sickness and diarrhoea after 20 months on imbruvica

[nobby00]

hi every one, my husband has had weeks of sickness and diarrhoea he has lost so much weight .Stools samples showed nothing. He has been told to stop imbruvica for a week to see what happens .In the 20 months he has had very few side affects some tummy problems but felt well and was enjoying life . His white blood cells lowest count was 65 now 145. Is it possible to have a toxic reaction after all this time or has the drug just stopped working . he is 17pd .thanks lin

[Cammie]

Like all medications the effects cumulate over time.

It is quite possible that his system is now at the stage where this cumulative effect is what is causing the problem.

After stopping and if he improves then The medics will be sure that it is the medication that is causing the side effect.

[thompsonellen]

It is possible to become resistant to ibrutinib. I'm in a trial, and they test me every three months to see if ibrutinib is still working. In my case, if I loose a few pound, they ask if it's intentional. I'm also 17p, and we have more risk to become resistant, so if it were me, I'd schedule a visit to see his doctor. Not sure where you are, but venetoclax is a new option that is FDA approved as a second therapy for him. Sorry you are going through this.

[walkingspirit33]

Nobby00, Sorry to read of your husbands suffering.I have been on ibrutinib since Sept. of 2015. I started loosing weight Jan. of this year unintentionally.And getting extreme fatigue. the onc. kept saying white counts were goo, then in March they had started going up.Until that time my dosage had been reduced to 1 tab a day. As soon as I started back at 2 tabs /day things really started going south.Fatigue , diarrhea,nausea got bad .It had gotten to the point that I could barely walk to the john and back without having to get back in bed for hours at a time. All this time the Dr. kept talking about good white counts..he seemed at a loss or unwilling to discuss what was happening to me.I had to have a cane, use a wheel chair to get to appointments. Oct. first after blood tests from my infectious disease he immediately sent me for some more tests, found my potassium levels where in critical levels and had me hit the ER. I spent the next 8-9 days in hosp, where all tests showed an infection but could not locate where.The hosp. team determined it was from the inbrutinib, which evidently a common side effect and suspended it for hosp. duration. I started a rapid improvement.I have since slowly regained energy(not as much as before) but I now can walk unassisted.I am now also taking thyroid med;which I think is main cause for increased energy. Onc. started up inbrutnib after stay and at a partially lower dosage.I am still far from well....and have gained no weight nor lost any..so I guess that is good...I cannot offer any recommendation , but this was and is my experience...During the worst ; I could see no light and unfortunately the Dr. offered little help. He saw all this happening but to my mind did little. I really figured it was over for me...guess not,lol.Make sure your Dr. is not only aware of these symptoms but that make him answer you questions.

Good luck and God speed.