Hi talking recently to fellow CLL person they mentioned that it was possible to be on low dose antibiotics for a long time without becoming resistant. I'd like to give my consultant more info about this.
Also wondering what are the new kids on the drug block for after Ibrutinib or combinations?
After Imbruvica (ibrutinib), ...largely depends on your location... perhaps Zydelig (idelalisib)/rituxan or Venetoclax perhaps the new duvelisib, or a clinical trial. Venetoclax and rituxan in the U.S. and UK.
~chris 🇨🇦
Hi I take a small 50mg Nitrofurantoin antibiotic every day. This is because even ivig couldnt stop repeated urinary tract infections. Im having this reviewed in a few weeks. It stopped the infections. I had fcr 8years ago and havent started treatment yet but my immunity was very low. Anne
Some patients with CLL, especially during Ibrutinib (Imbruvica) or Idelalisib (Zydelig) have gotten Pneumocystis - a lung fungus common to immune compromised folks with HIV, MS etc.
en.wikipedia.org/wiki/Pneum...
webmd.com/hiv-aids/guide/ai...
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Even though it is a fungus the common prophylactics are two different antibiotics: Bactrim ( TMP-SMZ ) webmd.com/drugs/2/drug-6400...
or
Atovaquone webmd.com/drugs/2/drug-6077...
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Dr. Furman had me on them for 2 years but then tested my CD-4 levels and halted the prophylactic antibiotics.
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Len
Thanks for the info re lung infections whilst on Ibrutinib. I have been on Ibrut for 3 1/2 years but from last Winter I was getting numerous lung infections and the antibiotics cleared them but immediately the course finished the infections would come back despite being on monthly IVIG infusions. I am hoping that continuous low level antibiotics might be preventative.
I’ve been on Imbruvica nearly three years and have been taking 200 mg aciclovar (?) virtually since the start. My Oncologist advises it is a precaution for infection, ie URI.
Hi RJR1,
Acyclovir, Valaciclovir and Famciclovir are anti-virals that many CLL patients take for long periods as prophylactics for Shingles and some other viruses.
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I believe that UTI is usually a bacterial infection so either IVIG infusions or prophylactic anti biotics would be needed for anyone that has frequent UTIs. I believe that is the question that splashsplash was asking about.
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Len
No Ivig required... I may have mis understood but she’s got me on it... I’ve had shingles even though was immunized
Hi Splashsplash,
It's not that people get resistant to antibiotics. It's that groups of bacteria evolve that are resistant to the antibiotics.
scientificamerican.com/arti...
Since my spleen ruptured over 3 years ago and was removed, I have been on low doses of antibiotics every day. This is standard protocol for people without spleens and sadly will have to continue for the rest of my life.
My worry is not that I will get resistant to the Penicillin that I'm on, but that more bacteria will evolve that will be resistant to Penicillin and other antibiotics.
There was a good program on the BBC a few days ago, showing the dangers of bacteria becoming immune to more and more of our present antibiotics. This is partly due to worldwide overuse of antibiotics. youtube.com/watch?v=qj_mQHI...
A lot more research needs to be done, to develop new antibiotics for the new strains of bacteria around. This has been known for a long time, but the message is slow to get through.
With CLL patients there's a balance to be found, re not over-using antibiotics, but having them readily available when we really need them.
Best wishes,
Paula
I saw that programme and another where experiments to decide if anti bac handwashes were better than soap and water. Soap was better because if I understood it correctly the handwash encouraged mutations of the bacteria. Im going back to soap. Anne
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