First consultation - mixed results

Hi all

First of all, apologies to those that read this and the Macmillan site, I have posted the same on both.

Back from the hospital. arrived early and taken to give a gallon of blood then told it would be at least half an hour before they were processed and I would be seen by the consultant.

45 minutes later and I am in (not bad considering), I was greeted by the consultant who told me he was a locum and would be replaced in 3 months by a permanent consultant. He started by taking a picture of my history and then examined me, the good news is all seems to be well and there are no enlarged Lymph nodes.

He told me that the original blood test and todays are both indicative of what he called BCLL (I have to say he sounded Polish) but that is as far as he went and didn't really want to discuss the diagnosis any further because he wants more blood tests!

It turns out that a Friday is not a good day for blood tests because he wants to send some to Birmingham for other specialist tests for CLL, I take it this is to determine the type I have, I forget what he called the tests, I think it was Immunophenotyping.

Anyway, the upshot is that I have to return on Wednesday for another gallon of blood donation and then when those results are back, he will discuss treatment and prognosis in more depth.

So overall, not a bad day but frustrating that I need to o for more tests and wait a bit longer, he did suggest that wjen they came back, depending on the results, he may do an ultra sound on my stomach or even a CT scan.

I asked for a copy of today's results and he did say that when they were written up they would be available for me. I also asked him if he was a specialist and he said he had treated lots of CLL patients before. I now understand why you all say take oyour list of questions with you and write things down.

Kirk

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  • Kirk

    Glad you have the first one out of the way. I remember a bit of tooing and froing in the beginning until they had all the tests in. It does sound as he is being thorough. Waiting for one reason or other does become easier. For the majority CLL doesn't tend to go anywhere in a hurry either .Interestingly some of the most helpful papers I read when investigating CLL types were written by Polish clinical researchers. keep us posted.

  • Immunophrnotyping is a proceedure using flow cytometry to look at all surface proteins. These separate one type of lymphoma or leukemia from another. Consider it the CLL fingerprint, used to confirm your diagnosis.

    It takes bit of time to get all the CLL ducks in a row... and waiting for blood results, simply part of the process...

    ~chris

  • Hi yes waiting for results and then being sent for more tests is something which you have to get used to. The NHS does work very well but not necessarily fast for routine tests. This should be viewed as positive as its when the NHS reacts fast, that there is something wrong. Good luck.

  • Kirk - I highly recommend taking a recording device with you along with your list of questions. Especially when your next tests results are in, you will probably feel like you are listening to a foreign language, and essentially, you are. CLL is a B Cell lymphoma as opposed to a T Cell lymphoma, which would explain BCLL. Let us know how things go next week, and once you have copies of your tests and have had a chance to look them over, people here can help you figure out the things you don't understand.

    Pat

  • Thanks all for your comments and help. I will give an update after my next set of bloods come back, and yes I think a recorder would be useful.

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