Ibrutinib..........

[lartington]

Hi my husband has been on Ibrutinib for just 10 days, he developed shingles (just a coincidence) but his wbc shot up from 80 to 120 in ten days, he has been taken off Ibrutinib temporarily , he is on antibiotic for a shingle infection and an anti-viral treatment his neutrophils are 0.2 he is not feeling good at all. back to the hospital again tomorrow. anybody else along these lines??

[Ernest2]

Everyone please correct me:

From what I've read before here on HU I think the increase in WBC is to be expected as it flushes the nasty stuff out of your bone marrow and into your bloodstream where the WBC test is done.

For the Shingles we also have previous posts on lots of many of the issues on HU. If you can, try a Google search for say "shingles cll healthunlocked". (You don't need the quotation marks)

Could I also ask where you are being treated, and is the Ibrutinib part of a clinical trial, and is it being taken in combination with anything else, like a monoclonal antibody e.g. Rituximab or other (note "mab" at the end of that name)

Also is this the first treatment for CLL or have you had other therapy before?

Sorry to be brief.

Ernest.

[lartington in reply to Ernest2]

My husband is on a 'named patient ' entry for Ibrutinib at Harrogate hospital in north Yorkshire, U.K. he was selected because he is 74, p17 deletion, had prednisilone previously and developed osteoporosis - four collapsed vertebrae, ivig every 28 days, frequent infections, frequent skin cancers, surgery for various infections 12 times in the last 8 years. pulmonary hypertension resulting in pulmonary embolism being removed from lungs 7 years ago. Harrogate General hospital has a new cancer day unit, Sir Robert Ogden/MacMillan unit, it is superb, the staff are so caring, take a look on google.

Within the last year we moved house to be closer to better hospitals with more focussed facilities, we feel the move was very worthwhile. We are both extremely grateful that he has been given the opportunity to try this new drug, as you know chemo is not an option with p17 deletion.

[Cllcanada Top Poster CURE Hero in reply to Ernest2]

Actually it is the B lymphocytes from the nodes and spleen that are flushed to the peripheral blood initially, the marrow takes some time to clear...

This is well document on the ibrutinib drug label...

accessdata.fda.gov/drugsatf...

Shingles is a reactivation of the chickenpox virus, that lives in us for life, as do other Herpes types. Antivirals do not prevent reactivation, but they do greatly limit the cells damaged by the Zoster... and reduces Postherpatic neuralgia or nerve damage...

chd

[bkoffman CLL CURE Hero]

The high ALC (most of the WBC ) is not the issue. That is expected and of no concern with ibrutinib. The issue is the low ANC and can be helped with growth factor injections. Some bad shingle cases need IV antivirals. Talk to your docs about long term zoster prophylaxis when the acute episode is over.

[lartington in reply to bkoffman]

thankyou for your comments, my husband has been given prophylaxis zoster to commence once the last blister is dry. We are told this will be given long-term.

I feel that we are now fully aware of current events, treatment and the care given from the hospital is very carefully considered, visits for bloods are twice per week and we have the emergency number for admission if necessary. We did have to use it a couple of months ago, it was excellent, within 30 mins of being admitted full bloods had been taken and intravenous antibiotic set in place.

If you have to have cll, I feel it is a good place to be. hw

[MartyR]

Lartington,

I agree with Ernie..."Initial treatment with ibrutinib elevates levels of white blood cells, including CLL cells, which at first appeared to be a sign of disease progression. However, at the same time, patients experienced sharp shrinkage in their lymph nodes, where CLL cells accumulate." - Dr O'Brian.

Last July I was on a "similar" drug Idelaslib and in the first month my WBC tripled and my nodes significantly reduced - but my Consultant was fully aware of these effects and reassured me.

Obviously I do not l know your particular medical situation - but like Ernie - this was a positive sign.

Regards,

Marty

[AussieNeil Partner Administrator]

Ernest is quite correct about patients experiencing a significant initial jump in WBC (to be pedantic, it's the ALC) shortly after starting Ibrutinib. That's because Ibrutinib interferes with the adhesion mechanism that enables these cells to stay safely tucked away in the lymph nodes, spleen, bone marrow, etc. As ibrutinib flushes out the cancerous B cells into the blood stream where they are more vulnerable and die off more rapidly, the ALC will eventually peak then fall below the level at which treatment started and keep falling . Researchers weren't expecting this temporary ALC increase to happen and were surprised when it was observed in trial patients. Some less well informed specialists prescribing Ibrutinib also don't expect this and can get concerned - after all leukaemia treatment is supposed to reduce the ALC, not increase it! (If you remember that CLL is a lymphoma as well as a leukaemia and that most of the tumour load is in the lymphatic system, this occurrence makes more sense.)

I'm not sure why the Ibrutinib treatment was halted and it would help if your husband's specialist explained why.

Shingles is a viral infection; hence the need for an antiviral treatment. Antibiotics won't do anything to help a shingles infection, but if the blisters became infected with a bacterial infection, then an antibiotic makes sense.

Perhaps your husband's specialist is concerned about the grade 4 neutropenia and considers temporarily going off Ibrutinib a better option than giving him a shot of a G-CSF drug to boost them? Again, it would be reassuring if your husband's specialist explained why and what will be the trigger to recommence the Ibrutinib. Answering the other questions Ernest has raised would also help you gain more informed replies .

Neil

PS You can limit Google searches to our community on the HealthUnlocked site with the search phrase "site:healthunlocked.com cllsupport <search keywords>".

[lartington in reply to AussieNeil]

thankyou so much for your detailed reply. we have been to the hospital today for another blood check....my husband's wbc has dropped to 86 and neutrophils have risen to 1.56 he has been taking G-CSF shots for 4 days. This is very re-assuring, given all the replies you have all sent me. The reason ibrutinib was stopped was to watch the development of shingles, when there are no new blisters it will re-start.he is taking Zovirax 800mg x 5 daily. The antibiotic is because one lesion is infected. It has been seen by a dermatologist and if no improvement in 14 days a biopsy will be carried out.

Unfortunately, he has haemophyllus influenza for which he has nebulised colomycin twice daily, he currently has an infection in his lungs, so that, the shingles etc., are probably all resulting in him feeling most unwell, very fragile, frail and unsteady. no temp, but a little pep talk at the hospital today, and we hope that by Monday next week, the next blood test/consultation he might be in a position to re-start Ibrutinib.

I am so very grateful to all members who have taken the trouble to comment, very much appreciated. thankyou

[AussieNeil Partner Administrator in reply to lartington]

Thanks for clarifying your husband's situation; it all makes much more sense now. You've also gathered some reassurance that he is being looked after well. I can well understand him feeling very fragile at the moment and join in hoping with you that he'll be on the mend shortly and able to recommence Ibrutinib. Please let us all know how your husband goes.

Neil

[Ernest2 in reply to lartington]

Many thanks for all the informatiion, and to everyone for their replies.

You sound to be in a great place in Harrogate.

Hope things go well, and please keep posting as you are able.

Best Regards,

Ernest.

[MaudMarie]

It's not surprising that your husband is not feeling good, shingles alone is a debilitating illness without the complications of CLL and treatment. As well as monitoring the neutrophil count, his doctor should also be looking at the Immunoglobulin levels. Shingles viral reactivation is little understood but being immunocompromised adds to the likelihood of its occurrence. I hope that his medics continue to take his condition seriously.

Best wishes

[lartington]

thankyou for your reply. my husband has ivig infusions every 28 days and has had for nearly 4 years. many thanks hw