Hi all
For those that have followed my posts over the last year or so will know I have have had a bit of a rough time. But now i would like to tell you a little more positive news. For those who have not read my posts i will repeat somethings to bring you up to speed. As well as CLL, like many of you im sure, i have a number of other ailments. The most significant of which is psoriatic arthritis. I had been treated very sucessfully for10 years or more with subcutaneaous methatrexate. When i went on ibrutinib, this was initially stopped but reintroduced when i responded to that drug. Unfortunatly, i reacted quiet badly and the white cell counts went from the mid 20s to the early 90s in a couple of months. My consultants conferred and stopped the methatrexare. Two weeks later the WBCs went down to the mid 80s. I went back again two weeks later and the WBCs bounced to 100 giving cause for concern the ibrutinib was not working. My symptoms were severe fatigue, feeling very poorly, blurred vision and violent headaches. My heamatologist made a plan of action being, see an eye specialist and brain scan as ibrutinib can cause bleeding, then bone marrow biopsy and a CT scan.
Now the good news. The opthamologist checked the back of my eyes and confirmed there was NO bleed. She believed my tear ducts were not working properly causing dry eye, then sudden tears causing the blurry vision. Two sets of medications appear to have cleared the vision problem. Sorting that has made the headaches less severe. My bone marrow results shows a decrease in the CLL cells reduced to 30% from 50%. Yesterday i got the CT results and bingo. My spleen has reduced to within normal range some 6 mm reduction. And the lymph nodes also have also reduced to within 2 mm of normal. One underarm node has shrunk by almost 9 mm.
The obvious conclusion is the ibrutinib is still very effective. At the previous consult my heamtologist gave me prednisone to both tackle fatigue and help with the arthritis. Again the fatigue is greatly reduced and im able to stay awake all day (result again) however its not done much for the arthritis. I feel much better than i was two weeks ago but have a way to go yet, but for me this is very positive.
The outstanding thing is the MRI Scan on the brain which is happening this Friday evening and hoping its a formality.
We are all different and both respond and handle things differently. I was a fireman for many years seeing a lot of the bad things life has to offer and my philosphy is to roll with the punches and then stand up and get ready for the next one. I am lucky to be surrounded by loving family and friends. And again i write this post to those who worry that sometimes when you are at a very low ebb, things might not, as in this case, be as bad as they seem. Stay well.
Kind regards to you all Mick
Ibrutinib
Ibrutinib and Cll 
Ibrutinib and fatigue
