Sometimes, they can be managed through certain medications. Sometimes they are chronic, and we cannot do nothing about. It’s the reason the dose reduction maybe is the best thing.

Patricia Murphy:        

Yeah, yeah. Okay, here’s another fact or fiction game we can play about side effects. “There is nothing that can be done for my side effects,” and we kinda talked about this. “What about fatigue? What can I do about my fatigue?”

Dr. Javier Pinilla-Ibarz:

That’s actually a problem, a problematic one. I think – one of the things that I discuss with my patients sometimes, inpatients and other populations of patients with other comorbid conditions, sometimes, and I don’t say that always, fatigue can really be produced by multiple things. So, we always also emphasize the fact that they need to be seen by private physician to make sure there is no other issues concerning the fatigue, classical in diabetic patients. Something in other patients with other cardiac conditions, right?

However, the truth is that fatigue is one of the main issues in CLL, sometimes happening before therapy or after therapy, with or without according continuous therapy. So, maybe fatigue is one of the big ones and is one of the ones that we really, really hear from our patients very, very often. We may really, as mentioned before, trying to do an adjustment of the doses, but in times of management, that I would say is a challenging one.

Patricia Murphy:        

It’s a tricky one. Sure. How about this one? “There’s an increased risk of secondary cancer and skin cancer from chemo.”

Dr. Javier Pinilla-Ibarz:        

Well, secondary cancer is something that we see very commonly in patients with CLL. So, CLL by themself with no therapy can really predispose patients to have high incidence of secondary cancer. We know this for a long time. How chemotherapy or even the new strategies such as BTK inhibitors or monoclonal antibodies or even – can’t really change that. We don’t know.

What we know is that our patients live longer with these new strategies. So, the question is, one of the hypotheses could be that those patients, because they live longer, they have more chances to develop cancer. Skin cancer is extremely common in CLL patients, very, very common. And always the argument is that, “Well, maybe the immunosuppression due to the leukemia condition, maybe they predisposed to that. The question is, how drugs really eradicate or control a disease can affect this incidence. That’s something that we don’t know.

There’s some anecdotal evidence that some patients, after getting certain therapies, may really have more of this skin cancer. Other patients do better. Still, it’s hard to really generalize.

Patricia Murphy:        

Sure. This one kinda gets back to the doctor-patient relationship. “I shouldn’t bother my team with side effects.” 

Dr. Javier Pinilla-Ibarz:        

Well, obviously there’s a reason we follow patients. We follow patients on a regular basis to really see how they’re doing, what kind of side effects they have, what they are doing. I was mentioning that with fatigue, we may not do much.

Some cases when the patient has with arthritic inflammation of the joints, that we have seen, well, steroids may – for a short period of time – may work. Obviously, oral pains, we still can really prescribe some Tylenol or things that can really improve that pain. For the diarrhea, many things to do. For the cramps for example also, we CoQ10, a calcium supplement, so it’s always seems that we can really introduce, obviously, for the nausea, something easily to treat.

So, I think the best thing is to really have the regular visit with the doctor and discuss. I always really tell my patients always, write it on a piece of paper the things that they need to ask because many, many times, with the rush of the clinics, patients really forget about the really important thing what they come in for.

Tips for Determining the Best CLL Treatment for You

Tips for Determining the Best CLL Treatment for You from Patient Empowerment Network on Vimeo.

CLL expert Dr. Javier Pinilla-Ibarz explains how a treatment regimen is chosen, stressing the important role that patient preference plays in making a decision. Want more information? Download the Program Resource Guide here.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

  

CLL Genetic Testing Explained

  

The Truth About CLL Treatment Options

  

CLL Treatment: What Are Your Current Options?


Transcript:

Patricia Murphy:        

What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?

Dr. Javier Pinilla:        

Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?

But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.

I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.

So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.

So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.

Patricia Murphy:        

Black and white.

Dr. Javier Pinilla:        

Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.

Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.


For latest CLL news and resources, sign up for our newsletter today!

Fact or Fiction? CLL Treatment and Side Effects Resource Guide

Download this Guide

PEN-108_ResourceGuide_FF_CLL1

Download this Guide