I have been on Ibrutinib since 3rd June 2020 and was making good progress with my blood being 'normal' and the lympth nodes going down. I had a CT scan mid-October and my Consultant called me on the 23rd October and said due to concerns that Ibrutinib could be causing 'scarring' on my lungs I should stop taking Ibrutinib immediately. My consultant wants to give it 4 weeks with no Ibrutinib and then perhaps I will have another CT scan. They may then consider switching me from Ibtrutinib to Venetaclax.
Question is, has anybody found that Inbrutinib affected their lungs and, if so, what action did they take. Thanks.
Magnus
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Dym230109
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Hi, Magnus, I started on Ibrutinib April 30th 2020 and everything has been progressing nicely, however a CT scan on my neck in mid September showed a shadow on my right lung. There has not been any physical indication of a problem and I have been scheduled for a follow up scan in mid December, so fingers crossed all will be well. My care team however do not seem to be overly concered, that includes my GP who I will be talking to tomorrow, so I will see what he says then. Wishing you all the best Mike!
Magnus, I am on ibrutinib and thus far have not had lung issues. But I do know that ibrutinib can be associated with interstitial lung disease that can cause scarring.
I would want to know from my doctor, if he knows, what is causing my lungs to create scar tissue. My first thought would be a viral pneumonia. Ibrutinib does carry an increased risk of pneumonia type infections, particularly early on in is use. Over a longer period of time the risk of infection on ibrutinib decreases, supporting the theory that ibrutinib does restore our immune systems to some degree.
Interstitial lung disease is kind of a blanket term that covers all sorts of diseases that cause lung damage. Pneumonia would fall under the umbrella of interstitial lung disease. Sometimes they cannot pinpoint what is causing the lung damage, so they just use a blanket term like interstitial lung disease.
So what I would wonder is do they know what precise disease is causing the scarring, like a pneumonia that is not uncommon with ibrutinib. And is there any treatment for whatever the underlying condition is.
I might be totally wrong on this, but I dont think of it as ibrutinib directly causing lung damage, but rather that ibrutinib as an immunosuppressant drug might have made you prone to some opportunistic lung infection. And if that is true, is there any way to treat the underlying condition? And I am no expert for sure, but I would want my doctor to tell me if he knows more specifics on what is causing the scarring. Its possible its not related to ibrutinib at all, but since ibrutinib is known to put us at more risk of pneumonia, I can see why it would be suspect number one.
I do think if you have lung scarring that pausing ibrutinib makes sense.
Hey Bijon, appreciate you thinking of us. I got through fine. I lost a lot of shingles and am replacing my roof, but I needed a new roof anyway. My power was out a few days, but my house generator worked this time. I fared a lot better than some of my neighbors. There were lots of trees in houses where I live and we were 50 miles east of the storm, so I am sure people closer to the eye got hit worse.
I agree with cajunjeff except to add that a common lung issue while on several of the BTK and Pi3K inhibitors is a fungus called PCP or PJP Pneumocystis.
SNIP Pneumocystis pneumonia (PCP) is a form of pneumonia that is caused by the yeast-like fungus Pneumocystis jirovecii.[1] It is also known as PJP, for Pneumocystis jiroveci Pneumonia.[2]
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Pneumocystis specimens are commonly found in the lungs of healthy people although it is usually not a cause for disease.[3] However, they are a source of opportunistic infection and can cause lung infections in people with a weak immune system or other predisposing health conditions. PCP is seen in people with HIV/AIDS (who account for 30-40% of PCP cases), those using medications that suppress the immune system, and people with cancer, autoimmune or inflammatory conditions, and chronic lung disease.[4]
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Signs and symptoms may develop over several days or weeks[4] and may include: shortness of breath and/or difficulty breathing (of gradual onset), fever, dry/non-productive cough, weight loss, night sweats,[5] chills, and fatigue.[4] Uncommonly, the infection may progress to involve other visceral organs (such as the liver, spleen, and kidney).[5]
Cough - typically dry/non-productive because sputum becomes too viscous to be coughed up. The dry cough distinguishes PCP from typical pneumonia.[5]
Before I started Ibrutinib I had a CT F/U after a shadow on a Legionaires Disease F/U x-ray which showed some lung nodules and spots (forgot the terminology). My doctor said the other areas could be from a cold or flu in the past and fairly common.
The inside ones were benign and there is one in the lung sack which I guess would be considered interstitial however they didn't use that termonology.
A f/u a year later after being on Ibrutinib showed no growth so they said it wasn't cancer. I will be having another Ct the end of this year. I really don't like having all these CT scans.
I was wondering if the nodule was from Cll.
The best of luck. There are such great results from Venetoclax.
I took Ibrutinib (here in the UK) for two years and it suppressed my CLL very effectively. I thought it was a wonder-drug.
However I was then diagnosed with interstitial lung disease, which caused fibrosis in my lower lungs. I quickly and permanently lost 20 per cent of my lung capacity, and had to take lung rehabilitation classes to help me make the most of what healthy lung capacity remained.
I had a cough for over a year, and have ongoing issues. I am taking a steroid spray twice-daily to combat infection.
The diagnosis was of drug-induced lung disease, and I was advised at the time (after exhaustive testing) that ibrutinib had caused the issue directly, and that I had not been suffering from an opportunistic infection.
So, on clear advice from lung and CLL specialists, I stopped taking Ibrutinib immediately. And I had to come off the clinical trial that I was on at the time.
I had two further years blissfully free of CLL, without medication, until the CLL eventually returned aggressively.
I then underwent six months of FCR chemotherapy, and have been in remission for the last two years.
I wish you the very best on Venetoclax, which I think will eventually be my next port of call, subject to other medical developments in the meantime.
Do you have symptoms like shortness of breath? I was on IB for four months last year and taken off because of side effects. I am now on Acalabrutinib and have shortness of breath in addition to the fatigue.
Since starting on Ibrutinib on the 3rd June I have have two periods (for 7- 10 days) of intense fatigue and tiredness where I was very happy to lie on the sofa for most of the day. My consultant did not think the fatigue was caused by CLL or Ibrutinib. Perhaps the condition of my lungs is making me tired and fatigied?
I'm surprised they don't think the fatigue is due to CLL or IB. I had intense fatigue when I first started treatment. I'm sure it was CLL and start of Ibrutinib. I could hardly function and had no appetite, had to force myself to eat. I lost 10 # the first two weeks of treatment. My RBC and HGB are both low with the start of Acalabrutinib and side effects are not as severe, but I am on 1/2 dose to start.
Hi Bijon, I am due to start Ibrutiib next week. I have CLL and enlarged neck glands. Is sitting in the sun going to be a major problem because I am told that extra risk of skin cancer can be an issue. I am in Wirral UK.
CLL brings with it an increased risk of secondary cancers, with skin cancers most represented, due to the risk factor for them reported to increase by up to ten fold. So you would be wise to reduce your risk through the usual ways of reducing/avoiding sun exposure in the middle hours of the day, using skin block and protective clothing.
Yes It will be exactly 2 years in November that I have been in I/V trial
In July 2019 my CT scan showed platelike scarring The next CT scan in January showed mild linear scarring. I asked both my hematologist and my general practitioner and neither one were concerned. I was having some Bronchitis issues at the time. Now I am beginning to question their responses
Oh goodness I'm just on my 5th month and I can hardly breath. I'm to see a respirologist this week. I am sad to hear you had scarring. Did you have symptoms early on?
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