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CLL Support Association
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Imbruvica

My husband has been on Imbruvica for 29 days and had appointment with Oncologist today. His WBC has gone from 28,000 to 90,000 today. His Oncologist was not too concerned about the rapid increase in WBC. He said it was not uncommon to have a rapid rise when starting Imbruvica. He wants to recheck lab next week. He said if it continued to rise he would have to give him some medication to bring the WBC down?He also ordered Ultram for the wrist and joint pain that has gotten pretty severe this past week.

Thanks for your thoughts.

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Your husband's oncologist is thankfully aware that WBC counts can initially jump quite high after starting on Ibrutinib. This happens about 70% of the time. It's because Ibrutinib disrupts the CLL cell adhesion that normally keeps CLL cells protectively ensconced in lymph nodes. Your husband may notice his lymph nodes shrinking if he has any obvious ones. The CLL cells are far more vulnerable in the bloodstream and will soon die. (Some oncologists less familiar with how Ibrutinib works incorrectly stopped treatment when it was a fairly new drug!)

I suggest you contact your husband's oncologist to verify what was said about bringing down his WBC, as you seem unsure of what he meant. I suspect he may have been thinking of prescribing Allopurinol. If CLL cell die off is too rapid, there is a risk of Tumor Lysis Syndrome and Allopurinol is used to guard against that happening. It is particularly important that your husband drinks plenty of water to help his kidneys deal with the effects of all those CLL cells dying.

I hope the wrist pain resolves soon; Ibrutinib side effects generally do reduce over time.

Neil

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Thank you so much Neil. You insight is so helpful.

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Yes thats the drug working with the CLL cells being kick out of the bone marrow. It will soon drop all the way back down to normal. Wrist / joint pains are very transitory. Your doc should be monitoring weekly on bloods for the first month. Also your husbands stamina levels should have started to improve - time to get out the bicycle and go for some long rides

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For some it takes some time for the ALC (part of the WBC and a more accurate measure than the WBC) to go down. If everything else looks good give the Ibrutinib time.

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Thank you for your reply.

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Hi. Just to advise you that Ibrutinib does not penetrate your bone marrow.

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While Imbruvica (ibrutinib) is very slow at clearing bone marrow, it's there...

~chris

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Hi I agree with everyone who has replied. I am on Ibrutinib and my wbc went up initially which is a good sign the drug is working. Now it has gone down and return ing to normal 3 months in.

Good luck to you both

Ann

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Thank you Ann.

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Agree with all of the above, and my wrist pain bothers me a lot, but it is transitory and it is in my left hand and I am right handed. Please be aware that not everyone sees improved stamina and lessening of fatigue right away. I have been on Ibrutinib since August and it is only in the past 6 weeks that I am starting to feel like my Pre CLL self. Everyone’s CLL is different. Hope he continues to do well.

BeckyL USA

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Thank you Becky.

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Good news Becky.x

Sue

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I had to add Imbruvica to my organic holistic approach to this in feb of this year. I decided not to freak when I saw the numbers because I had been forwarned by my team of drs at Duke Cancer Center in North Carolina.They had made quite clear that the very big rise would happen, then everyone being a bit different, it would then begin to come down.I've talked to many ppl and this has been the phenomenon that they have experienced. That said, we were all blown away when after 2 weeks, my numbers never rose but instead fell from 326,000 to 124,000 in 2 weeks, then after another 4 weeks was down another 40,000 and is now only 14,000 out of normal range with all but 3 blood components already back into normal ranges and those 3 are getting closer to normal range each check .My experience is not the norm.So, hold on to your faith and know that you're going to see it come down,everyones time frame just seems to vary greatly but with many pple having wonderful results, so hang in and know that you are cared for . I lift the ppl on this site up daily for healing and calm and strength for all of us to continue to do everything we can to aid our bodies in healing.Blessings. :-)

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Thank you Cfighter. It is so reassuring to hear everyone’s experience with Imbruvica. Helps us to get ahead of the curve and not to get apprehensive about the changes in the lab work.

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I also use fractionated coconut oil with essential oils ( frankincense,birch,clove,hylechrysum,peppermint) in a roll on applicator for muscle spasms/cramping, joint pain and musclular pain and soreness,It is hugly beneficial.I can do a 90 minute massage on someone and feel like I'm broken, use the oil ,and after resting, the pain has lifted away. If you choose to use it there will be directions for ratios on a card that comes with the product from the co. that I've used for years.I will say that I always use it strong but not "neat" because the carrier oil helps with the absorption. :-)

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This sounds interesting. I am a believer in coconut oil.

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