Hello

Hi, I am nearly 72 and was diagnosed last year as having got "T" Cell CLL, this was quite a shock to the system as you may imagine, I have been in remission since January this year having undergone a rigorous 18 weeks of Chemo. I currently feel great and am getting on with life, hardly think about my condition, but it is still there, and am now on watch and wait. Would be nice to discuss with anyone in a similar position. Take care and whatever remain positive.

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  • Hi Liggo

    Thank you for joining the forum. It sounds like you are doing very well with your illness and treatment, Remaining positive is key getting on with life, but this can be difficult at times.

    We are here to help so if you need any further information you can visit our website (www.leukaemiacare.org.uk) where you can read our booklet on watch and wait or this can be sent to you at home.

    We also have contacts for other patients with CLL who may support you on the phone. if you are interested please call us on 08088010444.

  • Hi, I am a similar age to you and was diagnosed with "T" Cell CLL three years ago, having been neutropenic for seven years, should have been diagnosed much earlier but that is the system eh....From 2013 until Christmas 2016 consultant rightly or wrongly had left things as they were as he said I was 'asymptomatic', this consultant disappeared and the next one on the scene was more concerned about low neutrophils and has put me on methot... Have been taking it now for six weeks, with a slight increase in neutrophils and decrease in white cells. Except for tiredness no effects from the chemo. Is there anyone else on this forum who may be on this forum to discuss at length ...

  • I am different in that as soon as mine was diagnosed I went straight onto Chemo and was given Campath, can't think of the official name. Three times a week for eighteen weeks, I also GCSF injections to boost my immune system. Thankfully it all seems to have worked as I have been in remission for a year now. My Platelet level is still low but everything else is holding. I am on Watch and wait now and next week see my consultant where I hope the news continues to be good. Stick in there and be positive.

  • Hi have just posted please get back...

  • Hi Liggo, Have read your post with interest is the campath available on the NHS ?, first time I have heard of it, research tells me it is an expensive drug....Am seeing my consultant in two weeks so will go armed with a bit more information. What sort of level has this treatment brought your neutrophils up to?

  • Alemtuzumab, is the trade name and yes as my treatment was under the NHS, as for the cost I have no idea. I have no record of my Neutrophil count until having treatment had started and then they were 0.35, at the last count they were 1.47 whereas normal for me should be between 2.0 and 7.5, so slightly low as are some of the other counts but that said my Consultant is happy with them and they are holding if not improving slowly. I do tend to be cautious where I go and when around others trying to preserve my immune system.

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