My husband is currently 'off Ibrutinib' for 14 days due to surgery next Wednesday, he is acutely tired, and already asleep....in bed.We thought as an experiment during this time we would monitor daily his fatigue levels. At the end of the 14 day period, if it has improved we will ask the haematologist if he can re-start on 140mg and see how that goes!! His bloods this week were all very good, we don;t follow bloods in detail as a lot of people do, we have too much other 'stuff' to deal with to concentrate. but we are always interested in neutrophils as my husband was neutrapaenic for several years, now with the (name escapes me) injection his count this week was 4.6..... yippee. He also takes Aciclover daily as he had shingles twice since starting Ibrutinib.
He had a biopsy in December for a mass in his neck, we have only just finally had the results from that this week. We have been on tender hooks for 4.5 months, was it tuberculosis or was it metastatic progression from surgery in May last year on his head for squarmous cell carsenoma....... eventually much discussion, five consultants from different disciplines we have now been informed, the mass has GONE (c.t. scan in March) the common thought from the medics is that it might be thanks to Ibrutinib, but who knows??
Meanwhile, he is a very weary, sad man ...... maybe Ibrutinib simply isn't for him, who knows??
ps. surgery this coming week is for a hernia repair caused by excessive coughing, he had surgery 8 years ago at Papworth for thromboendactorectomy (removal of clots from lungs) he has a vinacarva filter fitted to stop further clots moving into his lungs. coughing is induced twice a day prior to nebulised colomycin to keep haemophilus influenza at bay.............
the sun is shining, we have a blackbird singing out his little heart looking for a lady!! best wishes to all hw