CLL & CALQUENCE

[Puti]

I am 70 in UK. CLL confirmed 2017. Now advised to start Calquence. Does anyone know about taking this drug please?

[AussieNeil Partner Administrator]

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Neil

[cajunjeff]

Calquence is the trade name for acalabrutinib. Acalabrutinib is a btk inhibitor like ibrutinib, but thought to have less side effects.

Here is a post I did that tries to explain how btk inhibitors work. I am on ibrutinib and consider it a miracle drug. Good luck.

healthunlocked.com/cllsuppo...

[country76]

I started taking it 3 weeks ago. Very slight headache at first and now I am fine. I haven't noticed any side effects yet accept bruising.

[Canuck901]

it’s a good drug with lower side effects than ibruntnib

Are they any trials you can get on ? More specifically the Ace 311 trial it’s a combination of Calquence and Venetoclax and has had tremendous success in treating CLL

Ydarney and Aussieniel and a few others are on this Trial

[Yidarmy69]

Hi I’m in U.K. been on Acalabrutinib since October also on venetaclax as part of a trial I have had no side effects I am now in remission hope it has the same effect on you as it has on me

[CADreamer in reply to Yidarmy69]

I will soon be starting treatment with Acalabrutinib solo. I would like to know more about the trial you are on. Is it available in US? What is the name of trial and I will research. Is it still open? You stated you are now in remission only after 8 months on trial? Are you still taking Acalabrutinib and/or Venetoclax? Normally Venetoclax takes minimum 1 yr before remission and that’s with Gazyva.

[SERVrider in reply to CADreamer]

I think you'll find the clinical trials in the USA were completed late last year and the FDA licensed acalabrutinib in December 2019. According to Wikipedia, the wholesale price of acalabrutinib is $14,067 per month and as you have to pay for medicine in the US, unless your health insurance (if you have it) will fund it, you are on your own and there are probably few who could stump up $170,000 a year, every year, out of their own pockets. Acalabrutinib has not yet been licensed in the UK and there is a trial coming to its end but there is a "compassionate access" scheme running where it can be prescribed.

[Yidarmy69 in reply to CADreamer]

Morning my trialIs Ace-CL-311yes I’m still on the combination I am waiting for aCTscan and a BMB just to confirm my consultants diagnosis I hope this helps you and you can get venetaclax to go with Acalabrutinib

[Sojomama13]

Hi,

I am on Acalabrutinib as part of a 3 drug trial. I was advised to drink a minimum of 3 liters of water per day. I have not had any side effects from it and had positive results fairly quickly.

Best,

Sandy

[tryandtry]

GREAT "dummy" summary by CajunJeff to help us understand how it works, but here's an even "dumber" version:

I got Afib after 18+ months on Imbrutinib. It led to many complications, and a TMVR to repair my mitral valve. I switched to Acalabrutinib (Calquence) just over 2 years ago. Much milder side effects than Imb. (VERY mild diarrhea, & a few small pink spots, but no pain). Initially, it quickly lowered my WBC from 250+ to about 50k. Since then (2 years), my WBC has stayed fairly steady at 50k-80k, with ALC 45-75, despite various infections/hospitalizations. I feel good (tired after infection), & would highly recommend this drug, as long as your doc agrees.

CajunJeff alluded to its now major "problem". New combos of drugs offer the hope of long-term or permanent remission, while Calq. & Imb. must be taken daily, probably forever. But, until these combos are proven, Calquence is a good choice that has given me stable results.

Good luck.

Gary

[SERVrider]

Firstly, you're very lucky to be prescribed acalabrutinib; it is restricted to patients on a supported discounted scheme from AstraZeneca because of its high market cost of over £12,000 per month. For treatment-naive patients it is normally used as a monotherapy although the FDA (the licensing authority in the USA) did trials that found combination therapy with acalabrutinib and obinutuzumab was very slightly more effective. It is a "second generation" BTK inhibitor and more targeted than Ibrutinib, hence the reduction in side effects. One advantage at present is that you don't have to go into hospital for two consecutive days , then on the 8th day and then on the 15th day as you would with Obinutuzumab. I am collecting my first month's supply of it on Wednesday and can't wait to get started.

[nonskid]

I was diagnosed with CLL in 2014 (watched to 2018); WBC increased to ~50 on entering hospital with sinusitis 2018; spikced to ~110 -> given Rituxan+Bendeka cocktail; WBC dropped to ~20, but HGB and PTL went very low. Entered new Watch period. 2019: slow increase to sharp upturn to over 110 in Dec ->three transfusion to raise RBC, Hgb, and Ptl, thereafter started on FDA approved Calquence+Gazyva protocol starting with just Calquence pill twice daily for first month with intention to add Gazyva infusion, given acceptable side effects from Calquence. With advent of Covid-19, agreed with oncologist to postpone Gazyva infusion (initial infusion of this more aggressive drug requires two 8+ hr treatments in hospital infusion clinic) to reduce contagion risk. Four months of Calquence: No side effects save fatique and initial reflux pain from increased uric acid levels associated with increased dead cell-fragments in the blood (allopurinol prescribed but did not help - instead I effectively countered with frequent hydration with alkaline water (Icelandic 8.4 pH). Numbers 4/2020: WBC 14 Hgb 13 Ptl 110 fatigue diminishing; weight increasing. Agreed with oncologist to continue with Calquence pill for 6 months with 2 month checkups. Private footnote: I was counseled to stop taking my A, B-complex, C(1g), D3, K2, CoQ10, Zinc supplements as the FDA has yet to qualify its approval with respect to drug interactions - I chose to continue and suffered no apparent ill effects, and am persuaded that my immune system was strengthened without any apparent negative interaction with Calquence.