Increased Hair loss upon starting Calquence and Gazyva Infusions

[Challis12]

I started treatment for my relapsed CLL about 8 weeks ago. 2 doses of Calquence daily and 4 weekly infusions of Gazyva, The infusions are now going to be 6 more done on a monthly basis. I have noticed lots of hair loss that seems to be getting worse. I have read this shouldn’t be a side effect. Was wondering if anyone else has experienced this.

Also, my sleep has been more challenged than normal. Wondering if this has been a problem for anyone? I have tried some holistic approaches with no luck.

Thanks for any input or advise!

[lankisterguy Volunteer]

Hi Challis12,

Many of us have reported brittle / thinning hair or loss, and striations on fingernails with the BTK inhibitors (ibrutinib/Imbruvica; acalabrutinib/Calquence; zanubrutinib/Brukinsa), if you look for the box on this page labeled "Related Posts" you can read this one:

healthunlocked.com/cllsuppo...

>

See this list of 150 postings for "hair loss":

healthunlocked.com/cllsuppo...

And a search on "hair thinning" will show 76 previous discussions here:

healthunlocked.com/cllsuppo...

>

Len

[Challis12 in reply to lankisterguy]

Thanks for directing me to previous conversations about hair loss. At least I’m not alone in experiencing this. It is frustrating to be told this isn’t a side effect when in effect it seems like many have suffered from this reaction to the drug. Going to try some of the options listed to see if any are helpful for me. I miss my long thick hair, but grateful my CLL seems to be responding in a positive way.

[mrsjsmith]

I certainly noticed hair loss initially on Ibrutinib so it might be worth trying different shampoos and conditioners. Personally I found Aveda very effective.

Good luck

[cajunjeff]

I have noticed my hair thinning and changing texture while on Calquence. I am fairly certain it is the calquence.

The FDA requires each manufacturer to put in the package insert of any drug all reported side effects and adverse reactions. Surprisingly when I read the insert, I didnt see hair loss as a side effect. I could have just not seen the whole insert, but I did find in my research a listing of many calquence side effects. I was surprised to see this list reference hair loss, but specifically said calquence does not cause hair loss. Its odd to me to see an insert list things the drug does not cause. That could be a thousand things, why single out “hair loss”.

Here it is:

bccancer.bc.ca/drug-databas...

[Challis12 in reply to cajunjeff]

I agree! Very unusual……… the inserts that generally accompany my meditations only list the side effects that can occur not ones that are not an issue…….very interesting finding. All I know is I am losing hair and it started when I began treatment. While I would never forgo treatment regarding a cosmetic issue it would certainly help me to understand why this is happening. I am so grateful for the medication, I just want to know what to expect!

[LynnB1947]

I suspect that Albert Einstein invented ibrutinib. I was on IBR for 9 years and my hair began to kink & grow ever which way. I have now been on a 20 month drug holiday & my hair is beginning to return to normal although it's still pretty thin.

BTKi Hairstyle (Albert Einstein)

[Challis12 in reply to LynnB1947]

I like your humor, think I needed a laugh! I always wondered why Albert Einstein had such wild hair. Glad yours is calming down!!😊

[Reetywell71]

Hi! 2months after diagnosis this past June and started on Brukinsa due to an enlarged lymph node my hair started falling out. The medication was not supposed to do this! Started back on a scalp serum I had been using for my thinning hair. It helped. I might have been experiencing shock fall out?? I was so upset. You may want to consult your dermatologist for anything helpful. Talk about adding insult to injury 😘

[Zigster49]

I am sure Calquence was the culprit in my hair thinning. It lasted for months, but has since all grown back. I have seen enough postings on this side effect to think it should be listed by the manufacturer.

[Challis12 in reply to Zigster49]

Hi, Were you on Calquence when your hair finally started to grow back?

[Bobby9toes]

I belong to an online Calquence support group and have read this is a problem for many people. The manufacturers of Calquence monitors this site and when a new side effect is mentioned, they give a place for us to report it. I haven’t noticed any loss, but my hairdresser has noted a change in the texture. My only annoying side effect has been red splotches on my face which fade and are completely gone in a day or two. It’s a small price to pay.

[Zigster49]

Yes and I’m still on it. My hair loss began within a month or two of starting Calquence and continued for about 6 months. Within a couple of months after that, the person who cuts my hair could see new hair coming in on my scalp. I estimate I lost about 25% of the volume of my hair before the loss stopped. For me, the worst part was getting hair in my mouth and on all my clothes, so I either wrapped my head in a scarf or wore it around my shoulders.

[Challis12 in reply to Zigster49]

Oh! That gives me hope!! My hair is everywhere just as you described regarding yourself. Thank you for sharing and giving me hope my hair will improve at some point!🙏

[tesoro5858]

Hi Challis12, I had hairloss, I estimate 33%, while on obinutuzumab infusions, which was monotherapy for me (no BTKi). I was on it for 6 cycles. My hair grew back when finished with the therapy. Of note, 3 years later I just repeated another 6 cycles but have not experienced hairloss this time. I hope my experience helps.

[Challis12 in reply to tesoro5858]

Hi Tesoro5858, I just had my 5th Gazyva infusion. What I found interesting when I inquired about hair loss with my care team they replied neither Calquence nor the infusions cause hair loss, BUT will cause hair thinning. Looking up the definition of hair loss vrs. thinning there is a difference. Clumps of hair vrs. Strands. Interesting, pulling fist fulls of hair out of my brush, finding hair all over the floor etc., etc. sure feels like hair loss!

However, I take heart in your experience with the eventual regrowth of my hair when done. They did suggest taking 2500 mg of biotin. Thank you for your response!🙏

[tesoro5858 in reply to Challis12]

I just looked up the differences in hair loss vs hair thinning. Thank you bringing it up. I agree that hair in your hands, brush, or shower drain is loss, not thinning of individual hair strands due to follicle changes.

[Jacksc06]

Hi. I had hair thinning after my first round of B+R Infusions in 2017. I take a Biotin tablet daily. My hair has returned to its former thickness. Best wishes.