Myelofibrosis & MPNs

Expand all | Collapse all

Mom is 75 years old and has myelofibrosis

  • 1.  Mom is 75 years old and has myelofibrosis

    Posted Jul 28, 2015 09:58 AM
    Mom is 75 years old and has myelofibrosis
    So she lives overseas, and yesterday I got an email response from her doctor

    By the way, my mom receives blood routinely. If she does not, she claims she feels very weak and not good.

    Summary of doctor's email
    -------------------
    We are planning any overlap for your mom, your mom is chronic myelofibrosis

    Even in the young patients, bone marrow transplant is not a permanent fix. Your mom is 75 so transplant is not a good idea. A little bit younger patients
    can have this transplant called RIC which is less dense transplantation. But this will not be suitable for your mom

    I decided to give her pills of talidomid and prednol sometime ago. I was trying to reduce the need for blood transfer but the 3 months of treatment did not work.

    So we took another sample (she does not say sample of what) and realized she has grade 4 myelofibrosis that is why her spleen has been getting bigger.

    So as a last resort we decided that Jakavi (ruxolitinib) is the way to go.
    -----------------------------------

    In the country she is in, Jakavi is not for sale, so I guess she is relying on me to buy it and send to her.

    So what do you guys think about the above email?


  • 2.  RE: Mom is 75 years old and has myelofibrosis

    Posted Jul 28, 2015 05:42 PM
    from http://www.mayoclinic.org/diseases-conditions/myelofibrosis/basics/treatment/con-20027210

    "Allogeneic stem cell transplantation — stem cell transplantation from a suitable donor — is the only treatment that has the potential to cure myelofibrosis. But it also has a high risk of life-threatening side effects.

    Most people with myelofibrosis, because of age, stability of the disease or other health problems, don't qualify for this treatment"

    I had stem cell transplant a year ago for MDS. Maybe you want another opinion depending on your mom's overall health.

    I was 73 at transplant. A year later 100% en-grafted. Transplant drugs were withdrawn too soon so I had one major infection which has been cured and some GVHD that seems to be getting under control. I will be 75 next month. I would do it all again in a heart beat.

    I wish your mom good healing.

    Ray


  • 3.  RE: Mom is 75 years old and has myelofibrosis

    Posted Jul 29, 2015 12:15 AM
    Another patient on here was on thalidomide and prednisone and when she stopped responding she was put on Revlimid which worked for quite some time. Perhaps this drug is available in the country your mum lives in and it might be suitable. It wouldn't hurt to ask her doctor.


  • 4.  RE: Mom is 75 years old and has myelofibrosis

    Posted Jul 29, 2015 10:04 AM
    Quote:
    Originally posted by rar â–º
    from http://www.mayoclinic.org/diseases-conditions/myelofibrosis/basics/treatment/con-20027210

    "Allogeneic stem cell transplantation — stem cell transplantation from a suitable donor — is the only treatment that has the potential to cure myelofibrosis. But it also has a high risk of life-threatening side effects.

    Most people with myelofibrosis, because of age, stability of the disease or other health problems, don't qualify for this treatment"

    I had stem cell transplant a year ago for MDS. Maybe you want another opinion depending on your mom's overall health.

    Ray


    Thanks Ray

    Getting another opinion is a good idea

    Anybody else want to comment?


  • 5.  RE: Mom is 75 years old and has myelofibrosis

    Posted Aug 08, 2015 11:26 AM
    If my mom takes jafaik woukd this stop spleen's getting bigger?