Anyone have a problem getting back on Ibruitinib after two weeks off?

[Catnap7]

I developed bad mouth sores and transient oral infection from having my teeth cleaned while my Neutrophils were a little below the fence. My oncologist took me off Ibruitinib so I could heal. I am 8 months into an I and V trial. My Oncologist put me back on Ibruitinib yesterday evening

I woke up in middle of the night with my stomach ballooning out, burning and

then vomiting Wow. I don’t think I have vomited for twenty five years.

How am I going to get back on Ibruitinib?

Should I have ramped up over several days?

I never had this experience when I started it back in November 2018. I could use some guidance please !!! Thank you

Catnap7

[cllady01 Former Volunteer]

I have not been treated, but my question is, did you get an antibiotic for the infection?

Call your Dr. immediately, no matter what others say happened to them on a break and back onto treatment. Others can commiserate by telling you how long they were off treatment, but your infection may be completely different from their experience.

Please let us know how the Dr. responds and esp. how you are doing.

[Catnap7 in reply to cllady01]

Yes I did contact the trial nurse I just wanted to know if anyone else had that problem

I finished my antibiotics about a week ago and to be honest I was feeling super superior ENERGY, highly motivated and on an excited high Haven’t felt that good since years before my diagnosis... I don’t know where all that was coming from..

[Newdawn Administrator in reply to Catnap7]

I’ve followed your story Catnap because I’m also on Ibrutinib (and Venetoclax),

Presumably the infection had worked on the mouth sores before you resumed but I’m wondering if he’d been persuaded to start you back on a reduced dosage?

A ramp up isn’t usually required for Ibrutinib but it could be this has all been too much for your gut biome after the antibiotics hence the sickness.

Must be quite a blow to you after feeling so much better whilst you were off them. Have you had testing to assess level of response (I seem to think you said not yet) but I’m wondering if some degree of resolution had been reached in terms of MRD that a dose reduction might be considered? A BMB would normally be done at 9 months or so.

Have you had to stay off them again now? Are you still taking Venetoclax?

Newdawn

[Catnap7 in reply to Newdawn]

Hi Newdawn

Yes I did ask for a reduced dosage but he said ONLY if the mouth sores continue to be a problem he will reduce it. I put myself with his approval on daily Acyclovir for protection now

Yes I was wondering if the antibiotics messed up my gut also. Maybe I need to get on a probiotic bomb ???

I am supposed to get CT scans in one week but the BMB isn’t due for 8 more months

My trial nurse just called and said I should stay on the 420 mg but spread it out throughout the day and gradually get it back to once a day

I have been on full dosage of venetoclax all along

Well guess I will try the 3 separate times a day. Ya know it’s amazing how I thought I was feeling pretty good on Ibruitinib and then when it was taken away I felt INCREDIBLY good. No couch no nap ...speeding around with so much energy no joint pain only super motivated and on a high. 😜 Crazy

Maybe this is how we will feel when we get off meds and out of the trial

Thank you Newdawn. I am so grateful for this site and for all the amazing people like you

Catnap7

[Newdawn Administrator in reply to Catnap7]

Thanks Catnap and really hope it works out for you. You’ve had a tantalising glimpse of how really good and energised can feel! 😊

Newdawn

[Catnap7 in reply to Newdawn]

Yes and I’m holding on to that GLIMPSE !!!!!! Take care

Catnap7

[Handley in reply to Newdawn]

Hi Newdawn

I've read Catnap7's post and your reply and am obviously concerned. As you know, I've been in hospital for nearly 3 weeks following neutropenia sepsis and now (thank god) am back home feeling much better but utterly exhausted and washed out. I've had 10 days of IV antibiotics, 3 days of IV methyprednisolone, transfusions and filgastrim, and all this has at last restored my neutrophils! Currently I'm only taking prophylactic meds and will be reviewed on Monday so see if I'm fit/strong enough to recommence Ib on Flair. I will have been off it for 28 days by then, but am now eating well and drinking loads; just as well as I've lost approx. 7kg.

I was horrified to hear of Catnap's adverse reaction to treatment beginning again but grateful for the information as it will prompt me to query the way forward. I'm positive and very anxious to get going again and do my part for Flair, but will obviously have to take advice and follow it! If poor Catnap's misfortune was due to residues of other medication within the body, I hope 8 days will be enough for me to clear out my system. I got on well enough with Ib on first introduction and had naturally assumed this would be the case again...….

Sorry if I appear selfish, but you kindly did ask that I keep you up to date. Life seems to be extraordinarily complicated at times, but we have to keep up positive thinking.

I hope your aches and pains are easing and wish you the best. Handley

[Newdawn Administrator in reply to Handley]

I’m so glad to hear you’re now out of an extended stay in hospital and your neutrophils are on the up Handley.

Unfortunately my neutrophils are now sliding and it’s obviously a real concern.

I can appreciate your concern about re-starting treatment particularly in view of Catnap’s unfortunate experience.

Hope it goes well and is much less complicated going forward.

Best wishes.

Newdawn

[Hidden]

Not me but i have read of a man off nearly a month because of severe rash than restarted with it appeared was no loss of recovery

[Catnap7 in reply to Hidden]

Thank you !!!

[ronbuc]

I have been on Ibrutinib for four years and thought I was finished with skin infections. However, since resumption of Ibrutinib post surgery in November last year, I have had a return of skin infections in the form of recurring spots which form a yellow head. Those on my hand responded to anti-fungal ointment and have gone, but despite the ointment and a course of antibiotics, the spots on my nose are persisting. It’s not serious but a bit embarrassing.

[NooNoo14]

Over the last 3 months or so I have had to have 3 eye injections, each one separated by a month. I was told to stop Ibrutinib for 6 days (3 days before and 3 after).

After the first 2 I had no problem restarting the Ib but this last time (restarted last Friday) I felt so sick and dizzy I could barely move. I took one of the anti-sickness meds included when I first started the Trial (I took one on the first day after feeling nauseous). As previously the pill knocked me out for the afternoon and felt slightly better when I woke up.

Over the next couple of days I had very short spells of mild nausea which quickly passed but am suffering with slight acidity. Not sure why it happened this time only.

Netty

[MsLockYourPosts Passed Volunteer]

Catnip - Any chance that the cause of your sudden illness coincided with you going back on Ibrutinib, but was not caused by it. A stomach flu, food poisoning? When my mother had an episode like that she decided it was because of tainted fish. 12 hours later she was in the hospital for gall bladder surgery. It's hard to imagine seeing any of those as better possibilities. Dealing with CLL often makes us re prioritize things. I hope that you are back to that feel good high soon.

[Junibird]

My husband had to go off of Ibrutinib for more than 2 months due to surgery and did not have any problems with restarting the Ibrutinib.