My husband has been in the Flair trial for the past three years. Recently he had to have a pleural effusion drained on his right lung. Today we have been told that CLL was found in the fluid and that the ibrutanib he had been on must no longer be working. The doctor is going to put him on Venetoclax. She has also prescribed steroids as he has been getting breathless.
It's been quite a blow and I'm posting this in the hope that someone may have experienced the same and it turned out to be for the better. But also to ask opinions on Venetoclax.
Thank you to all the people that replied to my earlier post while we were waiting for the procedure to be done. I find the help and care people contribute to this forum very touching and uplifting.
Many thanks again.
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Poohey
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Poohey, everything I have heard is that the next treatment for relapsed/refractory on Ibrutinib is Venetoclax, all things being equal----here is a review of the subject:
I had to stop Ibrutinib in 2015 after 1 year. I started Venetoclax last year and only got to 200mg as my bloods were good. After 5 months of 200mg I had to stop as my white cells went too low. 6 months down the track I am on no medication and my blood is good. Also no sign of lymph nodes returning. I am very happy with Venetoclax and have had a lot of treatment over the last 19 years.
Poohey,. Venteaclax is wonderful!! I had to change in December last year because my Imbruvica quit working. The 1st month is rough but afterwards it is wonderful. Good luck, Anna
I was on Ibrutinib and had a serious side effect of pneumitous which landed me in the hospital for several weeks and out of work for three months. So that ended my experience with IB. I then went through the ramp up to 400 mg of Venetoclax. After the ramp up I got Pneumonia and Sepsis which landed me in the hospital for two weeks. I too had to have 1.5 liters of fluid drained from my chest cavity which the DRs believe was caused by the CLL. Of course the medical team got to prod, poke, infuse and do another bone marrow biopsy for good measure while I was a guest. They like to "practice". Because of very low platelets and neutrophils I've had to decrease my V to 100 mg. I recently added Gazyva to the V and finally things are turning around. Thus far my experience with V&G has been relatively good. No other side affects now. So I hope all turns around for you as well.
The data for venetoclax is very good. It’s often used in combination with Rituximab or obininituzimab. If you are uncertain you can always ask to see another specialist for a second opinion but it does sound like the kind of thing many consultants would consider doing. We are fortunate that there are options for different treatments and more in development. We all are rooting for you to do well.
Hi, Poohey. I am in the UK. I had a similar experience although I have NOT been on a trial. I had bilateral pleural effusions which persisted for months when I was on Ibrutinib mono therapy. It got worse in the initial stages when the WBC went up alarmingly as is the case with Ibrutinib. I had several separate lung drainages as an out patient and even had a semi permanent drain in place for three months which was drained at home by my wife daily. I suppose I had the effusions for the best part of a year but eventually they got better. I suffered kidney damage after being on Ibrutinib for 21 months and it had to be stopped.
After a few weeks and when the CLL had returned, I was very fortunate to be allowed Venetoclax as a mono therapy which I am still on after 22 months. I have had no side effects from the word go and am enjoying a good quality of life. Venetoclax is a wonderful drug for me and I think, many others. My bloods have all been in normal range for nearly two years and my latest bone marrow biopsy showed terrific improvement. I am now 80 and feel a lot better than I did 5,4 and 3 years ago. My wife and I now have little holidays in the UK and are going on a cruise to the Canary Islands in November.
Good luck to your husband. Onwards and upwards. Best wishes
David is your bone marrow clear of CLL? If not you may want to discuss the option of combining venetoclax with your doctor as that is now done more and more ofte. (usually with Rituximab) and it might just get you to MRD negative status and then potentially some people then stop the medicines altogether and may have long remissions. Of course every case is individual and this is not advice that you do this just that you could look into the data and raise it as an option with your doctors to see if it might or might not be suitable for you.
Thanks for your comments, Adrian. No, my bone marrow is not completely clear of CLL according to my BMB five months ago. You kindly replied to my post then "Venetoclax after 17 months - amazing bone marrow results" which showed my marrow is considerably less infiltrated. I posted the BMB results on which you commented very helpfully.
I have discussed several times with my consultant about adding Rituximab over the last two years but she considers the risk of infections is too high in my case. So at the moment, I continue with Venetoclax until I am told otherwise. As it seems to be still working well for me, I am quite happy with that. I should mention that I have had consultations with a CLL expert, Prof Anna Schuh in Oxford who agreed to review my case. So at the moment, I am carrying on regardless of any potential future problems. Sufficient unto the day is the evil thereof !
David that surely sounds a reasonable approach. Of course things are moving all that time and so you might find your doctors have a totally different idea next time you see them. But the “if it ain’t broke don’t fix it” idea often makes sense! And as time goes on the experts will get clearer and clearer about precisely when to reach for the different options. We hopefully can look forward to many more years of exchanging stories. Sorry id not realised we’d spoken before.
I only lasted 1 1/2 months on Ibrutinib before my oncologist took me off due to side effects. I have been on a cocktail of 400 mg/day of Venetoclax with monthly infusions of Rituxin since January, and this has been so much kinder to my body. The Rituxin has caused some fluid retention and weight gain, but over all, I cannot complain. My doctor is very pleased with my bloodwork, and I am feeling good. Pray your husband has a similar experience.
You are going to do great on Ventoclax. If there are are atypical lymphocytes in the pleural fluid similar to in his blood stream and you can get rid of them. He may have had a pneumonia that did that. It may not be mass. What did PET scan show?
Thank you all so much for your help and information, it really is invaluable and we so appreciate people taking the trouble to reply.
Having seen the consultant again last Friday and having the result of a further scan which showed clear lymph glands the doctor has said that she is keeping my husband on ibrutanib for the time being and not changing him to Venetoclax yet. She feels the steroids are helping him and the pleural effusion may have been a result of his previous pneumonia. There were CLL cells present in the fluid they drained however. So I guess it's a case of waiting to see what happens once he finishes the steroids in ten days time.
We remain somewhat more optimistic although it does feel like we're living on shifting sands. Something I hadn't realised was that he has a low immune system whilst on the steroids ( even though his neutrophils are high because he's on the steroids?) So we're back to being concerned about picking up infections.
Has anyone else had a 'blip' like this happen? And all returned to the status quo?
As usual, thanks in advance for reading this and for any input.
Best of luck to him! I personally feel a great need to get off Ibrutinib after about 4 months. From what I'm reading, Venetoclax appears to be a viable option, which I'll be discussing with my oncologist.
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