CLL and Crohn's Disease

[CLLToronto]

I have been recently diagnosed with CLL. I have the P17 deletion. In 2003 I was diagnosed with Crohn's disease. I've been taking Entivyo since 2017. My Crohn's disease is relatively in control however, my CLL is now getting worse. My Oncologist wants to start me on Ibrutinib fairly soon. I am very concerned that taking Ibrutinib is going to cause my Crohn's disease to flare up. However, if I don't take Ibrutinib my CLL is going to get worse. I am stuck between a rock and a hard place. Has anyone with problems had any success? or this simply a case of treating one issue and starting a new one that won't be so easily treated? I would like to hear everyones thoughts on this.

[Panz]

Please consider locking your post as you may get more replies...welcome to our community and I want to wish you all the very best as you make your decision and continue your journey. Happy Easter! 🙏🐣🐥🐰

[cajunjeff]

I don’t know of ay connection between Chron’a and Cll. Ibrutinib is known to have a lot of side effects, for most they are manageable mild to moderate side efffects and less serious side effects from Cll chemo patients.

My only input would be, in assessing risk of side effects, would be that risk for side effects with ibrutinib are considerably less than the serious and almost certain side effects we would get by not treating later stage Cll.

I don’t think anyone can know what side effects they will get with taking ibrutinib. You just have to take it and see. If you have a really bad side effect then you would consider stopping ibrutinib and trying another drug, but every other drug you might take will have it’s profile of risks. We don’t get a free ride with any Cll drug.

I don’t think it’s a real rock and a hard place decision, I think if you need treatment you have to treat rather than not. Ibrutinib is now the agreed upon front line therapy for 17p Cll. I think you have to try ibrutinib and deal with side effects if and when they arrive. Good luck to you. Jeff

[cllady01 Former Volunteer]

CLLToronto, welcome to CLLSA, where we endeavor to share our experiences, support each other, and educate ourselves as well as each other.

CLL and Crohn's Disease are both immune deficiency diseases--and there are many others and the treatments for each are different. So sorry your are having this situation to deal with. One is more than enough to have, but there are others who find themselves in your situation. You need expert, well-experienced physicians to work together for your treatment. Ask your Drs. to work together if they have not so far. It is important for you to have them talk to one another and to maintain a relationship in regard to your care, exchanging information regularly.

I hope you are in the care of such a CLL hematologist/oncologist and gastroenterologist and that you can ask them to work together to get your treatment plan coordinated.

This is the advice of Dr. Lammana in a 2016 video: patientpower.info/video/how...

Treatment time is a good time to get a second opinion, whether you change Drs. or not.

Please let us know how your discussion regarding treatment goes. Also, should you feel you need to get a second opinion and/or to change CLL Drs., here is a list of patient recommended specialists from which you might be able to choose.

cllsociety.org

[Davemich]

Hi CLLToronto, I too have both crohn’s and CLL. I have had crohn’s for almost 50 years (since 1970), and was diagnosed with CLL in 2009. Unfortunately I have had many bowel resections since back in the 70’s there were no drugs to treat Crohn’s, so my situation as far as the crohn’s hopefully is not as bad as yours. I have been on Entocort for my Crohn’s since 1997 and it has kept my Crohn’s in control somewhat. I was treated with Ibruitnib in 2016- starting with 3 pills, eventually dose reduced to 1. It was working great for my CLL, but unfortunately crohn’s flared- the diarrhea and other side effects were life threatening so I had to stop due to toxicity. I am currently on Acalibruitnib - one pill - the side effects are not supposed to be as bad and so far I am fairing well - time will tell if it is working on my CLL 🤞🤞I will be scanned in a few months (my CLL is predominately in my nodes).

Although Acalibruitnib is not yet FDA approved for CLL, I was able to get approved off-label. I, too am constantly stuck between a rock and a hard place because unfortunately most of the “new” meds for CLL, diarrhea is one of the major side effects. Life becomes extremely difficult when you have both of these to deal with. I wish you well and please message me if you have any questions/concerns, hopefully I can offer some advice, since I am, for the most part, in the same situation as you.

[ladymoyock]

Hello. I also have Crohn’s and CLL. On Stelara for my Crohn’s for a year now and seems to be doing well. Just started Imbruvica today because of skyrocketing WBC and major fatigue. I also have the same fear that my Crohn’s will flare but as others have said, I’m not getting any better not taking the CLL drug so we’ll see. I’ll keep you posted......

[GumboKing]

Hi, CLL Toronto, I have CLL as well as Crohn's. My crohn's goes back to about 1960 and I have had several brief but very severe episodes with it. Otherwise it has been little more than a minor problem. My gastro guy tried to put me on Entyvio several months ago. At that time I was in the hospital with food poisoning and had no reason to believe that Crohn's was the problem so I declined the Entyvio.

I was on Gazyva in 2914/2015 and it seemed resulted in constipation rather than the

expected worse diarrhea. A totally unexpected result. I have been on Ibrurinib since early 2016. Did 3 pills for 1 year and 2 pills since. I haven't had diarrhea that I can attributed to Crohn's. I did start on a Imbruvica + Venetoclax trial at MDA in Feb. Since ramping up the Venetoclax to 400mg/day I am experiencing some diarrhea about every third day. I take one or two anti-diarrheal pill(s) and I'm good for several more days. I think the on again - off again diarrhea is most likely due to Venetoclax and hopefully will resolve soon.

The side effects of the various CLL drugs vary a lot from person to person and with dosage. I would not hesitate to start Imbruvica. The dose can be adjusted if needed.

Also, I have 13q and 11 q deletions as well as other dna problems.

Hope it goes well with your CLL and Crohn's as you wrestle with your decision.

Paul

[Hoffy]

I did well on a clinical trial combing Imbruvica plus Venetoclax. If you start having issues with Imbruvica you could maybe move to Venetoclax. Because you are in Canada I am not sure how that would work though,

Be well,

Hoffy