Having just joined this community, I thought I would tell you about my experiences of CLL so far. I was diagnosed just under 4 years ago (Jan 09) via a routine blood test. My GP broke the news having done 3 blood tests in as many weeks and all 3 came back with the same result! Within 2 weeks of being told, I had an appointment to see an Haematologist. Whilst waiting for the dreaded day to arrive all sorts of things were going through my mind (and my wife's) and I remember not eating or sleeping a great deal for fear of the unknown.
The appointed day arrived, and my wife and I headed off to the hospital. We were greeted by the receptionist and was informed that I need to supply more blood before I was to see the consultant. What seemed like hours passed before my name was called and we were summonsed to a side office. The consultant asked if I knew why I'd been asked to attend the clinic? I explained what my GP had told me to which he made no comment. He started off my saying something on the lines of:- "If we all had to have a cancer then this is the one to have". He then continued to explain (in full) what my problem was and said that it was fairly low key so didn't need any treatment at that time. This was a huge relief for both myself and my wife. Months went by and my blood count was also increasing but not by any big leaps. I would say 15-18 months passed when I started to notice large lumps in my neck so it was on the cards for my to talk about at my next consultation bearing in mind that I was only being seen every 3-6 months.
At the appointment I was examined and was told that these lumps were my lymph nodes working overtime and to be sure that nothing else was going on I had to have a MRI and CT Scan. The nodes were measured higher thatn what they should have been particularly my cervical gland. The decision was, that I was to have that removed so that was done within a couple of weeks of seeing the surgeon. I also had in the same period a couple of Bone Marrow Biopsy's which I have to say were extremely painful (but that's another story if anyone wants to know about what to expect).
Having had the "mothership" gland removed things levelled off for a while and then in the Spring of 2011 these lumps started to get bigger along with my blood count that was getting higher. In the summer of 2011 (Sep) whilst on holiday I came out with a very large bruise (about the size of the palm of my hand) on my left leg and my neck was swollen. Luckily, I had my check up two weeks after returning from holiday so I hung on! At that appointment I was informed that my platelets had dropped to 31 (should be anything between 150-400) and my WBC had shot up into the 40's. I was then diagnosed with ITP (Idiopathic thrombocytopenic purpura) which, I was told was not connected with the CLL - "It's just another problem you have"
At the start on 2012 it was decided that I needed chemotherapy treatment for the CLL as it was looking at racing away with itself. I was given 6 cycles of FCR (Fludarabine, Cyclophosphamide and Rituximab) although the cycles were every 4 weeks it last lasted 8 months due to infections that I managed to get during the programme. I'm happy to go into more details about the chemotherapy if anyone asks. 8 months later (Oct12) I am happy to report that following another painful Bone Marrow Biopsy I am now in Haematological Remission.
It's been a very long journey with a lot of sad times for both me, my wife and the family. The ITP still continues but things are on the up 
I'll keep you posted as to what happens from now on and if you have any questions then please ask.
Continuing Story of CLL Journey
Ibrutinib / Venetoclax Journey
Just joined the group so here we go with my question
