Just putting a tentative toe in the on line world!

Although I am new to the on line community I was diagnosed as having CLL a bit over nine years ago now, was treated was chlorambucil and then with FCR the following year. I guess I was lucky in that I only needed three courses rather than the usual six for my white cell count to come right down. And yes, the side effects are grim but the results are good; I have been in remission since then. It is only now that my white cell count is just beginning to move slowly upwards. I don't need treatment yet and so far l still feel OK so it's not at all bad. We moved house three years ago and I moved to a different treatment centre, a good move. Gill


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10 Replies

  • A very warm welcome to you Gill and pleased you've joined us. You've done really well from only three rounds of FCR and I hope it's quite some considerable time (preferably never) that you require further treatment.

    Best wishes,


  • Welcome Gill, where are you being treated now, sounds like you recommend them

    UK Marc

  • Hi Mark, I realised when attending CLLSA meetings that if you were lucky enough to be treated at one of the "Centers of Excelence" specialising in CLL treatment then the treatment would be very good. So that is what I requested and it is working well. It involves me in a long journey but it is worth every mile. Gill

  • Is there a list or site informing which are the centres of excellence?

  • Not that I know of but CLL offices may be able to help.

  • Welcome Gill good to hear how well you have done it is very encouraging. Long may it last. Good health to you.


  • Hi Gill,

    Welcome to the on line community! Great that you've had such a long remission, especially after just 3 rounds of FCR. Very encouraging for others who haven't been able to take the full 6 rounds.

    You say you're "just putting a tentative toe in the online world!" I can understand your caution. But I hope you'll soon feel at home here, and the tentative toe touch will become a paddle then maybe a happy swim. :-)

    This was the first online group I joined, and I was a bit cautious at first. But it now feels more like a family - very supportive, very precious.

    Best wishes,

    Paula (in Sheffield, UK)

  • Hi Gill, welcome to our online community, we are pleased you have joined us (although like us all sorry, we and, you have the need to do so).

  • Welcome aboard. You may find the water here very pleasing. This site is very reputable and you can learn a lot and feel supported.

  • Thank you everyone who has sent a welcome, already I feel glad that I have joined you. Patientgill

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