The Truth About Managing CLL Treatment Side Effects

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.

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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.