Starting Acalabrutinib, advice and what to expect?

[paula_dae]

Hello All,

Happy New Year!

I haven't wrote a post in a while, because my mom has been doing really well with her numbers constantly improving. Unfortunately in the last months her lymph nodes became huge, spleen got enlarged and blood levels show the need for treatment.

The doctor prescribed her Acalabrutinib, which she will be starting probably in a week, so I wanted to hear about your experience and if you have any advice for making it easier on her. Any specific foods to avoid? Any medicines or supplements that help with the side effects? Will she need a lot of rest? Anything that you can think of will be very appreciated.

The uncertainty is very stressful, so Im trying to get as informed as possible. I am scared to not do something wrong, miss a symptom or just not be prepared.

Thank you very much!

[Shepherd777]

Some have headaches from the medication in the early days that can last a couple of weeks. Most of them say a cup of coffee or Tylenol was all they needed to get through it.

[Kwenda]

Firstly it is common to prescribe Acalabrutinib with Allopurinol for the first few weeks.

Then add Aciclovir to prevent an outbreak of shingles.

During the first few weeks a good quantity of water should be drunk daily to flush out the dead cells.

Side effects vary, but a morning headache and signs of easy bruising are common. and as previously written caffeine in coffee tea or pills cures the headaches.

After a few weeks the doctors might add Co-Trimoxazole three times a week, which is to prevent any infections particularly any lung infections. The Allopurinol is then stopped.

Note that Acalabrutinib is a slow acting drug, so don't expect 'instant' relief from all symptoms, in fact the white cell count might increase for a little as the spleen gives up the white cells it is holding.

The major foods to avoid are grapefruit, and seville oranges used in many marmalades, both of these can increase the amount of the drug in the blood stream and can cause major problems.

Otherwise the usual things of a sensible diet and as much exercise as possible.

In general the majority of patients will find that acalabrutinib works well for them

Good luck

Dick

CLL since 2005, now on Acalabrutinib.

[unairdefamille in reply to Kwenda]

I second KWENDA. I thankfully had no detectable side effects, beside bruising. It's true the improvements are slow but steady. GOOD LUCK to all of you.

[Westie11-]

Hi like all others have said, maybe a slight headache in first week and feeling or being sick. Hopefully she has been prescribed an anti sickness pill. I only needed the anti sickness pill in the morning, no problem with night time pill. A tip I got on here as helped greatly, that is I now take my morning pill during my breakfast rather than before. Also lots of bruises appear on my legs, some have been quite big but not painful. A great help for me is I have set a timer on my phone to remind me it's time to take the evening pill otherwise I would forget or be late!!

[Sharastani]

Started Acal in August. Had 6/7 morning headaches in the 1st month but easily resolved with pain killer.

Response was quick and noticed visible nodes shrank within 2/3 weeks.

No other noticeable side effects since but still early days.

[MS01]

Hi.

My experience with this (after 8 months) has been very positive.

My WBC went up the first month (as expected), and plummeted thereafter; it remained basically flat thereafter.

Except for mild diarrhea, against which I chose not to take any meds, no other side-effects. It subsided gradually over 3 months or so.

Important to keep hydrated, a bit more than usual.

No fatigue or other frequently reported side-effects.

Platelets on the low side, but only marginally so.

You will be told not to eat certain citrus fruits (grapefruit, mainly).

Good luck.

[paula_dae in reply to MS01]

Thank you!

[SERVrider]

Paula, I started on Acalabrutinib before it was licensed in the UK. The results have been staggering; the fatigue went, my neck lymph nodes went (my wife had been calling me Jabba the Hut), my spleen shrank back to normal size and scurried away back behind the bottom two ribs, my WBC, haemoglobin, neutrophils and platelets have all returned to 'normal' levels. I had minor bruising and odd blood-blisters in the mouth which came and went but otherwise no adverse effects. For me it has been totally brilliant without reservations.

[paula_dae in reply to SERVrider]

So encouraging to hear that! For how long you have been on it and how long it took for the lymph nodes to shrink?

[SERVrider]

I started in June 2020 and I suppose the lymph nodes shrank within about a month.