Starting to take acalabrutinib

[Takingchances]

My husband has relapsed after 9 years in remission ,his doctor is talking about starting him on acalabrutinib ,but he is worried about the side effects he has been reading about ,can anyone relate to their experience on this drug please

[Stuff427]

I have been taking Calquence for close to 4years with no issues. I have read about headaches and some digestive issues. I had no headaches but some light digestive issues during the first week. After that no issues.

Mike

[Takingchances in reply to Stuff427]

Thank you so much Mike for taking the time to reply much appreciated Jan

[Tosha66]

Hello,

I started taking Acalabrutinib in August last year and like your husband was very worried when I read about all of the side effects.

The good people on this site calmed my worries and they were right. 😊. I had very mild headaches for the first week or so in the mornings which were easily resolved with a couple of coffees. I also took it easy the first couple of weeks but I was being quite cautious. I bruise fairly easily but I think that is just a symptom of this condition and also occasionally get petechia (little red spots) but that is a minor problem .

The medication has worked really well for me. I feel great and now take the tablets in my stride.

I hope it works equally well for your husband.

Very best wishes

Tosha

[Takingchances in reply to Tosha66]

Thank you so much for your reply, I really do appreciate it is good to know you feel well on this drug best wishes jan

[Sushibruno]

hi, I’ve been on acalabrutinib for over a year. I experienced headaches in the beginning coffee or Tylenol took care of that. A few weeks later that went away. Today I have no side at all.

[Takingchances in reply to Sushibruno]

Thank you so much for your reply, it really helps to know the drug helps you xxx

[Sushibruno in reply to Takingchances]

👍🤗

[Fowey2009]

My husband started acalabrutinib in February and has had no side effects at all.

Best wishes

Beryl

[Artlover1908]

I've had no I'll effects, not even headaches, taking the tablets is just routine now. My blood work has improved dramatically and my consultant is very pleased with my latest results. I feel 'back to normal' and I'm hoping that it can continue, as my consultant said originally she thought it'd work for at least 4 years.

[Takingchances in reply to Artlover1908]

Thank you so much for your reply it is so reassuring to know your consultant is so pleased with your progress ,it has helped us a lot ,best wishes Jan

[GettinThruIt in reply to Takingchances]

How does one get into remission in the first place ? I thought CLL required lifetime therapy ?

[Takingchances in reply to GettinThruIt]

My husband had 6 months of chemotherapy, in 2011 he had a " complete response " which lasted until 2020 gradually the leukaemia has progressed again,now its time for more treatment

[Skyshark in reply to GettinThruIt]

GettinThruIt

Covalent BTKi results in very few patients (2%) that reach complete remission (CR). Because they only suppress the CLL it is a continuous maintenance therapy. Many claim to be in remission on BTKi but this is just normal blood numbers, the acid test is if they have to stop. It seems to be evens chance of needing to get back on the cBTKi ASAP or a drug free remission with a median of 2 years.

The addition of Obinutuzumab to Acalabrutinib increases the number reaching CR by a factor of ten.

All short duration treatments (V+O, V+I, FCR, BR) offer a drug free remission period that can last years before treatment is needed again. Rates of complete remission on V+O and V+I are high ~60%. FCR is 6x 4 week cycles and about 50-55% have very durable remissions greater than 10 years. Unfortunately no one can predict which of the ~5% of CLLers that are suitable (mutated IgHV, no TP53 aberrations, no complex karyotype, under 65 and "fit") for this treatment will have that long remission and ongoing side effects are difficult to manage.

[GettinThruIt in reply to Skyshark]

It sounds like you’re saying just a BTKi won’t get remission but adding Obinutumuzab to the BTKi will achieve remission in some cases.

? Thanks

[Muddywater]

Just over a year on Acala and apart from some little blood blisters on my inner gums (which disappeared never to return after a few days) it’s been plain sailing with no other issues. Swollen nodes reduced within a very short time and the fatigue that I had pretreatment soon became a thing of the past. If I had a top tip it would be to drink plenty of water during the day. Of course we are all different and the range of side effects can vary for each of us. Good luck.

[Takingchances in reply to Muddywater]

Thank-you so much for your very informative reply, my husband suffers from fatigue so we hope the drug will help that best wishes jan

[Nucleusman]

list of side effects pretty fearsome but they are there to protect drug maker. Have been on drug more than a year and now in remission!! Side effects just unsightly bruising with small lumps but small price to pay for success. Also stay out of the sun and use a 50 blocker as susceptible to skin cancer keep an eye on body for unusual formations - I had 2 removed but not cancerous

[Takingchances in reply to Nucleusman]

I just love this group you are all so very helpful, thank you for all that info ,glad you are in remission, good luck to you too best wishes Jan

[Teemed]

2 years in and I feel great. All blood ranges are normal. I had a few headaches but a cup of coffee solves it and that stopped happening after a few weeks. Some muscle cramps early on but the habit of drinking plenty water solved that. I probably bruise easier buts it’s of no concern, minor

[Takingchances in reply to Teemed]

Thank you so much ,it gives us so much hope

[Tucano]

Hello! I have been taking acalabrutinib for over a year. When I first started I had a headache for about 4 days. It was alleviated when I had a half a cup of coffee. After 4 days no more issues.

[Takingchances in reply to Tucano]

Thank you so much for your reply, it s really helpful regards Janet

[uihwki]

I've been on Acalabrutinib for 6 years. I experienced headaches at the beginning but those disappeared after a few weeks ( with the help of Excedrin Tension Headache). I've had not other side effects.

[Takingchances in reply to uihwki]

Thank you so much for your reply, it gives us so much hope

[BallyB]

Headaches in the first couple of weeks are common, but a cup of coffee makes them go away in an instant. After that, I experienced zero side effects.

[Eucalyptus22]

I have been on Acalabrutinib for 3.5 years with little or no side effects. Within a few months my blood was stable and I felt great. If you do get a slight headache in the beginning, treat yourself to a very nice cup of coffee. It seems to work well but I have no idea why.

[Takingchances in reply to Eucalyptus22]

Thank you so much for your very positive reply, its much appreciated