Very Slow Developing Lymphoma

Folks24
Folks24 Member Posts: 106
edited March 2014 in Emotional Support #1
Anyone heard about this. My dr thinks I have this. I just am abnormal in white cell count, lymphicides & the one connected w/lymphcides. I have no symptons and feel just fine. I had biopsy, scans, etc & they can't pinpoint it. So, get to come in yearly and have a bunch of blood tests done to "monitor" me. They won't do anything "treat" until my numbers get a lot higher. I've been pretty stable for 7 yrs now.
Anybody know or heard about this?

Comments

  • lfondots63
    lfondots63 Member Posts: 818 Member
    #2
    Hi Folks,

    I haven't heard of this but my father had CLL which is a "wait and see" treatment also. He had to wait until his white blood count was very high before they would treat it. Did you call ACS to find out more information? Did you doctor give you any resources to look into this? I think the hardest thing is to just wait. If your like me you want a plan of attack. HUGS and know that there are others out there that understand your pain.

    Lisa F.
  • Folks24
    Folks24 Member Posts: 106
    #3
    lfondots63 said:

    Hi Folks,

    I haven't heard of this but my father had CLL which is a "wait and see" treatment also. He had to wait until his white blood count was very high before they would treat it. Did you call ACS to find out more information? Did you doctor give you any resources to look into this? I think the hardest thing is to just wait. If your like me you want a plan of attack. HUGS and know that there are others out there that understand your pain.

    Lisa F.

    I called ACS and they didn't know what to tell me either. My family dr is "ticked" that the specialists don't know what it is. Nobody knows anything so I've been given no resources, etc. at all. A cancer spec told me it definitely wasn't cancer. I see an interal med specialist every yr now. All they know is those 3 abnormal numbers and that I am fighing some kind of infection. Otherwise, everything else healthwise is just fine with me, thankfully.
    I am a gal & just the kind of person that wants to take care of things now before it gets any worse. Especially while I am younger and can maybe fight it better. I just have to realize with "this stuff" you just can't do that.
  • kd2toyou
    kd2toyou Member Posts: 11
    #4
    Have you had a Pet-Scan yet?
    I think it could tell you more.
  • Folks24
    Folks24 Member Posts: 106
    #5
    kd2toyou said:

    Have you had a Pet-Scan yet?
    I think it could tell you more.

    I don't think I had the Pet-Scan yet. I had the scan w/just the dye and the one w/the dye & drink. Someone else asked me that too. Don't know why drs have not mentioned that. One wanted to go in for another biopsy but even if something was found nothing would be done until my numbers got up there and then I'd have to do it all over again. I have a followup in May and I'll ask about the Pet-Scan. I've heard that it pinpoints cancer cells? Wonder why it wasn't done in the first place? I'll ask.
  • TereB
    TereB Member Posts: 286 Member
    #6
    Folks24 said:

    I don't think I had the Pet-Scan yet. I had the scan w/just the dye and the one w/the dye & drink. Someone else asked me that too. Don't know why drs have not mentioned that. One wanted to go in for another biopsy but even if something was found nothing would be done until my numbers got up there and then I'd have to do it all over again. I have a followup in May and I'll ask about the Pet-Scan. I've heard that it pinpoints cancer cells? Wonder why it wasn't done in the first place? I'll ask.

    Hi Folks24,
    I've had the Pet scan. I am not 100% sure but I think it shows stuff on the bones; I have mets in many of my bones. The CAT scan, drink and dye, I have twice a year and I think that one shows the soft tissues. Have you had an MRI? I have that twice a year too and that is how my onc keeps an eye on my body. Different tests show different things.
    Keep up with your follow-ups, they are important.
    All the best,
    TereB
  • Folks24
    Folks24 Member Posts: 106
    #7
    I've had at least a couple MRIs, numerous numerous blood tests, xrays, etc. I am keeping up with my yearly followup and get a thorough physical every year. Guess like everyone else, not knowing is hard but I take it one day at a time. Leastwise I am not showing any symptoms, just the weird blood numbers. Thanks for your advice and help.

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