constantly have infection

[farber]

hello team, I have CLL for 10 years After I started Imbruvica for the last 4 years started to have UTI or oral infection. The last time during the last 2 months have 4 times infections. Constantly on Antibiotics which is very bad. I would like to talk to my doctor Daya from NYU if I should switch to other medication with less side effects or start infusion. Any advice will be appreciated.

[SofiaDeo]

If your immune globulins are low, perhaps infusions of that wil help. If your neutrphils are low, perhaps G-CSF will help. If you eat a lot of sugar/carbohydrates, cutting back may help. Depending on what is causing the "oral infections", IDK what to say, other than keeping up with dental appointments/good oral hygeine/stopping smoking if you smoke, can help.

I note "kidney disease" in your tags, if you have kidney disease, that complicates the UTI problems, and is best to speak with your nephrologist. Do you have stones that are getting infected, or what.

[50hourworkweek]

I understand that rinsing with warm water, salt and baking soda can help prevent the oral sores. If that isn't effective your provider could prescribe Magic Mouthwash which is pretty terrific stuff that contains some lidocaine to help any soreness.

[LeoPa]

Are you on IVIG?

[totara]

I had mouth sores and ulcers for the first few months when I started my ibrutinib in January 2021. I used difflam spray when they became annoying. Now watch my diet and gave up alcohol the day I started ibrutinib. Only had an ulcer once in 2023, touchwood and used difflam spray to sooth the pain and reduce the inflammation.

[EmilyLondon]

Are your antibiotics being changed regularly so infection does not develop antibiotic resistance 🤔

[virdieblue]

I had a problem with UTIs while on Ibrutinib. If you check the listed side effects you'll see they have added them . My urologist recommended D-Manose, as a supplement. It helped me.

Virginia

[farber in reply to virdieblue]

thank you. Will try this product

[theclarksark in reply to virdieblue]

D mannose daily has stopped my recurring UTIs also

[larrymarion]

Mouth sores after starting Ibrutinib is not uncommon. I had horrible/terrible/devastating mouth sores within six months of starting. Took my docs weeks to discover i had Cocksakie virus which meant antibiotics weren't helpful. Needed anti virals, but i was allergic. So i ended up with gamma globulin infusions, a.k.a. IVIG.

As others have noted, Magic Mouthwash is excellent. Diet changes also relieve the pain. Another question for your hemocs is whether you should continue with ibrutinib. After four years your tumor load may be quite low and stable--it may have plateaued, like mine did after 5+ years on Ibrutinib. My hemocs offered three options:

1) just stop the drug until blood levels/physical symptoms show the CLL returning

2) switch to another BTK less likely to trigger these problems (zanabrutinib has a much better side effect profile)

3) rather than take a BTK forever, switch to venetoclax and try to get to uMRD

i chose #3 and 16 months later i was uMRD. And i've stayed that way for almost three years.

[DoriZett]

Just to add to the Magic Mouthwash discussion: I used 1/3 baking soda, 1/3 hydrogen peroxide, 1/3 warm water and swished it around in my mouth, 2-3 daily. My oncologist recommended it, it worked, and I preferred it to the prescribed lidocaine version because it didn't make my whole mouth numb. When I had a mouth sore flare, I would mix up a little bottle to last about2-3 days, and warm my "dose" before each use. I hope that helps. They were painful and occurred every few weeks when I was in active treatment. They began about 10 months after I started treatment (with Acalabrutinib) and lasted until about 3 months after I stopped (back in W&W now and no mouth sores)

[AnneHill]

I had uti's often before starting Ibrutinib. Things are improving. I had checks and a scan showed I was not completely emptying my bladder. I wait a few seconds and can usually go again. I drink a lot of tea and water and take a cranberry supplement.Ask your doctor about a hormone cream inserted into the vagina. When I have a uti a urine sample is sent away and the correct antibiotic is given. Also I find I need a longer course.

At one time I had a small antibiotic tablet to take each day for prevention. There is also a tablet the doctor can give if you have thrush. D Mannose works but you have to drink loads of water to flush it out. I put a small bottle of water in my bag when I go out as I dont drink enough if Im out for a few hours.

Sorry about the long list. As you can tell, I have tried lots of things. Anne uk

[farber in reply to AnneHill]

thank you so much for your responses

[splashsplash]

I agree with AnneHill. A small amount of urine left behind can become infected and cause UTIs. My consultant suggested completely emptying my bladder each time to prevent my numerous UTIs and it's worked.