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CLL Support Association
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stopping Ibrutinib

I had to stop Ibrutinib for 7 days prior to an operation to remove a cancer tumor from my bladder and another 7 days after the surgery.

Also, in 3 week time I am to start a once a week (for 6 weeks) infusion of BCG directly into my Bladder. BCG is a weakened form of Tuberculosis. This tricks the body into producing cancer fighting cells that would inhibit/stop the (quite likely without treatment) cancer tumor to reform in my bladder. I have another note to my doctor asking if he will want me to stop ibrutinib for those 6 weeks as well. As for the treatment side effects, they are supposedly worse than if my bladder doctor just hit the bladder with traditional chemo. The difference he said is that the BCG treatment is much more successful.

I feel confident I will survive the bladder cancer treatment...but I feel I am in a little bit of uncharted territory as far as CLL and ibrutinib is concerned. I have been on Ibrutinib for almost 2.5 years. I suffer no symptoms of CLL and haven't for quite a while, so maybe that will help me in the long run. Has anyone else stopped their CLL treatment for a significant amount of time and returned to their treatment afterwords or did they do something else?

Cheers, Barger1951

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Hi I am currently off ibrutinib 2 weeks, 9 months into treatment for first cataract opp. I will be off another week then restart. I will need to come off again 4/5 weeks later for 2nd cataract opp. So far so good. I have had no CLL symptoms and no lymph nodes reappearing which I have read is common off Ibruitnib. I don’t know if this helps you but this is my experience so far.

Good luck with all you have in front of you.

Ann

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Thanks for your info, yes it helps!!

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Thank you!!

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Hi barger1951

My dad had to come off ibrutinib for 6 weeks ( he had been on it 6 months) after getting pneumonia, sepsis and cdif and has been back on it now for 2 1/2 years no problems. Good luck xx

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Thank you!

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I wish you well as you go through treatment for bladder cancer. I have a friend who has done well with same treatment that you will be having.

The researchers who are using a combination of drugs (ibrutinib & venetoclax) to put CLL into deep remission feel that the drugs will still be effective if the CLL comes out of remission.

My only experience with stopping ibrutinib was 3 days before & 2 days after cataract surgery. I also stopped prior to oral surgery but it was a short period, too. (4-1/2 yrs on ibrutinib)

Lynn

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Thanks Lynn

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My husband had the BCG treatment and it worked well. He says BCG has something from tuberculosis in it. That's a big question to ask since we are immunosupressed!

Definitely a doctor question!

Virginia

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Thanks Virginia

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I stopped Ibrutinib 3 weeks for MOHS surgery after being on it for 8 months. My improving numbers reversed direction. It was several months after restarting Ibrutinib before my numbers again started improving. I didn’t notice any increase of side effects. Good luck.

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Thank you.

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Hi Barger1951,

I stopped IB after taking it 3.5 months. My ALC didn't start rising until 2 months later, and 3 months after stopping IB my ALC had risen to 75% of the ALC level when started IB. So it looks like ALC would have gotten back to pre IB levels after being off of it for 4 months.

I'll post a chart of this in a new posting since I can't post a photo in a reply.

After being off of IB for 5 months I've started taking Acalabrutinib.

Good luck with your treatments.

Bill

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Thanks Bill

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Hi barger1951:

Last year I stopped Imbruvica for 3 months, due to complications from the drug. During that time, my WBC climbed to 149, but I never had any symptoms from it. I had been on Imb. for 15 months, which had dropped my WBC to under 25.

I've since switched to Calquence because of my Imbruvica side-effects, but until the side-effects, it had been very effective against CLL, and my 3 month "pause" didn't cause any problems (although I wouldn't want to go much more than that).

As always, remember that each CLL patient is unique, so what worked for me may, or may not, be appropriate for you.

Gary

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Dear barger1951. Sorry, but rather than answering your question I have my own...I was diagnosed with CLL stage 0 10 years ago and had no treatment. For the last 6 years I'm visiting with multiple Urologists for pains and random bleedings while urinating. Went through multiple cystoscopies. The biopsy during the last one (8 month ago) identified CLL cells in the bladder lining. So I got started on Ibrutinib. So far, no relief of my urological issues and I'm concern that we are missing something. Could you please let me know, what was your symptoms and how long did it take to find cancer in bladder? Did they identified CLL in bladder?

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CLL is a blood disease that is in your blood, not a specific body area. You need to see a CLL specialist ASAP.

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Thanks a lot for your replies. I'm seeing Hematologists for over 10 years now. When the last cystoscopy was done by the Urologist he made a statement that "your CLL wrecked the bladder lining". The biopsy didn't show cancer. They called it bladder CLL. When I talked to hematologist (Dr. Byrd at OSU) he explained that CLL can attack the internal lining of various organs but he never saw it in bladder. Apparently nobody did. I'm searching web and could find only1-2 cases described. My Urologist never saw it either. So I'm trying to find my way through it. Looking for a second opinion with a Dr who knows how to deal with bladder CLL.

Best Regards

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Hi, my doctor at Stanford is Dr Steven Coutre a well known CLL specialist. There are no CLL Bladder specialists, you will not find one. People come from all over the world to be treated by Dr. COUTRE hopefully maybe you can contact him.

GOOD LUCK TO YOU!

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Thank you very much! Kind Regards

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I had a cancer tumor growth. They saw something in a blood test. Next they had me do a CT scan with iodine. After that I saw a urologist who used a scope, he brought up the actual tumor on a monitor. After that he suggested a doctor who specializes bladder tumor removal. Good Luck! Barger1951

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I did have a burning sensation when I urinated.

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My husband went off Ibrutinib in March due to a heart attack. It's now been nine months and his blood work is normal, and his enlarged lymph nodes have not returned. Of course things could change at anytime, but so far, he is feeling and doing well.

I wish you a speedy recovery with your procedure.

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Thank you!

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Good on you for your great outlook on overcoming the bladder cancer. It's difficult when we have to face more than our share of diseases and their treatments. I've had to stop my ibrutinib on several occasions over the years for various reasons: bleeding, dental surgery, eye surgery, sepsis, etc. but not usually for more than a week to week and a half at a time and had no problem going back on, no untoward symptoms returning.

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Thanks, I appreciate it! Oddly enough my numbers improved while I've been off the medication, so my doctor is green lighting me for a 1 month vacation from Ibrutinib. Cheers barger.

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