Hi all
I haven’t posted for a long time! Recently I was unwell and had to go to A & E. It was picked up there that I had a plural effusion in my right lung and I was asymptomatic as my breathing was fine.
However it was moderate. My oncologist looked at the scan, sent me for a repeated x ray and I’ve had to pause my Dasatinib treatment for a month now. When this resolves the plan is to try me back on a much lower dosage, I was on 70 mg trying to reduce very slowly over the last few years from 100mg as my Bcr Able counts are very sensitive to change. The plan is to try me at 20 mg to see if that can hold the counts.
If not I can change to another drug. I was originally on Imatinib when first diagnosed (2003).
Has anyone else had an effusion on dasatinib after such a long time (over 10 years) of being on it?
I’m hoping I don’t have to switch drug and the 20mg will hold my counts.
I’m very lucky to have had the same oncologist since my diagnosis and I feel confident in her care plan.
Feels very strange not taking my medication daily!
You are here
Dasatinib.. Pleural Effusion after post 10 year treatment
Since you say “A&E”, are you in the UK?
If so, you ought to qualify for asciminib as you have had trouble with 2 previous TKIs.
David.
Asciminib is the newest one that’s available on the NHS, but only to patients as a 3rd line option. Lots of people have done really well on it and find it has fewer side effects than other TKIs. I’ve certainly found that to be the case, so it’s definitely worth bringing it up with your doctor.
David.
Hi, Michelle - I've had some experience with pleural effusions on dasatinib, and let me say first that this may not have occurred recently, at the 10 year mark, but rather could've been there for some time. I never had any symptoms either, and we don't get routine chest x-rays, so the effusions often go undetected. Sometimes a routine exam with a stethoscope will pick it up, but only if the doctor is listening extra low near your waist, which they don't normally do. Anyway, you are doing the best thing, which is to pause the dasatinib until (hopefully) the effusion is gone. In my experience (2 times) my PCR shows a super leap of improvement when I go back on. This is only anecdotal, but I have noticed that others have had this happen, too. At any rate, it's nervous-making, but the vast majority of pausers regain their prior PCR status.
I had effusions at 70 mg and 50 mg. I pushed hard to go to 20 mg, and even emailed Dr. Jorge Cortes who kindly wrote back and said dasatinib is different and binds tighter to the site and is more a threshold drug than a dose-dependent drug. Bottom line, 20 mg could hold the optimal line on the CML for you while at the same time minimizing the off target hit on the pleural effusion. My problem was that I couldn't stay off the dasatinib long enough for the effusions to completely clear, as my CML numbers zoomed back up to danger zone pretty quickly (about 10 weeks.) I accepted some minimal residual fluid on 20 mg dasatinib, no symptoms from the pleural effusion, and went on my way. Nobody in the medical establishment batted an eye. Recently, my primary care doctor listened hard for it and felt strongly it was finally gone. This is years! So, it is an option to just live with it. Or, you can switch drugs, also an option.
I have switched to Scemblix, but I had been happy with dasatinib. I wanted to see if I could get better looking eyes ("Gleevec eyes" - dasatinib is MUCH better than Gleevec, but not perfect) and I certainly liked what I had been reading all these years since it was an experimental drug. I have been on it since August and I just got my first PCR back, "Undetected." (At my institution the limit of detection is 0.002% IS.)
So, I hope this cheers you up a bit. Oh, and you do know that this fluid isn't IN your lung, right? It's sort of between your lung and an outer covering thing. I think somehow that's less scary!
Hello Kat
Thanks so much for sharing your experience.
I haven’t had my first bcr able result back from when I first paused treatment,they’ve repeated them once more since then, I don’t know the readings as yet.
I agree it may have been there longer than when it got picked up for a different medical reason.
The information you give is very reassuring.
Plus to find out about different drug options if 20mg doesn’t work.
Many Thanks
Michelle