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    "Officially" 4 years old today

    Member abeucher who posts in the Leukemia/MDS forums just wished me a happy birthday. Then it struck me - it was four years ago today that I received that pale transfusion of stem cells. Further...
  2. Thread: Car t

    by po18guy
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    Oh crud - It is today! Thank you very much! As...

    Oh crud - It is today! Thank you very much! As always, I strive to be delighted to be anywhere.
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    I see that there are two general categories and...

    I see that there are two general categories and six types of CVID. It seems to me that based on your desciption and testing, you need treatment, i.e. immunoglobulin infusions to help your struggling...
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    Sorry to hear this. Since you have no diagnosis,...

    Sorry to hear this. Since you have no diagnosis, I moved your post to "worried." It is far too soon to think or worry about cancer. This year in particular, there are many viruses (still) going...
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    Here is my skewed take on this: If you have...

    Here is my skewed take on this: If you have lymphoma, you have it, right? It will make itself known and you treat it then. Even if you have it, it is certainly not an emergency. Are you remembering...
  6. Thread: BM test

    by po18guy
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    We are not doctors or pathologists. But, zero...

    We are not doctors or pathologists. But, zero bone marrow involvement is a good sign. If no myelodysplasia is seen, that is also good. Other than that, I would guess that if her complete blood counts...
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    Although the fear of cancer is real, I think you...

    Although the fear of cancer is real, I think you might be over-thinking this and getting ahead of yourself. Rather than Google cancer, why not study your immune system, i.e. the lymphatic system? It...
  8. Thread: Car t

    by po18guy
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    Dr. has mentioned an immunoglobulin infusion more...

    Dr. has mentioned an immunoglobulin infusion more than once, but we are always monitoring some new drug or combo, so nothing yet. Four years post-transplant (as of Wednesday, July 17th), I fight...
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    Free webinar: Treatment options for AML

    The Bone Marrow Transplant infonet (www.BMTinfonet.org/) announces a free webinar on treatment options, to include transplantation, for those diagnosed with Acute Myeloid Leukemia (AML). The webinar...
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    There are also lymphoproliferative conditions...

    There are also lymphoproliferative conditions that are not cancerous. There are low-grade infections of all three types (viral, bacterial, fungal) that are difficult to detect, but still cause lymph...
  11. If you are diagnosed with anxiety disorder, OCD,...

    If you are diagnosed with anxiety disorder, OCD, scrupulosity or panic attacks, the gold standard in drug-free treatment is Cogntive Behavioral Therapy. Do llook into it, as you deserve to live in...
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    Go with a National Cancer Institute designated...

    Go with a National Cancer Institute designated comprehensive cancer center. Even if it means flying. Do what it takes. You need peace of mind if things are OK, and world-class care if they are not. ...
  13. For the time being, go to www.clinicaltrials.gov...

    For the time being, go to www.clinicaltrials.gov and type her diagnosis in. Numerous results will pop up and you simply have to look for those which are still recruiting members, and which are...
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    Well, it took me two months after I knew I had...

    Well, it took me two months after I knew I had cancer (it was obvious). This onvolved one primary doctor, one ENT, one surgeon, one oncologist, one pathologist - only to receive a mis (missed)...
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    Understood. Obviously, I have been out of the...

    Understood. Obviously, I have been out of the loop for some time. Good and bad, actually.
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    On the subject of monoclonal antibodies, I...

    On the subject of monoclonal antibodies, I received two infusions of Ofatumumab (Arzerra) to control GvHD. Over two years later, I am still B Cell depleted. Pretty potent stuff. From the Wiki:
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    Jennifer, very sorry to hear this. I moved your...

    Jennifer, very sorry to hear this. I moved your post to coping and Support, as that is what you need right now. First thing is that we form our own, individual survival curves. By the stats, I should...
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    Resolving symptoms are a very good sign. I have...

    Resolving symptoms are a very good sign. I have never heard of lymphoma doing that. People are still coughing and hacking - and it's July! Not a doctor, but guessing that you 1) picked up one of the...
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    John, thank you for the well wishes. I appear to...

    John, thank you for the well wishes. I appear to have the remainder of the month without a medical appointment. Odd, that bit. Nevertheless, we are holding our own. Having said that, I bear always in...
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    As to radiation, your body has absorbed more from...

    As to radiation, your body has absorbed more from the sun than you will receive pre-transplant. I'll grant you that it was somewhat more spread out, time-wise. Although it is in the "crude but...
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    No more swabs, as my symptoms have now subsided...

    No more swabs, as my symptoms have now subsided sufficiently for concern to decrease. As well, after putting me through the motions, poking, probing, photographing and scrutinizing my blood numbers,...
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    So sorry to hear this. That news must have been a...

    So sorry to hear this. That news must have been a huge shock. There is an alternative to R-ICE that is intended to be less toxic. As well, any form of ICE is a fairly vintage combination, which is...
  23. Thread: Checking In

    by po18guy
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    Very cool! Thank you for checking in, as we often...

    Very cool! Thank you for checking in, as we often lose touch with members once they finish treatment and their life progresses to the new normal. Your story does indeed provide hope for all with a...
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    And, happy Independence Day to you! As to donors,...

    And, happy Independence Day to you! As to donors, siblings are best. Then children, then unrelated. In my case, we checked the world registry in both 2009 and 2015 and not a single match was found...
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    Tell doctor of your problems. Yes, a course of...

    Tell doctor of your problems. Yes, a course of drugs will probably do nothing, but that is the medical protocol. Since you have had those nodes(s) for so long, what is the emergency? Consider: when I...
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