Temporarily lowering dosage: I’d like to hear... - CLL Support

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Temporarily lowering dosage

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I’d like to hear from those of you who temporarily lowered the dosage of Imbrutinib/Imbruvica. Please tell me if that made your side effects stop. I’m taking 420mg daily, going on vacation in two weeks and have painful tongue sores and pain swallowing. My oncologist prescribed a mouthwash (the steroid Dexamethasone)that I just got yesterday and also is calling in a lower dose of Imbrutinib. Don’t know the new dose yet.

I’d really like to stop taking it completely for the week before and the week of the trip, but of course wouldn’t do that without his approval. All my markers have improved since going on Imbrutinib in December after nine years of w and w. My WBC count has decreased from 230,000 to 98,000. Every other marker is in normal range. Thanks.

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My undertanding is that stopping even after a few years can allow the CLL come back with vengeance, and it might not be possiable to restart again.

On the other hand lowering the doseage is viable.

bloodjournal.org/content/ea...

but others say no

healthunlocked.com/cllsuppo...

But most side effects of Ibrutinib are minor and go with-in a week or so.

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Hidden in reply to zaax

Thanks. My oncologist will most likely lower dosage temporarily as opposed to telling me to stop completely for the two weeks in question.

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the package insert for the drug and if you google the question is if your having minor surgery or having tooth removed hold imbruvica for 3 days before and 3 days after. Major surgury is 7 days before and 7 days after, most things i have read say that will not end imbruvica effectiveness

Hiya,

I’m also on 420 mg and found my solution to combat any mouth ulcer has been gargling with salt water Ive always used this since having CLL I do it throughout the day. If I get an ulcer it usually goes within a week - and oh yes stay away from tomatoes or anything tomato related - they Encourage mouth ulcers and make them worse (as I found out).

I wish yours a speedy exit and enjoy your holiday. I havn’t had to reduce my dosage 👍

I've been taking 280 mg of Ibrutinib for nearly one year, with great results and way fewer side effects than I read of here. The thinking was to "ease into it" and try to avoid the more severe side effects. And it works very well! My numbers are very good and I feel great, for the most part. Do talk with your Doc about trying the dose.

You know, if you had to have some kind of planned surgery, the medical advice would be to stop IB one week before surgery and one week after due to risk of bleeding.

So, . . . . . . .

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retired46: Thanks for the tip about tomatoes, I did not know that. Unfortunately they are my favorite part of my daily lunch salad, but I will do anything to get rid of the tongue sores. And I do swoosh around hot water with baking soda often. Plus now have the prescription mouthwash.

AmericanRonin
AmericanRonin in reply to Hidden

I had a horrible mouth ulcer issue that felt like my mouth was cut up with razor blades — and I pegged that as a reaction to walnuts (which I never previously had an issue with). I will avoid walnuts forevermore.

I have had my Ibrutinib dosage stopped twice and dosage lowered from 420 to 280 to current dose of 120 due mainly to netrophils getting quite low. They seem to be holding now for the past few months on 120 dosage as numbers look good. I have noticed that my muscle or joint aches have eased up a bit since. Haven't had issues with mouth sores but have been dealing with rash on lower legs for the past month. I have swabbed tea tree oil on canker sores in the past with good success even though it is not to be ingested. It's in my toothpaste so I think it's ok used with a q-tip. Good luck

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Hidden in reply to rubberlegs68

Thanks rubber legs. Great name by the way.

Matt, I don’t really fully understand why one would stop taking Imbruvica for any reason other then medical...I really an not judging anyone but I feel I am so very fortunate to have been given the that option I would never what to take any chances....just me thinking out loud. I would move Heaven and Earth to get the mouth issue squared away! All the best I. What ever you decide! 😍💕☘️🙏

Hidden
Hidden in reply to Panz

As I stated in my post, I asked my oncologist’s approval to temporarily lower dosage or stop taking it (for two weeks) due to very painful tongue sores. He is getting back to me tomorrow but already seems ok with both options. Again, only for a couple weeks due to upcoming cruise.

Panz
Panz in reply to Hidden

As I said I wasn’t making judgement and I feel I owe you a brief explanation on my response to you. I have been dealing with CLL for 30+ years and receive IVIG every 4 weeks and labs are done once a month. I do not go out for very many reasons. I have been told that cruises an dflying are two very bad places due to the possibility of infection. I don’t eat out except for early Sunday morning breakfast to a place opening at 6:30-7:00am, no shopping...only on line. No Church, theater,or social gathering of any kind. I do go grocery shopping at 7:00am or late at night. You see I live a very Spartan life but I am loving life!!! I have no complaints. My husband travels th world and the USA with our youngest daughter and I am very comfortable with that. Knock on wood I have not been ill for 3+ years so my Spartan life has served me well. We each do what keeps us in a good place! All the very best! I am just a person of great transparency.

☘️😍💕🙏

Hidden
Hidden in reply to Panz

I am very active and my oncologist says all my markers other than WBC are in the healthy range, and WBC is improving. I will not live a Spartan life unlesss my doctor tells me to. I will continue to enjoy life, work out, run and hike and, especially, our upcoming cruise. It’s music themed, with many famous bands from the 60’s and 70’s, so we will dance a lot. I’m only 65, work full time on television and in good shape. But to each his or her own. I wish you the best.

Panz
Panz in reply to Hidden

I am truly happy you are in your safe place and are active. I also am a big biker 5-10 miles a day, walk 10,000 steps and do weights in my own home so I am very happy we’re I am. As you said to each his own and thank goodness we are all different! dance your heart out!!! Hope you get the green light to go! 🌞🌞🌞🌞

☘️😍💕🙏

120940
120940 in reply to Panz

My husband and I gave up going to church or festivities with crowds and we don’t hug or shake hands with anybody and so far he has not had a flu or cold this past five years. He has never had flu shots or vaccines. Wash your hands when in public . Don’t touch any doors or menus or magazines.

Hi Matt,

I have been on the reduced dose for over a year now and am feeling much better in terms of side effects. I still deal with cuticle and nail peeling/sores, a bit of ankle swelling and increased BP. For the most part the joint aches and pains have subsided. My WBC was half of what yours is now when my doctor made the dose reduction though. We monitored the labs very closely when first making the switch, having a CBC every month with instructions to go back to 2 capsules per day if I saw a substantial increase. My labs are now all within normal limits and nodes are all back to unremarkable size. It is worth asking your doctor about the dose reduction. Hope you get some relief.

Take care~ Kim

I also had sore tongue and sores (not fever blisters, etc). Doc put me on monthly B12 shots and help mucho. It took 2-3 months to really tell the difference. You could also look into immunoglobulin infusions.

Hi Matt

Like most of us, I'm NOT a doctor, but I have had experience with Imbruvica.

I started on it at full strength (420), but after experiencing many side-effects, my MD lowered the dosage after only 1-2 months. I then continued, experiencing substantially fewer side-effects for about a year, with some short breaks (no Imb. at all, for 6-10 days) while I had surgery (cataracts, septic arthritis), and a severe cold. All this time, my CBC #'s continued to improve, quite nicely.

Then, after 13 months (on the reduced dosage), I got Afib, which led to heart valve problems, & caused me to stop taking Imbruvica completely. For about two months, my CBC #'s stayed where they were, before they started spiking up. Fortunately, I was able to then start on a new drug (Calquence), but the notable things to me are that a) the reduced dosage never caused me a CLL blood # problem, but did reduce the side-effects, b) I was fine after temporarily stopping the drug several times for short periods, c) even the longer (2-3 month) break was ok (CLL #-wise) after I finally stopped the drug completely, & d) the side-effects (Afib, etc) eventually caught-up with me, even at the reduced dosage.

Conclusion: Again, I'm not a doctor, but in my experience, short breaks from Imb. were not a problem, but always be watchful of a serious side-effect, like Afib. And, I've always wondered, "should I perhaps, have reduced the dosage even more"?

Good luck, and enjoy your cruise!

Gary

Hello Matt -

"My" opinion and I am not a doctor. Doctors follow a script and they stick to it. But twice I have been really sick and I stopped taking Imbruvica for several weeks until I felt better. One incidence I had pneumonia/staph infection that put me in the hospital for 10 days. This past December the Imbruvica brought on a recurrence of Hep B, I was really sick because my liver enzymes were 100 times as high as normal. In both cases I was off of Imburvica for about 6 weeks.

I have a lymph node in back of my right ear that is a harbinger of where my NHL is. When I am on Imbruvica that node is barely there. As the Imbruvica wore off little by little that lymph node began to swell and at about 6 weeks it ached and my neck was really sore. But within a few days of starting back on the Imbruvica the swelling had started to go down. "I" made the decision in both cases to stop the Imbruvica. I doubt that the doctor would have made the same decision. But I was so sick that I just wanted to stop ALL medications until they figured out what was going on.

As for whatever to going on in your mouth, I was blessed with diarrhea 3-4 days a week. One thing that you can do for yourself is to monitor "everything" that you eat or drink. Something that you doing may be contributing to the mouth situation. For me taking Imbruvica after dinner works the best. The food helps adsorb the medication. But things like drinking coffee/soda/ beer, vitamins that you are taking, the time of day that you eat - how much water you drink all feed into how your body is reacting. Acidic foods like tomatoes, orange juice, pizza can also contribute. I doubt that any doctor is going to approve of you going off of Imbruvica because you want to go on a trip. Get a 3 x 5 card and keep track of when and what you are eating and drinking each day. Try taking the Imbruvica at a different time of the day. You may find that "you" may find some ways to help your sore mouth. Take care from Pa.

Before my tooth extraction I was off imbruvica w/o problem. I used to have sore mouth/ tongue, I consulted infections disease specialist , he told me u have herpes simplex Rx antiviral pills course , it worked , then started on ivig, no more sore mouth , same time I irrigate my moth often with sea salt, it help.

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