From a report from the recent Edinburgh iWCLL 2019, "Routine empiric prophylaxis against pneumocystis jiroveci pneumonia (PJP) may be unwarranted in chronic lymphocytic leukemia patients initiating Bruton tyrosine kinase (BTK) inhibitor therapy, a retrospective chart review suggests."
Dr. Ryan, a senior resident at Brigham and Women’s Hospital reporrted that “The overall prevalence of PJP in patients not on prophylaxis was 3.4%, there were no cases of PJP in patients on prophylaxis, and the incidence rate in patients not on prophylaxis was 1.9 per 100 person-years, with a number needed to treat to prevent 1 case of PJP calculated to be 42 patients,”
Mmmm. I’m not at all sure that I buy this. The study itself says that incidence rates have been variable in other studies and it’s clear that this is not a large enough Cohort to be sure the incidence is correct. Also what’s not clear to me is just why it should be a problem to treat around 40 people to prevent one person having an invasive fungal infection!
In the absence of a clear clinical trial complete with randomisation let’s just say I would personally want to stay on prophylactic treatment if I was on ibrutinib and I continue to take it post my FCR and will do until I have a decent number of CD4 lymphocytes something most of us will be low on post any successful treatment with currently available medicines.
Note that PCP can be fatal and the SPC of ibrutinib does list PCP as a potential side effect and notes this has been fatal in some ibrutinib patients. The US SPC notes that as many as a quarter of patients had an infection that was at least a “severe adverse event” on ibrutinib (this included bacterial fungal and viral)
My understanding is that people with HIV/AIDS seem to be given prophylactic treatments more readily than us which seems strange given that some of the mechanism of our immune deficiency is similar to theirs.
My immunologist says she has seen people with blood cancers who have developed a form a lung damage called bronchiectasis from repeated pneumonia’s over years but in some csss nobody had thought to even check their IGG levels until the damage had been done.
This article for example seems to say that if your CD4 lymphocytes are less than 0.2/200 then you are susceptible and given that many of us post treatment with any medicine will have a —total— lymphocyte count of less than 1/1000 then clearly that is likely to include many of us.
Thanks for that, Adrian. I can see that for some people on Ibrutinib and other BTK inhibitors, prophylactic medications are certainly advisable. Maybe what comes out of this article is that every patient needs assessing on an individual basis, rather than everyone being treated the same.
When I started on Ibrutinib (as a second treatment) two years ago, I was NOT given any prophylactics (except allopurinol for the first few weeks, to prevent tumour lysis syndrome).
About 6 months later, as the FLAIR trial was getting going at my hospital, one of the doctors thought I should be on Septrin (Co-Trimoxazole) as a prophylactic, as all the FLAIR patients on Ibrutinib were getting it.
Soon after starting Septrin, I got nasty rashes - itchy red spots on my face and arms. The doctor reckoned I was not a high risk for PJP so should be fine without the Septrin (which can often cause skin reactions.) I stopped it and gradually the rashes faded away.
For some people, side-effects of prophylactics are quite severe and not worth the protection they might give. For those at high risk, it's different of course.
Because I don’t have a spleen, I’m already on twice daily prophylactic Penicillin. That will continue for the rest of my life. I tolerate the Penicillin very well, but it’s possible that adding Seprin to the mix was the trigger for the rashes.
I hope that doctors will look at each person individually when deciding on these things – not always easy to get the right balance between risk and reward.
Hi Adrian, I was diagnosed with bronchiectasis immediately following 5 rounds of FCR during which I suffered with a protracted chest infection . Having suffered with bronchitis in early childhood and periodically throughout my adult life whenever I contracted a cold it made me wonder how long I had actually had bronchiectasis without it being diagnosed. My consultant was of the opinion that my repeated bouts of bronchitis were probably the cause of the bronchiectasis.
I was later admitted to hospital on two occasions through having a chest infection requiring IV antibiotics and following this I was prescribed Carbocisteine capsules which help thin the mucus enabling the body's natural processes prevent it accumulating at the bottom of the lungs and going on to become infected. This seems to be working well.
In addition, since now being on Ibrutininb (as a second treatment), my haematologist has put me on a prophylactic dose of co-trimoxazole which so far seems to have prevented me developing further chest infections whenever I catch a cold.
I used to dread catching a cold with it's inevitable consequences of chest infections but now since being on the co-trimoxazole, I believe it is doing it's job and provides me with a much greater peace of mind.
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