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    Turns out that I have parainfluenza virus type 3...

    Turns out that I have parainfluenza virus type 3 (HPIV-3). Another to add to my roster. Types 1 & 2 cause croup, so I dodged a bullet there. It seems to be clearing up, but I am still surrounded by...
  2. Excellent! Thank you for checking back in. Right...

    Excellent! Thank you for checking back in. Right behind you at 4 years next month.
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    The worst possible thing that a doctor can say is...

    The worst possible thing that a doctor can say is "We can't rule cancer out." Very comforting, huh? Doctors need to learn that you do not havw cancer until a pathology report says you have cancer.
    ...
  4. Thread: Hi everyone!

    by po18guy
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    Hello, Marian! Clearing up a head cold and...

    Hello, Marian! Clearing up a head cold and pneumonia, but we're holding our own. Making progress against the GvHD, but still have a ways to go. Prayers ascending for you and David.
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    Thanks, all! I must eay that I feel substantially...

    Thanks, all! I must eay that I feel substantially worse than when I was in the hospital - but that was infections+anemia. Will simply have to wait this one out. As to my mountain bike, I ride...
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    Everything was going along halfway decent....

    Everything was going along halfway decent. Therefore, I had to develop a couple of infections. Worst is pneumonia in the left lower lobe - the usual suspect. However, the same (or another) infection...
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    I was cathterized for perhaps two hours for a...

    I was cathterized for perhaps two hours for a PET/CT scan. When the catheter was removed, I had painful urination for two weeks. Even though the catheter looks tiny, that is a pretty large tube to...
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    Back when I had those symptoms, it was called...

    Back when I had those symptoms, it was called tonsillitis and they simply removed them. Better antibiotics today mean that many can keep them.

    I wonder what doctor will say?
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    Please consider seeking a second opinion on both...

    Please consider seeking a second opinion on both diagnosis and treatment. Both can vary substantially from doctor to doctor and facility to facility. Even if you "like" your oncologist, you are well...
  10. Sorry to hear this. No matter where lymphoma...

    Sorry to hear this. No matter where lymphoma shows up, it is a lymphoma - tumors of the immune system. Thus, they can occur anywhere, from eyeballs to pancreas. I have had them in my lymph nodes,...
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    At my second relapse, when I was at stage IV once...

    At my second relapse, when I was at stage IV once again, I had to wait over a month and allow the cancer to grow so that a tumor would be accessible for biopsy. In my experience, lymphoma begins in...
  12. Go here (https://www.clinicaltrials.gov/) and...

    Go here and search "AML" or "MPAL" and lots of results should come up. MPAL may be included in many of the AML clinical studies, but you would have to check the qualifying conditions to be certain.
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    If it persists once treatment is completed, I...

    If it persists once treatment is completed, I would demand a biopsy. They are no big deal.
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    Well, let's see. Found a tumor behind an ear....

    Well, let's see. Found a tumor behind an ear. Went to doctor, got anxiety meds. Asked for additional blood tests for active mononucleosis. Positive. That told me my immune system had failed. Began...
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    Thank you, Richard. It appears that I need dosing...

    Thank you, Richard. It appears that I need dosing which is not currently offered by the manufacturer. So we must settle on a two-day average dose, even though the drug seems to act for about a 10-12...
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    Good and comforting to hear from you. Your blood...

    Good and comforting to hear from you. Your blood numbers will fluctuate - sometimes rather wildly - for for no apparent reason. Almost four years out, mine are still up and down - said fluctuations...
  17. Welcome! But, sorry to hear of this. That is a...

    Welcome! But, sorry to hear of this. That is a tough question, as all types of AML are challenging. If you are in the US, are you at an NCI comprehensive center? If hyper C-VAD was not effective, I...
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    DLBCL is an aggressive form, but it is easier...

    DLBCL is an aggressive form, but it is easier knocked down than other types. IIRC, it is the second most common lymphoma, so there are tons of experience with it and several treatment options.
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    Glad that he's doing better. There are 57-75...

    Glad that he's doing better. There are 57-75 sub-types of lymphoma, depending upon who you ask. For research purposes, it will be very helpful to know the exact sub-type, as they behave differently...
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    I would look for a blood disorder, since ...

    I would look for a blood disorder, since bleeding is on-going and inexplicable.
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    Sorry to hear this. Lyssa has addressed nutrition...

    Sorry to hear this. Lyssa has addressed nutrition very well, so I will focus more on treatment. Surgery is rarely used in lymphoma, and then only in cases where a tumor is inhibiting circulation or...
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    Almost hesitate to mention this, but a skin punch...

    Almost hesitate to mention this, but a skin punch biopsy might be in order to eliminate the possibility of a cutaneous lymphoma.
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    I took the opportunity to create a thread for...

    I took the opportunity to create a thread for your questions. I have had two slightly different T-Cell Lymphomas - one of them three times. 11 years and counting so far. As to information, check the...
  24. Here is a link to a hot off the press fact sheet...

    Here is a link to a hot off the press fact sheet regarding Minimum Residual Disease (MRD) that some patients experience post-treatment. Due to your co-morbidities, I would certainly consider seeking...
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    Doctors cannot make a firm diagnosis even from an...

    Doctors cannot make a firm diagnosis even from an in-person examination. Only a biopsy sample submitted to pathological examination can determine what it is.
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