Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need treatment again, but still a shock, particularly as I feel well. Ran my first ever London marathon this Year! Will be running Great North Run next month.
my brief CLL history:
Dx'd age 39, w and wait, eventual CR , lasted around 5 years, felt well most of this time, kept rnning, kept raising money for charity...not surprising to say blood cancer charity! Altogether living with this 'thing' for nearly 22 years. Oops, just gave away my age.
Above is potted version of a very long story. Have p53 deletion. So now I have 3 options for treatment
1. Clinical trial Phase 3 randomised, Zanubrutinib vs Ibrutinib
2. Rituximab and Venetoclax
3. Rituximab alone
I narrowed it to option 1 or 2. Specialist said all these drugs show great promise, but could not say which is best, partly this is understandable as they are still learning, but it does not help me.
My understanding is the side affects are less severe than the chemo I had all those years ago...here is hoping, the list of side affects looks frightening but I suppose almost any drug has potential side affects.
THE QUESTION BIT ✅
So my question is which should i go for. I know this is a stupid question but it is a difficult decision, and i really have no clue what i should do. I will be discussing it again with specialists on Thursday
but welcome any comments forum people undergoing same or similar treatments, or anyone with knowledge of these
After a long period of relative stable counts, the fact that i am told that i should not delay treatment too long is definitely a shock even if I have been continuously told it was not ' if ' but 'when' I would need treatment.
thanks . I know some of you for sure, i was on one of the first lists, via Acor, a US based CLL list, but generally tried to put CLL out of my mind.
the rambling bit: 🤡
Meantime I will keep running, keep training as long as i can, it has helped me tremendously. and i hope i even have more stamina than i did for my first treatment around 15 years ago. Hoping to do my 2nd marathon in October. Nothing will stop me, excepting physical impossibility or if I lose my marbles (just kidding)
Clearly I can no longer ignore this! CLL, maybe i will have a little pity party, but it will not last long. I remain positive and determined to beat this thing somehow some way ,.. the only thing that scares me is nausea, Is that not funny in a kind of sick way 😀
Another 'sick' joke, I think some colleagues at work think I am using all these recent hospital visits as an excuse to get away from the office. Maybe they are correct!
thanks a lot in advance for any replies.