For people affected by CLL (chronic lymphocytic leukaemia), SLL (small lymphocytic lymphoma), or HCL (hairy cell leukaemia) to get together, ask questions, share experiences and support each other.

First consultation - mixed results

No. of entries: 18 | Posted on 12 Apr 2013 2:57 PM

First consultation - mixed results

  • Hi all

    First of all, apologies to those that read this and the CLL Support 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.


  • Thanks Jue

    You are right I don't feel ill at all and yes you are right I think I expected more but given the circumstances , there is no way he could have. I really need to learn to control my patients

    You are right he checked my spleen and my groin and under my arms and no swelling so good news there, just need the blood tests to come back  good now


  • North Korean Special Forces launch new rocket :)    (click pic)

  • I can't stop laughing!!! That is the funniest thing I've seen in a while. Yes, we in the U.S. are in dreaded fear of North Korean's weapons of self-destruction.



  • Hi Kirk,


    You make a good point. With all that you had in that one hour it seems distracting and confusing. Without the questions written down you probably would have struggled to think of even one. I'm going to follow the advice too and write mine down. Two months until the next appointment so it's going to be a while.



  • 70s music rooolz!!

    Poco - Rose of Cimmaron

    Eagles - Hotel California

    Pretenders - Back on the Chaingang

    Thin Lizzy - Whiskey in the Jar

    Bruce Springsteen - Thunder Road

    Luv it :)


  • Hi Sparky,  Let's see what happens. Nice to put a smile on your face :)

    I have a CT scan tomorrow afternoon, my first. I don't feel bad at all but low Hb and Immunoglobulins. I have been watching the DVD from the midlands meet last May.  Interesting that Lenalidomide bumps up the Immunoglobs.

    Sciatica drags ooooonnnn ad nauseum!! It's very slow way back.

    How are you?, sounds like you've been down a bit. Or should I catch up with HU? I'll have a look.


  • Sorry you're still finding it so tough, Sparky, can't be much left to afflict you now!!!

    Yes tomorrow is neck to pelvis with contrast, only 5 - 10 minutes but have to be there an hour before for cocktails :)

    Yes and I thought the DVD content seemed dated, except that I hadn't heard about the effect of Lenalidamide on Immunoglobs. Funny, I was thinking of getting some early beatles albums myself.

    Don't know Paloma Faith but I did see Peter Gabriel at Hammersmith Odeon after he quit Genesis, (Solsbury Hill et al) and again in 1982 when he Genesis did a gig with him at Milton Keynes Bowl to bail him out after he lost loads of money (eh? Harry Enfield!!)  with the WOMAD.

    Manchester gig should be good, is that with the new blood orchestra?

    Won't get the results of the scan for a while, unless there is something untoward, of course.

    Take good care and put on some favourite music, Loud!!


  • Hey I am a massive Peter Gabriel fan and I also have tickets for Manchester in October.  See you there Sparks.

    Saw his first concert after leaving Genesis and followed him since, Loved Genesis when he was with them, Lamb Lies Down is awesome along with Foxtrot.

    Saw the New Blood concert at the O2 and was at the filming of the 3d concert at Hammersmith Apollo, was 2 rows from the stage :)

  • Yay love the references Sparks, The best track on the album clever lyrics indeed. I think a Genesis/PG fest is in order this weekend, IPod loaded

  • At the last count, I have 13 Genesis albums, mmmhh  "I  know what I Like"  and have seen them 4 times, 3 in the 70s and the Milton Keynes gig with PG. Hard to say what was fave but the Seconds Out at Earl's Court was very special, the live album is from the Paris gig but it was the same at Earl's Court.  I also have the 'When in Rome' DVD which is brill.

    Lucky you guys going to PG in Manchester.

    Yes, a Genesis weekend, I think.


  • just to keep it going, bit late but I had to go to Brighton and watch my team get relegated, on the drive down plugged into my iPod and had a session of Paloma Faith, Florence and the Machine and Foxtrot.

    Got me thinking, most appropriate track for all us CLLers? has to be Get em out by Friday (nasty blood cells of course


  • It sounds like a heavy metal band, "Nasty Blood Cells". Maybe we could get an internet band together and create an MP3 of some sort. The song could go something like this:

    I've got C. L. L.

    You say it don't ring a bell?

    Let me give you a show and tell.

    Because quite frankly it gives us hell.


    At this point Sparkler could bite the head of a gummy bear or something to show how heavy a metal band we are.



  • I think Jelly Babies and Gummy Bears are about the same thing depending on which side of the Atlantic one is on, I'm not sure however.


    Pitbull for instance could get a tattoo of something really horrible, like, like, ummmm, thinking out loud here, like a honey bee. And it could be biting off the head of a Jelly Baby! He would make a great bass player!


    Hairbear would be the drummer. He wouldn't need to bite anything, nor his tattoo. But he could get an earring for his nose and a nose ring for his ear. Now that's metal at it's heaviest!


    Me? I would be screaming a lot because of this nightmare I'm concocting, while biting whatever is left of the Jelly Baby.


    Oh, and there would be some singing in there too I suppose by someone playing a harpsicord.


    And the people would be shouting, NBC, NBC, wait, that's trademarked in the U.S. They'll just be shouting "no more, no more!" Yeah, we'll be so awful it will be good!



  • Mikey - the kazoo player. As far as I know he would be the first kazoo player in a metal band. He would have spiked hair with each one a different color kind of like a bag of Skittles. Spikes of course don't bite anything because they are made of hair. That would be silly. But they could be neon or flourescent! Mikey can have his spiked hair glowing under a black light while serenading the ladies with his talented kazoo playing skills!