Just been to meet the treatment nurse, and collect the paperwork to apply for the FLAIR (CLL10) trial, which I’m told is now open.
Hard to get my head around that 4 years of Watch and Wait may be coming to a close.
My ALC was about 227 at the start of this month and yet I feel as fit as any time in the last few years (night time leg cramps etc. aside).
People that know me are probably confused by how well I look at the end of a great summer, and I guess many that don’t ask, wrongly assume that I’m now already on treatment.
Starting treatment in my case is driven by splenomegaly. There I’m probably lucky to have a very long back and short arms and legs, making plenty of room for the spleen.
Now I’m really writing to say thank you for all your posts, and apologies for not writing much in the last few months.
I keep looking around and seeing jobs that need doing, and thinking I might not be able to do that in a few weeks/months’ time, so best get on with it now.
It does say “get fit for treatment” on the tin.
Many thanks,
Ernest
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Ernest2
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Were you given any options like Paula or was just FLAIR recommended? If you do enter this trial, I'm sure that your progress will be followed with considerable interest by our community.
I'm intrigued by the “get fit for treatment” comment; do they say how?
By the way, I love the colours in your canna lilys - are they in your garden?
I haven't discussed any other options than FLAIR and I think (in my late 40's) it is the sensible choice in my case.
I can see potential snags in my case in both arms of the trial, so I'm sort of glad I don't get to choose.
My memory fails me as to where I've heard "get fit for treatment" but I think that relates to the FCR arm. In simple terms though as CLL patients we need to look after ourselves as best we all can. The key with exercise though I'm sure is to make sure to get the rest to go with it, and often I probably haven't got that right.
I've only got the one Canna Lily in a pot. I was amazed to see it flower in England, but the summer was good. Weather is now generally more traditional wet and windy. Last winter the Canna just went in the back of the garage, with just a drop of water now and again. Also didn't have time to repot it in the spring.
In my case I'm not thought to have fully mutated Ig (from only taking 4 years to get to treatment stage), so I (wild) guess FCR might last say e.g. 3->5 years.
For the IR arm I have concern about the effects on the digestive system as I'm not the most robust in that area (so interesting if IR would make that issue worse, or I might not notice much as I've already got the issue).
So I'm glad on the trial I don't have to make the choice.
I'm just hoping the spleen will keep doing its stuff (and not something very bad to it's neighbors) for long enough to get me to the actual treatment phase of the trial, assuming I do pass the baseline tests (otherwise FCR).
IciCLLe sounds interesting but I note it is a feasibility study with only 40 places, and I guess might now be closed or near to closing?
Thank you Ernest. Yes I think the trial I am lucky enough to be on may just about have closed. May I wish you the very best of luck for the future. Each day counts...
That is probably the thing CLL has taught me most, to enjoy and get the most out of each day in a positive way. That's true for anyone, but CLL heightens the awareness.
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