New to treatment

[Notreall]

Does anyone take Acalbrutinib and Co-Trimoxazole?

[Eucalyptus22]

Hi,

Yes I take Acalabrutinib. Started last October. Was on Co-Trimoxazole to begin with but got quite a nasty allergic reaction to it. Was covered in a severe rash head to toe, with swollen lips and tongue. They changed me to Atovaquone and thats been ok.

I have been on Acalabrutinib for 8 months and after 4 months my bloods were all in the normal range. I had been stage 3 aggressive.

I am sure you will do very well on this drug. There aren't many side effects and what there is seem to be well tolerated by most people.

In my case the only downside seems to be the effect it has had on producing any antibodies to the covid vaccine i.e. none! I suspect that will also apply to the flu vaccine this winter.

Having said that, I am a much healthier person than 8 months ago.

I hope you do well on this drug.

[Notreall in reply to Eucalyptus22]

Many thanks for the input , I am just about to start acalabrutinib and am trying to gather as much information as possible about that and associated drugs as i did not realise there was a need to take additional medication!

[Jillinill]

Yes, for the past month, I've been taking both acalabrutinib and Bactrim (aka Co-Trimoxazole, Trimethoprim / Sulfamethoxazole, Brands: Bactrim DS, Sulfatrim, Bactrim). I'm taking a 400/80mg prophylactic dose, 3 days per week MWF. It's not at full dose for treatment of infections, but it's a good prophylactic dose to prevent pneumonia, a potential side effect of treatment. I had some ground glass spots in my lungs which disappeared with full dose Bactrim. It also seems to also prevent my previously pesky UTIs, which used to required full dose Bactrim and Keflex.

As an azole antibacterial, it can increase gut uptake of acalabrutinib by slight inhibition of enzyme CYP3A4. If taken simultaneously with acalabrutinib or ibrutinib it can cause increased GI or other side effects. I always take Bactrim along with prophylactic acyclovir to prevent shingles. Both can impact CYP3A4, so I take them at least 4 hours after acalabrutinib to prevent bowel issues that I had experienced for over a year when taking it simultaneously with my previous treatment ibrutinib.

I don't seem to have any side effects from these prophylactics, and happy that they keep my safe from infections, especially as I'm neutropenic with only 0.2 neutrophils right now. Hope the combo works as well for you as it has for me.

[Zeus52]

Yes I’ve been on that combination for 2 months now with excellent results and very little by way of side effects. I did take the advice to drink between 2 and 3 litres of water a day. Had telephone consultation on Monday and WBC down to 6.9 from 147, haemaglobin back up to 119 and neutrophils of 3.0. I was amazed how fast my swollen lymph nodes disappeared- good luck with your treatment Notreall !

[devonrr]

Hi

Co-Trimoxazole is used to help people from developing pneumonia when bloods/immunity is low. I developed a rash after a few days. However, this was stopped and I then used a nebuliser, at home, once a month with pentamidine.

[SERVrider]

Yes, I was on the compassionate early access scheme with Acalabrutinib and Co- Trimoxazole. Now Acalabrutinib is licensed in the UK it comes in proper "Calquence" boxes and blister packs. I have had no reaction that I can put down to the Co-Trimoxazole.

[greenfliss]

I've been taking Acalabrutinib for 4 months (compassionate use), together with Co-Trimoxazole and Aciclovir and was a bit surprised I had to take all 3 (was also on Allopurinol for the first month). As SERVrider says it now comes as Calquence in helpful blister packs with pix of a sun and a moon so you can monitor whether you've remembered to take them morning and evening! You will need to be quite organised about the regime as Co-Trimoxazole is only 3 per week, Acal is 2 per day and Acicolvir is 3 per day!

[lankisterguy Volunteer]

Hi Notreall,-

The other drugs are added as prophylactics (a medicine or course of action used to prevent disease) to compensate for your weakened immune system.

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We CLL patients are more likely to get Shingles - so Acyclovir ( Valtrex/Valacyclovir, Famivir, etc.) is used to reduce that risk.

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During clinical trials the research showed that some targeted drugs or just the increased CLL activity increased the risk of a fungal pneumonia called pneumocystis uptodate.com/contents/treat....

The Bactrim / Co-Trimoxazole or Atovaquone can lower the risk of both fungal and bacterial pneumonias.

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Len

[PaulaS Volunteer]

I took Co-Trimoxazole along with Ibrutinib (similar to Acalabrutinib).

Like Eucalyptus22 the Co-Trimoxazole gave me nasty rashes so I had to stop it (the Co-Tri not the Ibrutinib). I wasn't given an alternative antibiotic. I seem to be OK without the Co-Tri, but I do have good neutrophil levels, unlike some folk.

We're all different and people react differently to drugs.

Wishing you all the best as you start your treatment.

Paula

[Graham64]

Hi. I started on that combination 3 year ago, but was allergic to co-trimoxazole - got an all over body rash. That got changed to Azithromycin, and no problems since than.