CLL Support Association
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Life in a state of remission

Just been for my 6 month check-up post Chemo. I have completely normal blood counts other than low CD4 which is to be expected and its slowly coming up. Scan shows no evidence of any mass and BMB showed what the consultant said as "only evidence of Staining" which he said is the best thing you could hope for. Im reacting badly to Co-Trim so I have a monthly inhaler of pentamadine to warn off pneumonia should I get a bad chest. Great news and better than a lot of people get given, so why do I STILL feel like im sat waiting for this thing to return?

You cant get much better results than this, its a 100% remission yet it seems weird that you get fixed but never cured?

4 Replies

Grizzlebear, I'm experiencing the same thing. I'm also 6 months past chemo and have NED, so really there's no need to worry. All my blood counts are fine and they can't find any problems with my lymph nodes.

Yet! - still I find myself wondering when it will rear its head again. I suspect this is pretty normal and with more commenters joining in I bet we'll hear the same. I have SLL so I'd present with enlarged nodes (never had anything but good blood counts) and some days I'm checking the usual places, but thankfully, I'm also forgetting to look. I'm hoping and expecting that the days of forgetting will increase.

Best wishes! ~SF

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All the best grizzle bear. I think as time moves on things will improve. My best wishes.



Grizzlebear - so pleased for you. Sounds like you will have a good lengthy remission.

I think it's natural to wonder when cll will raise it's ugly head again but with a good remission forecast it shouldn't be for some time yet - so enjoy the months and years ahead. And remember, we probably won't need chemo again, not with all the new treatments available soon.

My wobbly time has faded and I find myself thinking of cll returning less and less and just enjoying my remission time more and more. So travel forward with confidence and peace. All the very best to you.

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I found I got depressed after both times the six chemo months. It seems counter intuitive when all the bloods are going in the right direction and you know the CLL is beaten back for now, so why feel down? In retrospect I think it takes a while to re engage with 'normal' life and to stop being on high alert. After a few months post chemo I start to enjoy normal activities again and stop worrying that my health will let me down. I guess this all comes under quality of life, just as important as levels of platelets and white/red blood cells.

Happy New Year Everyone!


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