Myelofibrosis/blood cancer

LouiseMarcy
LouiseMarcy Member Posts: 4 Member
edited June 2023 in Rare and Other Cancers #1

I was diagnosed on 11/15/19 with myelofibrosis - it's a rare kind of blood/bone marrow cancer.  I'm on a pill form of chemo - jakafi - and beginning the stem cell therapy transplant process.

Having a 'rare' cancer is all kinds of frustrating.  And it's isolating.  As I've never had cancer before, maybe that's true for all types.  I'll be reading thru these boards to learn more.

Anyone else with a rare cancer?  I'm wondering if a generic cancer support group would be helpful?  I can't find one, IRL or online, specific to my diagnosis.

Riight now I'm feeling some "cancer shock" - it's just hitting me at a different level that I have an incurable illness that can kill me.

Any responses/comments welcome

Comments

  • annie4145
    annie4145 Member Posts: 218 Member
    #2
    Hi, welcome to the Board even

    Hi, welcome to the Board even though I wish you didn't have to be here.  Since there aren't that many people in  your board, you can always post elsewhere as well.  I think that any cancer support group would be good, and I also had individual counseling as well which was a big help to me.  I don't have a rare cancer, but diagnosed at stage 3, at the age of 51.  But I am doing well now 1 year after treatment.  How old are you, and are you at a good treating hopsital?  Please free free to PM if there is anything I can do.  Research your illness so you know all the treatment options.  I found google scholar helpful.   I understand just a tad the feeling that you are having about the type of cancer you have being isolating.  When I got diagnosed, my thought was, "why can't I have breast cancer", or a "why can't I have 'good cancer'?  It was depressing for me.  I only told one person outside my immediate family that I was diagnosed with anal cancer.   At least you can say, I have a type of bone marrow cancer, but I understand it would be must better to be diagnosed with a common cancer.   Best of luck in your treatment process.  

  • po18guy
    po18guy Member Posts: 1,499 Member
    #3
    Also on Jakafi...

    I have had Peripheral T-Cell Lymphoma, Not Otherwise Specified (unknown subtype) with two relapses, Angioimmunoblastic T-Cell Lymphoma, and 20q deletion Myeodysplastic syndrome (MDS). Cuyrrently taking Jakafi to control Graft-versus-Host-Disease following an allogeneic stem cell transplant.  My prognosis (last time I even had one) was "extremely poor" and that was in February, 2009. At that time I was in a quickly dwindling group that had a 3 month average life expectancy.

    As Yogi Berra said: "It ain't over until it's over."

  • LouiseMarcy
    LouiseMarcy Member Posts: 4 Member
    edited September 2020 #4
    annie4145 said:

    Hi, welcome to the Board even

    Hi, welcome to the Board even though I wish you didn't have to be here.  Since there aren't that many people in  your board, you can always post elsewhere as well.  I think that any cancer support group would be good, and I also had individual counseling as well which was a big help to me.  I don't have a rare cancer, but diagnosed at stage 3, at the age of 51.  But I am doing well now 1 year after treatment.  How old are you, and are you at a good treating hopsital?  Please free free to PM if there is anything I can do.  Research your illness so you know all the treatment options.  I found google scholar helpful.   I understand just a tad the feeling that you are having about the type of cancer you have being isolating.  When I got diagnosed, my thought was, "why can't I have breast cancer", or a "why can't I have 'good cancer'?  It was depressing for me.  I only told one person outside my immediate family that I was diagnosed with anal cancer.   At least you can say, I have a type of bone marrow cancer, but I understand it would be must better to be diagnosed with a common cancer.   Best of luck in your treatment process.  

    Hi again

    Hi Annie,   I made a post in mid-December 2019 in this forum, very shortly after I was diagnosed.  You were kind enough to welccome me to the forum.  I think I then went back into denial.  I'm very NOT in denial these days, and I wanted to check in and see how you're doing.  I'm on 2 forms of chemo and have found a decent cancer community on Facebook.  I never forgot your kindness.  I'd love to know how you're doing.

    Louise

  • LouiseMarcy
    LouiseMarcy Member Posts: 4 Member
    #5
    Myelofibrosis

    It is incredibly frustrating to have a cancer so rare, I'm the only one on this site talking about it.  Myelo is one of three rare blood cancers classified under Myeloproliferative Neoplasm.  It's deadly, unless you fit a perfect transplant type, which I don't.  Because Myelo does NOT go into remission, I'm always on chemo, or two.  There is a Myelo support group on Facebook.  If you came here looking for support, I have two suggestions:  a) write in to this organization and ask for some resources   b) go to Facebook, and look for "private myelo support group".  It's PATHETIC that this cancer group gets away with totally ignoring thi group.

  • Debbiejn5
    Debbiejn5 Member Posts: 1 Member
    #6

    I understand, because we are not spueing blood people are unable to understand how bad we feel and fight every day. I have suffered with p-vera for 20 years and now I have Myelofibrosis. I could not win the money lottery, just the Cancer lottery. I thank God for the extra years.

  • Amosd
    Amosd Member Posts: 1 Member
    #7

    I’m sorry you’re going through all of this situation plus feeling alone with an uncommon cancer. I too have one of the 3 MPN cancers, ET with grade 2 MF. At this point in my life (70+), I feel lucky it waited until now to manifest itself. I’m only on 1 chemo pill daily with minimal side effects to date. Since I know right from the beginning that there is no cure, I decided to make the most of my time and energy to be mindful.

    hopefully, you will find some relief and the amount of support you desire to move forward.

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