CLL and Crohn's

[GumboKing]

I am 8 years into CLL and 40 to 60 Years into Crohn's Disease. I have been on Imbruvica for 3 Years and currently take 280 mg per day due to severe bleeding and Neutropenia problems. I had thought my Crohn's was dormant or nearly so for about the last 20 years. Due to recent problems my gastro Dr. Had a series of small bowl x-rays done recently and has decided, by way of his nurse, to say that it is very important that I start on Entivio infusions soon. I am very apprehensive about taking both of these very powerful meds at the same time, especially since Entivio sometimes induces Lymphoma. Maybe someone out there has this or a similar situation and will share their experiences. Thanks. By the way, I have not posted here before.

[Dom57]

Hang in there. I have had CLL for 12 years and have had IBS for 30 years off and on. Also been on Imbruvica for two years and have been cut back to 140 mg per day. It is hard but I try to go day by day.

[RJR1 in reply to Dom57]

How are your blood stats at 140 mg? I'm at 480 with good numbers and keep asking " how about reduced dose"

[Dom57 in reply to RJR1]

My blood stats are normal and have been for 6 months. I was on 420 for 16 months and 280 for 3 months. Now on 140 for a month. I was starting to have a lot of joint pain so they started dropping it.

[RJR1 in reply to Dom57]

Hmmmm.... I've been on 420 for nearly 3 years... no joint pain at all.

I just might lower my dose on my own and see what happens

[AussieNeil Administrator in reply to RJR1]

From your earlier reply, I take it that your specialist doesn’t want you to reduce your dose? Rather than doing so on your own, ask why your request to reduce your dose hasn't been agreed. Don't forget that blood test numbers only show the easiest and cheapest way of monitoring part of your tumour burden in your peripheral blood. Without a bone marrow biopsy and CAT scan, you can't know what your CLL is doing there. The relative tendency for CLL to accumulate in the blood or nodes varies by patient and over time, plus it can change as a result of treatment.

Neil

[RJR1 in reply to AussieNeil]

She seems to be following the drug companies lead as to not enough historical data to support reduced dose. I've had the " why not " discussion

[AussieNeil Administrator in reply to RJR1]

When a CLL specialist who has been involved in bringing Ibrutinib through to FDA approval and prefers treating his patients with Ibrutinib (including lowering their dose when necessary) has this to say about the study into dose reduction:

healthunlocked.com/cllsuppo...

then I hope you can appreciate your specialist's concern is well placed.

Neil

[AdrianUK]

I think that your nervousness makes Perfect sense. And this is why speaking to a really top cll expert who may have had a similar situation to face before or who can use their clinical expertise to figure this out with you will be crucial. It may be few if anyone has had to figure out what to do in these kinds of situations. So get yourself some top advice and get your experts talking to each other.

[Davemich]

Hello! I also have crohn’s and cll/sll. I am 61 years old and had crohn’s since the age of 13 and cll/sll for 9 years (diagnosed at age 52). I have been on Entocort for my crohn’s for 25+years. I don’t know how severe your crohn’s is - I have had multiple surgeries and have short bowel. I was on Ibrutinib in 2016 and it worked excellent for my cll/sll however diarrhea and bleeding were too severe and I had to stop taking. I don’t have any experience with Entyvio so I’m sorry I can’t help you there but I would also be concerned about the increased risk of lymphoma when you already have that. We are both in a very tough spot because as I am sure you know crohn’s in itself is a very debilitating illness and now we also have to struggle with lymphoma. In my case I am struggling with treatment because most of the new targeted treatments all cause diarrhea which I already struggle with daily. I wish you all the best!

[GumboKing in reply to Davemich]

Hi Davemich,

I'm not familiar with Entocort or any other current Crohn's meds. I have considered myself non-clinical for many years. A very fortunate circumstance for me. But I have been having diarrhea, sometimes quite bad, off and on for the past 6 months. Hence the recent gut x-rays. But I have little to no pain so I wonder if the problem seen on x-rays is just old damage. Absent of pain, the radiologist favors scaring or stricture over acute inflammation. 40 or 50 years ago my pain was severe and continuous. But I still have a full set of intestines. No surgeries for Crohn's. And maybe the diarrhea has some other cause. More investigation might be prudent before starting another therapy.

I hope things get better for you.