Thursday, June 13, 2013

New Adverse Event for Ibrutinib: Brittle Nails

The Registration Trials that are ongoing are purposed not only to find out if the strong response rates seen in the earlier phase 1 and 2 trials hold up with larger and different populations of patients, but also to look for early signals of unanticipated side effects of adverse events.

But problems with medications can show up very late in the game.

Who would have guessed that pregnant mothers who received DES (Diethylstilbestrol) in what turned out to be a futile attempt to reduce the risk of miscarriage would see a problem a generation later when it was realized that their daughters exposed in utero had an increased risk of a rare vaginal and cervical cancer.

And while a good number of the brave first patients out of the handful that entered the phase 1 trial of ibrutinib are still doing well on drug, at the time of this writing I don’t believe that anyone has been on the medicine for even four years, and most of us for much shorter times.

Therefore we should not be surprised as our experience grows with the new generation of treatments heading rapidly for FDA approval when new possible concerns pop up.

I didn’t get a chance to ask Dr. Byrd when he spoke on the early results with ibrutinib in Stockholm at the same meeting where I too lectured (I gave a patient’s perspective on having CLL and how my life was impacted by both the disease and by my dramatic response to the new medicine) about the incidence or statistical significance of what to me was an unknown adverse event: brittle fingernails.

That explains why my career as a hand model will never get off the ground. My fingernails break easily and I must keep then very short at all times to avoid them tearing. Reaching in and out of my carry-on bag with its computer sleeve and tight pockets where I stuff my papers and medications is like a dance in a minefield for my fingertips, and they are often the worse for wear after my travels.

I also am certain just as we all know that when someone asks us if our nose is itchy, our noses are more likely to itch, awareness of the possibility of any problem increases the incidence of the problem. I will now join the ranks of those ibrutinib subjects reporting brittle nails, though for me the fashion consequences are much less significant compare to the women who enjoy growing and painting their nails and who, I bet, were much more astute and observant than me in pointing out this problem early on.

I just thought it was a consequence of my vegan way. Maybe it is.

In the big scheme of things, jagged fingernails are not a biggie. Sure beats pneumonia or neutropenia. Still could it be a marker of a bigger problem?

What’s next? Split ends? This isn’t so crazy. Many chemo drugs not only cause your hair to fall out, but when it grows back, it grows in curlier due to the broken bisulfide bonds.

Will our future doctors be able to walk into our exam room, check our fingernails, and assess if we have been compliant with taking our medications?

Time will tell, but I am pleased that so far, so few nasty signals are popping up.

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Anonymous T B said...

I have noticed brittle nails too...but didn't really attribute it to the Ibrutinib. My nails seem to get little tears in them from reaching into pocket, ect...I am almost 9 months on Ibrutinib. Hasn't been a real problem but will report it during my July appt.

June 13, 2013 at 4:21 PM  
Anonymous Anonymous said...

I have received myriad agents over the past decade, but have not been on ibrutinib. Still, I have had problems with broken nails.

June 14, 2013 at 8:55 AM  
Blogger Randy Shannon said...

Actually had brittle nails as well... Ibrutinib since last August... My wife subscribed a yogurt to help strengthen them...moderate success.


June 15, 2013 at 7:18 AM  
Anonymous Mike said...

Have any of you had your thyroid levels checked ? Low thyroid can cause brittle nails. Also calcium levels need checking. Using a good think hand cream/gel at night and during the day can help reduce split nails.

Have any tests been done on bone density as part of these trials ?

June 15, 2013 at 11:23 AM  
Blogger pkenn said...

I have had problems with my nails since my journey with CLL started - Vegetarian diet? CLL? Mine are not brittle so much as the ends pull away from the skin below and the only way to deal with the issue is also to keep them very short. My Vit. D, Calcium, and Thyroid are all good. Two dermatologists have told me that there is not solution other than short nails and trying to lessen the impact on them?????

June 15, 2013 at 10:42 PM  
Anonymous Anonymous said...

Even after being off Ibrutinib for three months, still have the nail issue. In my case, ridges in the nails lead to the little tears so check where you have a tear and see if there is a ridge. If so, one of those multi-sided nail buffering blocks like extremely fine sand paper may help. Also using nail/cuticle cream to hydrate the nail which is more fragile when dry. We are on uncharted waters here, even those of us who had to change boats.

Lynn S.

June 16, 2013 at 11:15 AM  
Blogger Unknown said...

I too have brittle nails. They were brittle and thin before, but have really worsened with Ibrutinib.

August 24, 2013 at 11:55 AM  

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