It's just one case, but probably worth keeping in mind if you develop the symptoms.
"In conclusion, this case demonstrates that the risk of fungal infection associated with ibrutinib is not limited to patients with relapsed CLL, but is also present with frontline therapy. This observation warrants increased awareness among providers from all specialties and suggests consideration for a low threshold for additional imaging in patients on ibrutinib who develop fever, respiratory, and/or neurological symptoms without clear etiology."
Hi. I was diagnosed with aspergillus about 1-2months prior to getting the diagnosis of CLL. Since aspergillus diagnosis, I've been taking voriconazole twice daily.
No I can’t recall having any treatment for the aspergillus. The first time it was in my ear and was successfully vacuumed. The second time it was found in my urine. My local Dr discovered it and my Hematologist was following up on it but unfortunately he died. To be honest I can’t even remember if or how it was treated as this was 10 years ago. Now my local Dr has also died. Makes me wonder if I may still have it. My new Hematologist reminds himself that I am partial to fungus infection. Perhaps I should get tested again. How was yours found and do you feel better with the medication.
This was a much longer reply I have ever posted as it is quite lengthy.
Yes, I feel much better since on the medication. (I do remember my toe nail was very dark,, I didn't now why for several years. It is now clear in color.)
Last month, I emailed my infectious disease doctor about my concern of taking the meds for a long time. His reply was as long as I'm taking "chemo drug" Ibrutnib 140 mg daily, I need to continue taking voriconazole twice daily. I was taken off Voriconazole last year August, my Oncologist says, my labs look great. Lab results still show positive for aspergillus.
How was aspergillus discovered? From October-January, I got a chronic cough from October-January. Dr's were treating me for upper respiratory illness. Finally, I asked for a chest xray. (I felt that cough was becoming acute, I even cancelled myself from work for two weeks, returned to work for one week, took two more weeks off. I'm an independent contractor, that means no pay for total of four weeks, that how bad I felt.)
The xray results, abnormal. Was sent to infectious disease Dr, "looks like lung cancer". Well, I was in shock, I never smoked (I'm aware of second hand smoke) drank alcohol, nor coffee or used any drugs. I was distraught. I called my sister (physician at MD Anderson) she and the infectious disease doctor talked from my phone while I was in the exam room. After that I drove to work in disbelief.
Within a few days I had the CT scan (ironically two years ago, today on Easter Sunday).
CT results showed something ? cancer in my lungs. Blood work 18 tubes of blood (I will always remember that day) results showed aspergillus. It is in my lungs.
Next questions by infectious disease Dr, have I ever had a transplant or chemo? "Your immune system had to be compromised to get aspergillus." (I never had chemo or a transplant.) "Everyone in the world is exposed to aspergillus but, your immune system has to compromised to get it" per my Dr. I started Voriconazole 140mg immediately twice daily.
Next procedure: Bronchoscopy but, I coughed too much during the procedure, doctor stopped the procedure to avoid puncturing my lungs.
2nd procedure:
Needle aspiration biopsy in my auxiliary area, left side.
Results: CLL. In shock again. I'm thankful for my sister, I called her she spoke with Infectious Disease doctor Hematologist, and Oncologist which gave me a sense that I would be okay. Four months later (not the 10 years I was expecting) I started Ibrutnib 140mg. I'm also thankful to my sister because she guided me to this group. In this group, I've been inspire, learned I'm not alone and received so much hope. 🌻
I will forever thankful for this group because, I was connected to our dear friend, Chris. Chris was the only person I knew that had aspergillus and Cll.
Thanks for your reply Sher, I often read Chris’s posts and found them extremely knowledgeable and have reread a few today and have reflected on the people we have lost in this forum. As I have battled this illness for 20 years now with so many treatments and a lot less knowledge back then, realize just how far we have come in fighting this disease. Reading about Chris’s journey today I am in awe as to how much he contributed when he was so very ill.
For me it is good to talk with people who are going through a similar situation and can contribute to the effect that these treatments have on each of us. I am now back on Venetoclax 200mg and this time my bloods seem to be handling it. I hope you are still tolerating Ibrutinib and it continues to work for you.
A few years back I was very ill with PJP, (PCP)a fungus in the lungs and continue to take Bactrim to stop the recurrence of it whilst on V, and when I was on Ibrutinib. I found this group a little over a year ago and have made a few friends. Stay well and happy to keep in touch if you need another friend who has had both aspergillus and CLL. I live in Australia. Cheers,
Happy you are well and would love to stay in touch.
I often read Chris posts but, my heart gets so heavy. Amazing how much contribution Chris made to this forum and made us all feel special. He encouraged me to message him anytime and I did when I felt dispair. One thing he told me was to start swimming everyday again, as he said walked as often as he could. As soon as the swim club opens I am going to keep my promise.
My husband and I planned to travel to Australia however, not sure when we'll continue international traveling.
I’ve been receiving ibrutinib on the Flair trial for four years and this is the first I have heard of a routinely prescribed fungal prophylaxis. The only additional medication prescribed to me is co-trimoxazole, an antibiotic.
However, I recently cleared up a three-month skin problem on my hand, showing as a red area of skin with persistent small pustules, by applying an anti-fungal cream after a dose of stronger antibiotics suggested it wasn’t a bacterial infection.
I am on Ibrutinib for almost 4 years now and have developed a fungal infection on my thumb nail since April. There is a hole in the nail too. I was wondering if it’s the ibrutinib, low immunity or just a random infection. Applying the medicated nail lacquer but guess it will take time. Will speak to my Haematologist next time. Thanks
Just as I was about to start Ibrutinib I was also dealing with a fungal toe nail infection. My GP didn’t think the nail lacquer was effective so I took Terbinafine for 7 months ( toe nails are very slow to grow ) and that was the only one not contra to the Ibrutinib. Might be worth asking about.
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