Hello, I'm new and happy to have come across Health Unlocked.

[Drago1941]

I was diagnosed with CLL in 2011 and after a relapse my hematologist started me late May on Acalabrutinib (Calquence). Initially I had issues with oral blood blisters, but things have settled down. No other side effects. I'm interested to see how others are going on this medication?

[sllincolorado]

I had a very good two years on acalabrutinib. Occasional mouth sores but used hydrogen peroxide with water as a daily rinse to keep them under control. No other side effects. Was able to be very active hiking and worked full time without issue. Hope this continues to be an effective med for you for a very long time.

[Drago1941 in reply to sllincolorado]

Your comment about using hydrogen peroxide is very interesting. I'm going to give it a try. Thank you.

[maggiesgrandmom]

Welcome!

[Jacksc06]

Hi Drago1941. Welcome to the family.

[studebaker]

Welcome Drago.

I am on Acalabrutinib for 6 months now. Headaches were bad at the beginning and always started at the same time every day. They are gone now and except occasional joint pains in my fingers and bruising, no other problems so far.

Dana

[Drago1941 in reply to studebaker]

Your headaches are gone, but for anyone else who may be experiencing them, I found that early morning coffee is helpful in lessening them. This is one observation by one of the CLL specialists - forgot the website. Anyway, I found it helpful. I did try Tylynol Extra strength, but did not really help.

I do find that I also bruise easily. I'm not sure if it is related to the blood thinner (Eliquis) I'm taking or Acalabrutinib?

[Sojomama13]

Hi,

Intake Acalabrutinib as part of a 3 drug phase 2 trial and am doing quite well. I wish you all the best.

Sandy

[Drago1941 in reply to Sojomama13]

Thank you!

[Seok]

Hi Drago

Started treatment with Imbruvica (IB, Ibrutinib) in August 2017, had to stop in June 2019 due to knee pain, high bp and reflux. After 8 months of stopping IB my Hb started to decrease slowly and flu took 2 months to get well.

With Covid around us, Dr thought it’s a good idea to go on Calquance by end March, side effects are slight bruises with petechiae, no headaches. Not sure if my right shoulder pain and right arm weakness (symptoms of rotator cuff injury) and right fingers numbness upon waking up were caused by Calquance. I’m interested to find out if anyone here has similar experience. Currently going through physical therapy to address these issues.

Seok

[Drago1941 in reply to Seok]

I also have some right shoulder discomfort. It's not serious enough for me to give it any attention. I've had issues with this over the years and am presuming that maybe Calquence exacerbates it. Hope your physiotherapy is helpful!

[cllady01 Former Volunteer]

Drago, Welcome. I understand your first treatment was Obinutuzumab + Chlorambucil.

Thank you for giving that information on your profile page when you registered. That page is most helpful for referencing as we each try to help one another.

I hope you will find time to continue to update your Profile Page, adding the new treatment in the narrative you have begun.

Those who have not had the previous treatment you have had, may have some differences in their reactions to Calquence (Acalabrutinib) and that is something we can all learn about.

It is good to know you are happy and doing well.

[country76]

So far Alcalabrutinib is amazing. I was on Ibrutinib for 14 months and had every side effect under the sun, some were crippling.

I still have some high blood pressure however not so high and controlled by meds. Heart palpatations almost completely gone. Some minor bruising. The day I started Alacabrutinib my body cramps and knee pain disappeared. Some of my cramps were so bad they left a bruise. That alone was worth the switch. I had a slight headache the first couple of pills not enough to even take a tylenol or mention. Less skin issues. Hair growing back. My feet were sensitive however I didn't link it to Ibrutinib until some others mentioned it, that's gone. My fingernails still splitting, not as bad, however the skin around the nail isn't. Ocular migraines are gone. No mouth sores, 2 brazil nuts a day kept under control.

That is about all I can think of at the moment. I am only in the third month so I hope it continues to be great.

[Drago1941 in reply to country76]

Good and encouraging news to me. And yes, hope the treatment continues to be great!

[NaturalWaze in reply to country76]

Hi Country - By “hair growing back,” did you lose your hair on ibrutinib? I will soon be discussing treatment options with my doc and haven’t heard of hair loss with BTK inhibitors.

Be well and glad to hear acalabrutinib has eased your side effects!

NW

[country76 in reply to NaturalWaze]

I didn't have hair loss. It broke off. Not completely all over, just changed my hairstyle. lol I take thyroid meds which stopped working and caused hair thinning. I had a combo of breaking and thinning.

The breaking was mainly just around my face. It is growing back thicker and kinky. I was taking biotin, however my endocrinologist wanted me to stop taking all supplements.

[NaturalWaze in reply to country76]

Thx for the explanation! Losing my hair in addition to other side effects is not something I was prepared for!

[country76 in reply to NaturalWaze]

Me either. I asked my doctor before starting Ibutinib if I would loose my hair and he said something to the fact he didn't think I would.

So far with Alacabrutinib my hair is not breaking. It is growing back. I think alacabrutinib stays on target instead of wandering around my body playing havoc with my other systems. I hardly have any side effects so far.

It will be interesting to see if my thyroid meds start working as they should. I have another test coming up next week.

[Belkin123 in reply to country76]

Thanks for sharing

[JKR1]

Hi Drago! I started acal a month ago. I thought I’d add this in case anyone reads it and suffers from headaches. My main side effect has been headaches that also started at the same time every day, but it was in the very early morning. My consultant had suggested coffee as a remedy but I didn’t feel like it at 2 am! I tried paracetamol plus, which includes caffeine but this kept me awake. After some experimenting I started drinking a coffee just before bed, was able to get to sleep and the headaches stayed away until morning. It was like magic!

Take care. 😊

[Drago1941 in reply to JKR1]

Thanks for your confirmation that coffee is a remedy for headaches caused by acalabrutinib! Indeed, it is like magic!

[Belkin123 in reply to JKR1]

Thanks for sharing

[Eveineltham]

Welcome Drago x

[SOLLYTHEGOLLY]

Started acalabrutinib (Calquence) a couple of days ago and have now developed a small crop of oral blood blisters. They don’t cause me any problems though.

[Drago1941 in reply to SOLLYTHEGOLLY]

Hi!

I had the same problem at the start of taking Acalabrutinib, but now after about 3 months it is no longer an issue. This appears to be a rare side effect. At the beginning, I had at time as many as 4 or 5, then gradually the numbers dwindled. Here is my log for the last month or so. BB is acronym for blood blister.

August 9 – BB still present back of right cheek … sore, no pain associated with bb. Gone by the end of the day.

August 12 – BB under lip – 1/8”

August 17 – BB right cheek – 1/8”

August 31 – Sept 1 – BB right cheek – 1/8” same are as Aug 17 BB. Gone Sept 2.

Sept 8 – BB lip inside right. Gone on Sept 9 examination.

My hematologist initially reduced the dosage of Acalabrutinib for a month or so from two to one a day, but it did not help as I still got blood blisters. He came to the conclusion that as long as it is not life threatening that the benefits to be gained from Acalabrutinib out way this rather minor side effect. His advice was to simply ride it out! Stay the course as somehow the body seems to eventually make an adjustment.

[SOLLYTHEGOLLY in reply to Drago1941]

Just had a routine telephone consultation with my haematologist. She appears unconcerned. And if she is unconcerned, then so am I. They’re just mildly inconvenient. But thanks for the info Drago. Glad to hear that they go with time.

[Drago1941 in reply to SOLLYTHEGOLLY]

Comforting to read that your hematologist has no concerns. Are you on any blood thinner medication? I'm on eliquis, and it may be a contributing factor to the blood blisters.

[SOLLYTHEGOLLY in reply to Drago1941]

No. Not on any blood thinners. Guess it’s just the luck of the draw. If blood blisters are the only side effect that I get, then I’ll take it.

[Drago1941]

Yes, totally agree! There are some very serious and scary side effects. Blood blisters is so minor.