Worried that Ibrutinib is working?

[kathymac52]

My husband has been on Ibrutinib for 2 months....and his neutrophils dropped from 2.3 to 1.3 and now developed a mouth sore. His lymphocytes are sky high at 24,000 but lymph nodes are small. His WBC has risen to 25,000 and platelets and RBC have fallen slightly from the normal range....no significant side effects. Just concerned about his canker sore...which indicated low neutophils in the past....blood test again in 2 weeks. My question is: with 11q deletion, should we be more patient with this drug?? Is there success with this targeted therapy after he has failed with the BR chemo therapy? Also, lab report stated: variant lymph : 90 which is crazy high when it should be 0%. Segs are at 5% and mono at 1%. I am worried

[baq724]

I can’t speak to the neuts dropping and the mouth sore, but many patients on IB experience a spike in ALC as all of the CLL cells are forced out of the nodes and spleen. The number should begin dropping after a couple months...perhaps sooner. In this case, the higher number is a positive...it means it’s working. The downward trend will hopefully begin soon!

[kathymac52 in reply to baq724]

Thanks so much for the support!

[AussieNeil Partner Administrator]

With CLL, always ignore percentages of white blood cell types and look at absolute counts. Its the numbers of cells that matter in fighting infections, not the percentages (which are distorted by the high lymphocyte count). A neutrophil (segs) count of between 1.0 and 1.5 only comes with a minimal risk of infection; it's when it drops below 1.0 that the risk becomes moderate and it's severe below 0.5. Your husband is also making monocytes, which is good. Healthy people get mouth sores, though understandably your husband will be more susceptible to these painful sores.

BR works in an entirely different manner to Ibrutinib, so his experience with BR is not relevant.

You mentioned your husband had a lymphocyte count of under 5(thousand) 2 months ago and 18.2(thousand) a month ago, so a further rise to 24(thousand) shouldn't be of concern. Ibrutinib works by flushing out CLL cells from the nodes into the blood stream, where they are vulnerable and die. CLL cells are quite small, so they don't interfere with circulation. A few of us have counts in the 200+ range and are still in watch and wait.

Some taking Ibrutinib don't see their lymphocyte counts drop into the normal range or <50% of baseline within 12 months of treatment. The Blood 2014 paper looking at these patients by J Woyach et al, Prolonged lymphocytosis during ibrutinib therapy is associated with distinct molecular characteristics and does not indicate a suboptimal response to therapy noted that "We see that prolonged lymphocytosis is relatively common following ibrutinib, and although there is some biochemical evidence of activation of these cells, the persistence of lymphocytosis ultimately does not appear to predict a group of patients likely to relapse."

Take some time to read the responses to your previous posts healthunlocked.com/user/kat... for reassurance.

Neil

[kathymac52 in reply to AussieNeil]

Thanks Neil, I will. I appreciate your research and knowledge so much. We didn't get to see our doctor at this last blood draw and appointment, so I felt uncertain. He was on vacation and his "fill in" who was not a hematologist had retired five years ago, and was not familiar with Ibrutinib. Being on this drug less than 2 months is chartering unfamiliar waters.

[FlaKeys]

Good Afternoon! I hope my experience can lend some comfort. Just wanted to let you know that my husband, also 11Q, has been on Ibrutinib for 2 and 1/2 years now. His ALC rose significantly after beginning the Ibrutinub. It took 2 years for his counts to return to normal. Lots of patience....which can be very difficult at times!!!!

[kathymac52 in reply to FlaKeys]

Thank you so much......I need to hear some positive news.

[Cllcanada Top Poster CURE Hero]

I would have your GP or a dentist look at the mouth sores, to be certain what it is, might be fungal, bacterial or viral reactivation...

~chris

[kathymac52 in reply to Cllcanada]

Will do.....you are always a wealth of information! Much appreciated.

[LynnB1947]

At 3 months on ibrutinib my neutrophils were at 0.6. I had injections of neulasta for 3 days to boost bone marrow output and blood counts began improving. At 4 years on ibrutinib, counts are normal and lymph nodes are small. Hang in there. (11q, unmutated, SLL, on IBR since April 2014)

LynmB

[starsafta]

Mouth sores are common with Ibrutinib. I had a flurry of them at the beginning. I started putting two drops of Organic Oil of Oregano on my toothpaste twice a day. The sores healed and have not returned, except for once when I decided to try not using the oil for a couple of days. I am vigilant about this. Still working after 22 months. Good luck!

[starsafta]

And by the way, my platelets have been living in the 117-123 range. While bleeding takes longer to stop, it eventually does. I'm really really careful when cooking and gardening these days.

I now carry an arsenal of products designed to stop bleeding, including a powder and dissolvable gauze. My new favorite is a teabag of black tea leaves. If you wet the bag and place it on the bleeding area, held with compression, the tannins in the leaves are released, promoting coagulation. Ain't Nature grand?

I also warn doctors and dentists before procedures, so they are extra careful and prepared. When I recently told a dermatologist there would be a lot of blood when she prepared to take a 2mm biopsy of an infection on my finger, she was prepared, yet felt it would be fine. As soon as the biopsy was taken, blood began pooling up. "Oh," she said, "that's a lot of blood." She quickly took a stitch, which she ordinarily wouldn't have to do for this size biopsy on a "normal" person, and the bleeding immediately stopped.

Vigilance is a good thing!

[W00dfin]

My platelets had dropped to 70 one year ago when my oncologist started Ibrutinib. They have gradually increased to 120. I’ll be satisfied with 130 as that was my baseline during remission. Fortunately all my other blood counts are in normal range. Like another responder, I have to be vigilant with prompt treatment of skin injuries. I use a prescription antibiotic ointment Mupirocin. I also use a prescription “magic mouthwash” for mouth sores.

[kathymac52 in reply to W00dfin]

Thank you so much , will investigate the Mupirocin....we already have the magic mouthwash...