• teach45's Avatar

    teach45 posted an update

    I would like to connect with some one who has experienced primary myelofibrosis. I joined approx 2 months ago and to date have not seen anyone with my disease.

    1 Comment
    • DaveWaz's Avatar
      DaveWaz

      Have you clicked on see more in the Find Peers section on your home page? This will provide you with the people on the network who are most similar to you. A good source that might also be able to help is http://www.ImermanAngels.com. The provide 1-on-1 matching support. Great people. Please let me know if you need other support services or resources. We're happy to help any way we can.

      over 4 years ago
  • teach45's Avatar

    teach45 shared an experience

    Decision Point: I can likely qualify for a JAK2 clinical trial but this trial will only effect "quality of life" symptoms and can have side effects that reduces CBC. CBC are in low normal ranges at this time and I do not have other major symtoms. Must decide if the trial is worth it.

  • teach45's Avatar

    teach45 shared an experience

    Clinical Trial

  • teach45's Avatar

    teach45 shared an experience

    Procedure or Surgery: Not much can be done as far as a cure due to age (66) but I do not have any severe side effects yet as disease is thought to be in early stage, Will be monitored month by month to watch for more serious symptoms.

  • teach45's Avatar
  • teach45's Avatar

    teach45 asked a questionRare Cancers

    Just recently diagnosed with primary myelofibrotosis, need info re diet, homeopathic remedies,etc

    • MichaelV's Avatar
      MichaelV

      Get a copy of Susan Sommers book "Knockout". Lot of very interesting alternative methods given by doctors in the field. I had to read it twice because it goes against a lot of what I have been told in the last 9 years.

      almost 5 years ago
    • fusilier's Avatar
      fusilier

      There is nothing in homeopathic materials beyond water or sugar. When you see, on the box, "20C" or "30C" that means stuff has been diluted by 1/100 (C) 20 or 30 times in sequence. Since you are a teacher, ask your colleagues in the chemistry department about Avogadro's Number, and the likelyhood that any particle of original material is likely to remain after the homeopathic process.

      Don't waste your money, and more importantly your precious time and hope.

      Have your physician refer you to a a dietician.

      WRT Ms. Sommers, she's an actor, not a physician or scientist.

      almost 5 years ago
    • teach45's Avatar
      teach45

      Thanks for info

      almost 5 years ago