The Leukemia & Lymphoma Society - Fighting Blood Cancers
4 Replies Latest reply: Jun 2, 2012 11:23 AM by Tex RSS

No one is telling me anything

Grapes4111 Registered Users
Currently Being Moderated

I'll start with: I have had bruising for... well, I don't even know how long.

 

I went to my doctor, who ran tests for hemophilia, etc. - nothing. So he sent me to a hematologist (in the cancer center).

 

I had blood work taken, waited, and then finally saw the doctor. He proceeded to draw me pictures explaining the blood process, etc. because my WBC was high. Keep in mind I'm 27. Apparently my WBCs, or "fighter pilots" are fighting something. He said he didn't want to give me any "names" because he didn't want to scare me, however he kept throwing in leukemia, chronic, and saying we can look at many treatment options to keep it in remission? They spent too long feeling my stomach, and sent me to get a CT scan.

 

Now he is on vacation - and my life is on hold.

 

I called to ask about my blood work and his assistant would only give me half the information, my WBC and platelet counts, and proceeded to tell me there were a couple off things but I need to wait for the doctor. I also cannot see another - they're busy. She said my blood work was fine, and specifically, that I do NOT have chronic myeloid leukemia. I got my blood work from my family doctor once they faxed it.

 

Things ARE NOT FINE. Right at the top of the paperwork, it states leukocytosis, thrombocytosis, and "evaluate for myeloproliferative disorder"

 

Someone please give me some kind of information. Do I really need to be worried?

 

Symptoms: go to sleep - wake up with another bruise (they have steadily gotten bigger), sore legs in general, weight loss - 163-135 ( I am also on adderall, so it's hard to tell) from Decemer-ish to now

Blood work:

WBC     12.3 H (high/low)   

Platelet     538 H (I also started menstruating a day or two after the test - so the levels actually decrease before, they are probably lower than they would be)

ANC Auto   8.4 H

Neutrophils Auto     68.3 H

Lymphocytes Auto     24.2 H

(all others are high normal)

Fibrinogen     365

TSH     .11 L (range is .27-4.20) so I'm slightly(?) hyperthyroid

Thyroglobulin     264 H (supposed to be < 22)

C Reactive Protein     <5.0 (supposed to be 0.0-8.0) so normal

 

Can anyone tell me - are these numbers something to be worried about?

  • Re: No one is telling me anything
    babygap5 Registered Users
    Currently Being Moderated

    Oh how irritating for you, so sorry you are going through this.  I wish I could help with the numbers on your results, but I can't.  I think it's terrible that they will not let you see another doctor, that is just unacceptable.  If I were in your position, I would call back and ask to speak to the office manager or supervisor and explain the results and why it is important that you get in to see another doctor in the practice and that you can't wait for your doctor to get back from vacation.  I would make a pain of myself, this is to important to not be seen.  Please consider calling them back - if a doctor can't see you, at least maybe they could call you back with a better explanation of the results. 

  • Re: No one is telling me anything
    Trey Registered Users
    Currently Being Moderated

    The report statement: "leukocytosis, thrombocytosis, and evaluate for myeloproliferative disorder" means you have high WBC and high platelets, which led the lab to suggest further evaluation for an MPD of some sort.  That is fairly standard, so it is not conclusive. 

     

    The easy bruising shows some issue with the blood, and may be related to the high platelets.  The bruising is capillary leakage/breakage, which can be the result of poorly functioning platelets even though numbers are high.  The "feeling the stomach" thing is trying to see if the spleen is enlarged enough to feel by hand (not always possible even if enlarged, so CT scan is more accurate). 

     

    I obviously do not know what your specific issue is, and it may not be an L&L disease.  Here are some items to discuss with your Onc:

    1) There are several MPDs that include high platelets, and you can read a brief overview of them to help you understand what the docs say:

    http://en.wikipedia.org/wiki/Myeloproliferative_disease

    2) The first sign of developing CML can be high platelets, then the WBC rises over time (as happened in my case).  I only point this out because what you were told is not entirely accurate.  So early stage CML should still be on the list of possibilities.  BMB would be needed.

    3) If the CT scan shows enlarged spleen, then MPD is more likely; but if you are in very early stage development, it may not be enlarged.

    4) Discuss having a Bone Marrow Biopsy (BMB), which is the definitive way to diagnose an MPD.  Given your symptoms, it is a good idea at this point.

    5) Under any scenario, you should have frequent CBCs (maybe monthly) to monitor the blood counts

     

    Remember that this could be something else, so stay in touch with your GP doc as well.

  • Re: No one is telling me anything
    mamaL3 Registered Users
    Currently Being Moderated

    Hi ! I'm new here and have a few questions about my 3 (almost 4 yr old son)

    He is normally a super high energy, crazy, silly, NORMAL 3 year old. He runs, swims, and does gymnastics regularly. For the past 2 months or so he has been complaining of knee pain and has had low grade fevers on and off, and has been exhausted and VERY grumpy. After gymnastics one day his teacher pulled me aside to tell me that he had been complaining of bad knee pain and wouldn't participate in his favourite stations as he normally would. She suggested I have him looked at.

    I took him to my family doctor and he explained that this was probably a  virus (he had also been extra tired and taking uncharacteristic naps) and decided to take a CBC just to be safe. He told me that his RBC was low and WBC was a little high but never gave me any numbers and told me not to worry.

    A few weeks passed and nothing had changed! My husband took him back and told him of the symptoms again (joint pain, stomach ache, low grade fevers, exhaustion, and TONS of bruising on his legs and lower abdomen). He decided to refer us to the pediatrician. The pediatrician checked him thoroughly. He wasn't overly concerned with the bruises, but was with the low RBC, puffiness/darkness around the eyes, swollen lymphnodes and lethargy.

    He sent us for some more blood work (not too sure what) and a chest x-ray. That was on tuesday and it is now friday. If something was wrong would we have heard by now?? I called the office today and they told me the pediatrician was off yesterday and today.

    Has anyone else had a similar experience or advice on what to do?

    THANKS!!!!

    ps. i forgot to mention we are waking up with him every night SOAKED in sweat!

    • Re: No one is telling me anything
      Tex Registered Users
      Currently Being Moderated

      You can always ask for a copy of any of your or your child's test results.  That way you can know the exact counts and how high or low they are.  Just being a little over the line one way or the other isn't much to worry about. 

       

      The only thing that stands out to me is the night sweats.  However, they could come from any number of things.

       

      Overall, I wouldn't worry but I'd get my hands on those printouts soonest and see what the issue truly is.  Some tests take longer than others, especially if they're looking for an infection of some sort.  Most docs will call as soon as a bad test result comes in.

       

      Blessings

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