Change from Ibrutinib to Acalabrutinib

[shellsb]

Long post alert!

My husband, a UK NHS patient, was on ibrutinib for five years, managing side effects like high blood pressure and occasional atrial fibrillation, but apart from these he was tolerating it well and bloods have been consistently good.

My husband has just turned 50 and was enjoying going to the gym and focussed on his fitness last year.

We attended a recent CLL conference and we took the opportunity to speak to the panel experts about my husband and his side effects, who were surprised he hadn’t switched to a newer BTK inhibitor and said they no longer prescribe ibrutinib. Additionally they showed a slide as part of the presentation which showed the ‘off target hits’ between the three BTK’s and ibrutinib had the highest number. This all made us a bit nervous.

Our consultant had been comfortable continuing ibrutinib, regardless of the occasional Afib and high blood pressure, but after we discussed the conference with him and the list of off target hits (and my husband had recently experienced another atrial fibrillation episode), our consultant gave us the opportunity to switch to Acalabrutinib. He didn’t really advise us what to do, but left it to us. We were really nervous about the change but went ahead. I asked our consultant if he could switch back, if he didn’t tolerate the Acalabrutinib, and he said he could.

This was in early December. Since then, he’s had a consistently high heart rate that spikes with movement, causing breathlessness, along with a constant but tolerable headache.

Upon reporting these side effects, our consultant has stated that returning to ibrutinib via the NHS isn’t possible, contradicting his earlier assurance. He said sorry as he thought you could, but it appears it is more problematic. He said he would discuss with the pharmacist. In the meantime, he halved the acalabrutinib dose, but the symptoms have persisted.

We have another appointment on Wednesday next week. My husband took the opportunity to get his bloods done on Friday so we have the results ready for the appointment. The blood tests show elevated neutrophils, urea serum and the red blood cell distribution percentage is elevated so there are things happening since this change.

We’re obviously regretting the change and beating ourselves up for instigating this. We feel very uncertain about our next steps and a bit helpless to be honest. My husband from feeling really fit last year, feels really low and depressed and that he has gone backwards. At the moment he would take the occasional Afib and high blood pressure over this 😔

[BigfootT]

Shellsb, I'm not an expert and though I can't find the video reference currently I did see a webinar recently where Dr. Weirda from MD Anderson answered the question of "if a patient is doing well on Ibrutinib would you switch to a 2nd generation BTKi"? His answer was "No", but you, perhaps better than any of us, now know why he answered that way. I think it's the old "if it ain't broke don't fix it".

Regarding your questions about mitigating side effects of Acalabrutinib the below video (which is great if you have the time to watch it completely) has an answer starting at time 1:02. Dr. Kerry Roger's speaks to it directly and to summarize her comments....Caffeine, pain relievers and time (3-4 months) should get your husband to resolution.

youtu.be/Gv4b0_8S4ao?si=iJ4...(Not working as expected?)

I hope this helps, Bigfoot

[shellsb in reply to BigfootT]

Thank you BigfootT - that is extremely helpful!

[BigfootT in reply to shellsb]

At 42 mins in this video Dr. Koffman asks Dr. Jain (who works with Dr. Weirda) the Ibrutinib switch question. His answer is a bit more in the "it depends" category.

youtu.be/DAqUmcqwXsw?si=h12...(Not working as expected?)