Todays consultation

Well, I have had a consultation today with my permanent Haematologist after my immunophenotyping test last month.

Pleased to say he is very chilled about where I am now, he said my bloods are very good and no need to consider any treatment yet and hopefully not for a long time. He has basically told me that if my next set of results come back good when he next sees me on 12th July, then we will reduce the number of consultations to 6 or even 12 months. He did however tell me I can ask to come and see him any time I want, just ring and make an appointment so that is very comforting.

He said my CD38 result was good and that I am in the better group in that it looks like it won't become aggressive quickly, he did however caveat that by saying these can change and when things start to change in my bloods he would repeat these tests.

Regarding my blood tests, he has said he is willing to copy me in on all the letters he writes to my GP and is more than happy for me to have copies of my blood test results so I can monitor them myself.

All in all a good result and probably the best outcome, needless to say both me and my wife are happy with that. Oh and he's dishy so she likes him!!!

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  • Excellent news. May your cll continue to be a slow problem. It is great to just get on with life.

  • Well I reckon that has got to be an excellent result. I'm pleased to hear you have a permanent haematologist and that you've been given access to him whenever needed. You DO need a haematologist with CLL experience for the best outcome in living with CLL.

    As your haematologist says, things can change, but for now you've been given a good prognosis with followup and you are being given access to your results. If you want to get a feel for your baseline levels, then give these a try:

    clltopics.org/YourCharts.htm

    If you do plot your results, be warned that blood test results can fluctuate significantly. Some of it is due to equipment calibration, how well the blood was taken, the time of the day it was taken and what you were doing beforehand (exercise, fluid levels, previous or current illnesses, etc). Trends are what's important, so don't get concerned at unusual results and by all means contact your haematologist if you have any concerns. My blood test results come back with warning stars on quite a few tests, but I know that's what's now 'normal' for me.

    I was diagnosed the same way as you at 54 - and would have been a year younger than you at diagnosis (in 2006) if an earlier abnormal blood test had been followed up. I was diagnosed at stage IV in 2009 and now wish I had some blood test results from before I had SLL/CLL for a baseline comparison - so don't lose your results! After diagnosis, I started off with monthly blood tests and haematologist appointments, but 4 years later I'm still in Watch and Wait and I'm having blood tests every other month and see the haematologist every 4 months. I expect you'll be following the same pattern as your haematologist gets a feel for how your particular experience of CLL will progress.

    Here's to a boring life with CLL - you now know where to come to if you have any concerns. Oh - and don't forget to reassure other newly diagnosed members!

    Neil

  • Thanks both and for the Links Neil.

    Yes I am becoming accustomed to the fact I know I have an illness but it aint obvious and explaining to people. Still, I find it good to come here and onto the Macmillans website where I have my circle of friends in the same condition, hope to see some in July in Southampton.

    Kirk

  • So pleased for you; long may you stay on watch and wait.

    I have found it useful to have copies of my blood results and to plot them for trends as Neil said. I recently plotted my results of the last three years and drew a graph the old fashioned way, graph paper and pens, so thank you Neil for the Excel link. I produced the graphs at my last meeting with my Consultant; it really aided our discussion and he even took a photocopy of the graphs.

    Keep well.

  • Brilliant all the best for the future it is so good to have positive news on our journeys.

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