Bad tooth and ibrutinib

[oldguy68]

Has anyone on ibrutinib experienced a bad tooth that could not be fixed and needed to be pulled. And this is with a white count over 300,000.

[cllady01 Former Volunteer]

The important blood levels to be concerned with are neutrophils--and with the consultation of your Dentist with your hematologist/oncologist, you can be treated---there may be a need to stop Ibrutinib for a time; that is an individual Dr./patient situation that has to be discussed and carefully handled.

See this former post for a similar situation: healthunlocked.com/cllsuppo...

[oldguy68 in reply to cllady01]

Absolute neutrophils are 10,723. Had blood test yesterday after leaving dentist. She had consulted with my oncologist on the phone and was told do not proceed until the new blood test is analyzed and the oncologist will get back with the dentist on what to do.

From what I have been reading it sounds like anybody that's on watch n wait and may end up on ibrutinib or whatever drug should really consider having their teeth checked first to be sure it looks like they'll have no issues coming up as far as dental work goes. Also I had no idea that when I got sick the week after starting Ibrutinib that the pneumonia I ended up being diagnosed with very well could have been caused by the drug. I guess I'm just as dumbfounded how an oncologist does not discuss any of these things. and the fact that you should be closely monitored with much more frequent blood test in the beginning which again my oncologist did not do, I have since changed oncologist.

[MsLockYourPosts Passed Volunteer in reply to oldguy68]

You are absolutely right about seeing a dentist and having any needed dental work taken care of before starting treatment if possible. It’s good that your doctor and your dentist are communicating with each other.

[oldguy68 in reply to MsLockYourPosts]

Yes the WBC was 132000 then I started imbruvica 3 days later I was in the hospital with pneumonia and the WBC was 302,000. The hospital had no idea what to do when they saw that white count so they sent me to the medical center in downtown Houston. Alc was that high and monocytes were832,000 . that's not a misprint.. have been on imbruvica now for I'm just finishing the second month then the tooth issue came up just took a blood test and waiting to hear from oncologist and dentist what would be the procedure now.

[MsLockYourPosts Passed Volunteer in reply to oldguy68]

Sorry - I read ALC, not ANC. I will delete the incorrect information. I hope that the tooth isn’t causing pain or infections. Checking your current labs before going ahead with the tooth extraction makes sense, especially since you were so sick recently.

[oldguy68 in reply to MsLockYourPosts]

No problem. Thanks for your info

[shazie in reply to oldguy68]

I had to extract a tooth last month. I stopped Imbruvica two days prior and restarted the day after the surgery with no bleeding but I took Amoxicillin for five days starting the day of the surgery.

My oral sergeant was more concerned about possible complications with Imbruvica. My oncologist wasn’t concerned at all.

[oldguy68 in reply to shazie]

That's interesting because my oncologist told the dentist do not go forward with anything until she gets back to them. There are so many issues related to people with CLL.

[mrsjsmith in reply to oldguy68]

Agree with MLYP,

Before I started Ibrutinib last year I discussed a problem crown that might need removal with my Haematologist. She suggested having extraction pre treatment. I luckily decided to take the risk and it has improved.

[oldguy68 in reply to mrsjsmith]

Do you remember what your white count was and absolute lymphocytes?

[mrsjsmith in reply to oldguy68]

White was very high at about 120 but don’t remember any other counts !

[narl in reply to oldguy68]

I had a tooth pulled before I started on my IB treatment in February and I’ve been hurting for a while but they couldn’t figure out what was wrong with it (it was a cracked root)He just told me ,the oncologist,to hurry up and get pulled so I can start IB my white count was 343,000. I have been on Watch and wait 14 years but my other numbers were starting to go downhill in the last year also

[oldguy68 in reply to narl]

Narl, so I see you got your tooth pulled before starting imbruvica . That's interesting that your white count was over 300,000 first. My white count was 130,000 when I started imbruvica. And while I think about people in our mature age bracket I'm sure most did not go to the dentist on a regular basis back in the day. It sure seems like from what I've been hearing or reading that everybody should be warned about their teeth that are on watch and wait because watch and wait normally is for several years. You got shingles from the drug and I got pneumonia. It's a jungle!!🙃

[narl in reply to oldguy68]

Yes i had been on watch and wait for 15 years. I am 61 now. My mom also got it early when she was young. She had a total of 16 years but she had a richter transformation five years before she passed.

[narl in reply to narl]

I miss my point which was her white count was in the 600,000 before she ever got treatment

[oldguy68 in reply to narl]

Wow! Makes me wonder with no effects of any kind of why I was put on the drug at 132000!

[narl in reply to oldguy68]

I don’t know. If your other counts were good and you didn’t have big lymph nodes or spleen problem I don’t know why you would have been. 132000 would have been good to me. I looked it up and i was over 132000 since april of 2016, so 3 years.

[oldguy68 in reply to narl]

Narl,

thanks for the input; I don't see why I was put on the drug at 132,000; especially with no adverse symptoms; then get Pneumonia; and go up to 302,000 immediately. Have changed Oncologists; new one has been much more helpful

with everything; I guess it doesn't change, we learn as we go.!!

Interestingly, first Oncologist put me on the drug about 4 years ago when count was 40,000; then I got second opinion, and did not take the drug back then.

So I am on my third Oncologist now.

[narl in reply to oldguy68]

Sorry to hear your dr. Problems. Usually I think if your counts go up when starting IB it’s because you have a lot if cll cells in your lymph nodes hiding. Mine are mostly in my blood so counts did not increase at all when I started it.

[oldguy68 in reply to narl]

What you say about CLL cells in blood and hiding I didn't know any of that stuff. Blood test came back my white count went down by 40,000. Absolute lymphocytes and monocytes also went down. Yeee haww!!🤣

[narl in reply to oldguy68]

Thats great. Mine wbc has went from the 343,000 to 34,000 since i started IB in February. I also dropped down to only 2 pills a day 2 months age. My lymphocytes are still high though.

[oldguy68 in reply to narl]

Narl,

you say you drop down to two pills a day could you tell me what size your pills were, I am only taking one of 420.

[narl in reply to oldguy68]

I took 3 that equaled 420 mg a day, Now I only take two which is 280 mg a day. They made me tired, so when he asked if I felt better or worse since taking IB, I said definitely worse, he dropped me to two. My neighbor also takes IB so when he said he slept all the time, I told him to tell his doctor, (not same dr. I have) and they dropped him to 280 mg also. He started having the muscle pain, so they have dropped him now to one pill of 140 mg. a day.

[narl in reply to narl]

You might be interested in going onto the cllsociety.org site and signing up to have a face to face online appointment with a CLL expert, you can get a visit with an expert, first they will send for all your medical records and then go through them and set you up. it is no charge, and a 30 minute appointment. I did one with Dr. Choi. On the site at left, it says CLL expert access apply now, just click that, if you want to do it.

[oldguy68 in reply to narl]

Thanks for the info. The sleeping or chronic fatigue I have read many people seem to have this problem including myself. I can't get through a day without taking a nap. But for a while there, there were days I didn't even go out the door feeling so fatigued. But after a couple of months I find one nap is sufficient.

[MsLockYourPosts Passed Volunteer in reply to narl]

Link is Cllsociety.org. I learned, after failed attempts to post links, that you have to type out the whole www thing for the link to work.

Some people are started on imbruvica because of bad fatigue. You would have to ask your doctor what the deciding factor was in your case,

[Ellieoak]

Oldguuy68, I had been on Imbruvica and had several teeth extracted. I did not give up on my Imbruvica but I did take 4 antibiotics just before each procedure. Anna