CLL and curly hair

I have been on Imbruvica(Ibrutinib) since 6/14. Labs have normalized dramatically in eight-nine months.

Only noticeable side effects-occasional night cramps, fingernails splitting, bruising (also taking 500mgX2 Cellcept) and my hair which has gone from poker straight to very wavy/curly in the last two months. Alarming, but puzzling. Anyone else experiencing similar "hair raising" side effects?

17 Replies

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  • Ibrutinib...Wavy Navy.... fairly well commented upon...

  • My nails break and split, and my hair is thicker and wavier too. ? Less grey? That's asking too much. Some have had thinner hair on ibrutinib.

  • How strange. I have the bone pain and some minor stomach upset. But no effect on my hair!

  • I recently in the past 8-9months developed a gastro reflux like condition. Were you diagnosed with GERD? If you were or not what are you doing about it?

    WWW

  • No GERD. Similar acid reflex condition. Tried

    Zantac and Prilosec-no help. Nexium nightly works great.

  • This just might help. There is a condition causing similar symptoms that tend to mimic acid reflux and it is called Hypochlorhydria or low acid. I was diagnosed, tentatively, by an ENT as having "silent GERD or gastro esophageal reflux disease". Because i had no pain or burning he assumed hyperacidity. I got sicker with the addition of an ulcer like pain and increased reflux on a prescribed proton pump inhibitor and antihistamine which i quit after two weeks. I researched GERD and discovered Hypochlorhydria and a folk remedy of taking a teaspoon or so of apple vinegar just before a meal. The rationale is that cider stimulates acid production which is just the opposite of what the ENT recommended. At the time I started this option I was having a dull ulcer like pain on left side that was getting worse and worse. After two weeks of the cider and quitting nuts and chocolate in my diet the pain subsided and the reflux spasm of the esophageal sphincter was gone. Today I still have minor phlegm in morning but no overt symptoms. You may not have this condition but the fix for me fit the symptoms. Another possibility is a hiatal hernia.

    WWW

  • Eh! If only... I have been on Ibrutinib since August 14. Have to agree about fingernails as I always had long beautiful nails ( not much else going for me) but they are dry tatty looking but I am using Sally Hansen miracle hardener and I think it is helping. Hair a bit thin but Other symptoms similar to yours but happy to put up with these after most of previous year in bed. Hope it makes you feel as good as it makes me.

  • Oh my goodness, yes. I had heard from only one other person who also experienced the wavy hair. I have been on Ibrutinib for almost two years, so I can tell you the curly hair is here to stay! Unfortunately the nails also continue to split, so no more long painted nails for me. I take a daily magnesium supplement and also occasionally drink about four ounces of tonic water at night for the leg cramps. It has worked for me.

    This forum is so helpful and educational. Thank you so much for your post. It is nice to know we aren't alone out here! Stay well, Villager.

  • A number of you have commented on these symptoms, relating them to ibrutinib. I'm still at watch and wait, but I have the splitting nails and wavy hair. I'm 66, and thought they were simply a symptom of aging--the hair particularly, because gray hair often goes wavy. Connection to CLL is interesting.

  • Ditto splitting nails and thick wavy hair. My hair has always been thick but was stiff before. I rather like it this way -- irritates the heck out of my bald friends!

  • my nails have been splitting awful, night cramps in legs l but my hair is already curly:) so that isn't happening - how do you like your new do? xo

  • The wavy hair is really just an added plus as far as the effectiveness of the Imbruvica.

    This was my 4th phase treatment to control the CLL, ITP and hemolytic anemia I have been dealing with since my initial diagnosis in 2009 (Prednisone, Campath, Rituxin, CellCept) For today, I am planning for my future not my funeral. And I'm letting my hair grow long and wavy. My wife loves it and all my balding friends are jealous!

  • I was JUST asking MY Hairdresser about this yesterday!!! Only in REVERSE!!! Tho' I'm Thankful to God I didn't lose my hair during chemo, my usually wavey/curley hair became FLAT as a pancake! I always had plenty of 'body', now we've got to use 'product' (gel) and 'tease' to get some stand-up on top! Mt Hairdresser's response was similar to others I've read here; 'you've been bombarded with chemicals for month and your hair has been affected just like other parts of your body...' (after all, it's just hair...it's your scalp that's been affected...it may never come back exactly as it was before)....I realized that my hair basically didn't grow during the 6 months of chemo...I didn't have to go in for a haircut....but 5 weeks AFTER CHEMO, boy! did I have a haystack of hair! I'm back going every 4-5 weeks for a cut!

    NAILS basically stayed where they were! They still haven't grown out enough to get everyone at the same length to justify a manicure...so weird, this CLL thing!

    Katier

  • My hair is so curly my barber suggested I go to harlem to get it cut.

    My toe nails and finger nails are cracking, i wear only long sleeve shirts to cover the massive # of bruises... but as of now I am in Complete Remission , so don't let the small

    stuff bother you! fish 61

  • Actually my wife says both my head hair strands are wavy....no sympathy at home..I still have to take out the garbage.fish 61

  • Hi Villager,

    I do not have enough hair to tell if it is straight or wavy but did get the splitting nails. I am finishing out on my 44th month on Ibrutinib. Curiously my nails are becoming less splitty than they were. In the beginning the nails got very soft and ripped more than split. Then they got brittle with chronic splitting and for the past 6-8 months they will occasionally split but only two or three at a time with others retaining a hardness without being brittle. Not like before Ibru but definitely better. Keeping them trimmed helps a lot.

    WWW

  • 44 months? You are an inspiration! Thank you!

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