I am 66 year old male Royal Marsden patient UK. Treatment has been advised (which has come as a big shock to me as it has never mentioned before) mostly because I have a really huge spleen. Apparently extending over to the right side of my abdomen and well below my navel on the left side. This was on physical examination. Had CT yesterday and FISH test (and TP 53 Test) on Monday. I know am IVGH mutated. My blood counts aren't that bad-eg HGB 11.5 WBC 102 with doubling time over a year. Have actually asked for a second opinion from UCLH
What is particularly getting me down is that I was diagnosed with type 2 Diabetes 2 years ago. This was quite atypical type 2 (it mimicked type 1) as it was very sudden onset with dramatic symptoms, nor was I overweight. It is controlled now with Metformin. However the bad news is that there are research articles on the internet which suggest that Diabetes dramatically decreases life expectancy if it is a co-morbidity with CLL.
I told hospital (Royal Marsden) I wasn't keen on FCR, so was offered a choice of (1) Obinutuzumab plus Venetoclax or (2) Acalabrutinib. I was also given a leaflet on Rituxan but I am not sure how this would fit in (could it be combined with Venetoclax as a first-line treatment in the UK?)
Have read quite a lot of people's experiences on this forum with regard to the above drugs, and also the stats for them, which are very impressive. The treatment landscape seems to have changed so much for the better over the last 12 months- a huge plus. However, I am very nervous of Obinutuzumab, particularly because of my Diabetes, because it comes with a lot of side effects which can be severe (eg infections, reaction to first infusion) .My first choice at moment would probably be Acalabutinib, as it seems relatively gentle, but still effective, but Venetoclax plus Rituxan would be an attractive option (if it was actually available as a first-line treatment in UK, which I doubt).
The consultant said if "I was his father" he would advise OB. plus Venetoclax. as he was concerned about long-term side effects of Acalabrutinib. I think I am willing to risk these as i don't have heart issues.
As regards the issue of treatment sequencing. As far as I can see the stats. do not really help on this at least as yet. It seems that all treatments given second-line are likely to be less effective than when given first-line.
I was advised that I would initially need in-patient treatment whichever treatment I chose because of concern about Tumour Lysis Syndrome.
Any thoughts on any of the above? Sorry for its length.!