As some of you will know, because you have kindly supported and responded to me and my queries........ more............. my husband has now overcome shingles,(except for one 6mm lesion which has remained intact for over two weeks and a biopsy will be carried out next week). he will re-start ibrutinib tomorrow but at a lower dose, (two tbs per day instead of 3). he will take Aciclovir 400 mg x 2 per day day.(having just completed 5 per day for 7 days) GCSF twice per week.(having already completed 1 per day for 7 days raising his neutrophils from 0.2 to 3.6). His next ivig will be next Monday (as per usual every 28 days).
he had a fbc today and his platelets are 67.... we have never been involved with blood figures, thinking there is nothing we can do to alter them.. (ostrich attitude) ..... he has felt totally unwell for the last 7-10 days ( shingles also during this time), he is extremely lethargic, withdrawn, he looks as though he is on the brink of falling over at any time. even the hospital staff commented on his demise today.He doesn't complain....... perhaps he should see the medics without my being present..... he might then tell them how it really is. I find this a very difficult place to be....... a totally unknown drug here in the U.K. There is something obviously wrong with my husband and I do not know what the problem is.I should also point out though...... he takes nebulised colomycin twice per day for haemophylus influenza following lung surgery to remove clots, the influenza is in lung scar tissue, so he has a permanent cough which he finds very debilitating....... other than that............. TIZ a wonderful world and we are very grateful to all the people who help and support us, including our new pals at Healthunlocked.
1st week on venetoclax - WOW, not what we expected... Part 2
Ibrutinib & neuropathy?
High Altitude and CLL: Risk?
Husband nearing completion of O+V/should there be a test for UMRD?
Fatigue, Headaches, Fevers, Numbness Without Obvious Cause? 
