Shingles again?

My mother had shingles once few years(~5) ago. She is 82 yo and was diagnosed with CLL there are 6 years. Was on Rituxan and chlorambucil combination treatment already twice (each treatment with few cycles , treatments 3 years apart) and now was prescribed and started taking ibrutinib 6 weeks ago. Her immunity is very low. Today she started to complain about pain in the same place she had shingles 5 years ago. She is taking only ibrutinib (420 mg/day), no antiviral . Recovering from pneumonia that collapsed the middle lung lobe on the right lung a couple of weeks ago. WBC was around 90000 6 weeks ago and went up to 200000 one week ago(and I think and hope this is expected). RBC : Hematocrit 29%, Hemoglobin 8.7, platlets 95000 . Should we suspect shingles are coming back? How to confirm? Any preventive measure?

13 Replies

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  • Even if you just suspect shingles get to a doctor ASAP.

    This is not a time to wait. if it is a re-activation of shingles anti-virals need to be started quickly!

    Hope things get sorted quickly.

    Best wishes.

    Sue

    Just noticed that you've only just joined so welcome to the forum.

  • I agree with Sue, get your mother to a doctor so she can be assessed for shingles and started on an antiviral ASAP if the shingles has returned.

    Your mum's WBC increase with Ibrutinib is quite normal - it can take some months to get down below the starting WBC.

  • Thanks for your answer

  • Minutes do matter......antiviral need to be started if this is a re-emergence of shingles, be sure your Doc's reception/nurse appreciates the urgency.

    Haemoglobin being under 10 may make Mum breathless usually blood transfusions are scheduled, has this been discussed ?

    Wishing it's not the dreaded shingles and that your Mum's condition soon improves.

    Best wishes

    Bubnjay1

  • I think they only start transfusion here with hemoglobulin below 8. Thanks for the answer!

  • You may want to ask your doctor about staying on a maintenance dose of an antiviral. I was first diagnosed with CLL due to a shingles and chicken pox episode and have remained on a maintenance dose of an antiviral, acyclovir, during chemo and since.

  • Thank you very much for your answer!

  • Good news for my mom. No shingles and new blood test results today (after around 8 weeks on ibrutinib) shows now Hemoglobin 11.1, hematocrit 36, wbc down from 200000+ two weeks ago to 97000, platlets 85000. All other results close to or normal, except for uric acid that is 9.1, but down from 9.5 two weeks ago. Still a long way to go but at least the direction looks good. Is there anything in special I should track?

  • Great news!

    You are tracking most of the important blood counts during treatment. Rather than monitoring the WBC, look specifically at the lymphocytes (should decrease with treatment as you are observing) and neutrophils (may decrease as a side effect, but should stay above 1(,000) for safety from infections).

    Spreadsheet templates available for tracking blood counts covered here: healthunlocked.com/cllsuppo...

    Longer term, your mom's immunoglobulin (IgA, IgG and IgM) should be checked as these need to stay at good levels to maintain immunity and both drop over time with CLL and with treatment (though some on Ibrutinib see them improve at least temporarily).

    Neil

  • Thank you very much for you answer! Her immunoglobulin levels are in fact very low. Should they improve with the treatment?

  • Her latest wbc summary is:

    bands:2 % 1.950/mm3

    neutrophils:4 % 3.900/mm3

    lymphocytes:93 % 90.675/mm3

    monocytes:1 % 975/mm3

    Neutrophils seem no to be very low at this point.

  • If you check out the spreadsheets, you'll see that these neutrophil results are very good. With CLL, we need to entirely ignore percentages, because our high lymphocyte count (91 compared to a normal range of 1.5 to 3.5 for your mother) totally dominates the white blood cells on a percentage basis. What's important is that the absolute numbers of neutrophils and other white blood cells like monocytes (and bands are immature neutrophils), remain high enough to counter infections. Adding your mother's bands and neutrophils together gives a total neutrophil count of 1.95 + 3.9 or ~5.9, which is excellent and far above the minimum normal of around 1.5 to 2 depending on the testing laboratory. Maximum normal neutrophil counts are around 7.5 to 7.8.

    Immunoglobulin levels will likely not lift or not lift permanently, because all CLL treatments kill good B-lymphocytes as well as CLL cells and immunoglobulins are made by plasma cells, which are matured B-lymphocytes. If your mother's IgG falls below around 4/400 and she gets serious enough infections, she may be prescribed IVIG infusions to boost her IgG immunoglobulins. Quite a few of us have these regularly.

    Neil

  • Your answer was very helpful. Thank you again!

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