Inversion 16 (M4)

amesch1
amesch1 Member Posts: 2
in Leukemia #1

New to site and looking for fellow members that have the same type as me. I'm 23 year old male going on my fourth month in remission. I was diagnosed February 2014.

Comments

  • leephish
    leephish Member Posts: 1
    #2
    I have Inversion 16

    Hello i am Lee Price and was diagnosed on aprill 14th 2014 with AML Luekemia.  I really would lov to talk to anyone who has been diagnosed with this inversion. I am being told it is a good marker and that I can beat this without bone marrow transplant. The first round of treatment which is called introducion killed all the leukemia in my blood and bones and I was told that because of Inversion 16 the treatment did so well. Is this the case for you? I am obviosly in consolidation right now wondering how consolidation goes for people with inversion 16. What is being told to you by your doctors on Inversion 16? Are they giving good news or is different from what I am being told? I am lost and scared and need to communicate with another Inversion 16 patient.

     

  • amesch1
    amesch1 Member Posts: 2
    #3
    leephish said:

    I have Inversion 16

    Hello i am Lee Price and was diagnosed on aprill 14th 2014 with AML Luekemia.  I really would lov to talk to anyone who has been diagnosed with this inversion. I am being told it is a good marker and that I can beat this without bone marrow transplant. The first round of treatment which is called introducion killed all the leukemia in my blood and bones and I was told that because of Inversion 16 the treatment did so well. Is this the case for you? I am obviosly in consolidation right now wondering how consolidation goes for people with inversion 16. What is being told to you by your doctors on Inversion 16? Are they giving good news or is different from what I am being told? I am lost and scared and need to communicate with another Inversion 16 patient.

     

    Sorry it took me so long to

    Sorry it took me so long to respond back. I just recently finished my fifth round of chemo total (4th consolidation). I've been in remission since induction and have since cleared all mutations from my bone marrow tests. When I was diagnosed back in February, I had four mutations in addition to the Inversion 16 CBF. I don't recall stem cell ever being mentioned to me through all of this. With the inversion 16, it appears that chemo only is usually the first way to treat it unless other factors come into play. I kind of get told about "good news" with this type, but the doctors I see always tow the line so as to not make you overly confident or overly nervous. It really is a scary thing to go through, but at the same time appears more beatable than some other cancers. I'm at a crossroads in my treatment. My protocol calls for 7 total rounds (1 induction, 6 consolidation), but I'm not sure if I want to proceed with it any further. My reasoning is that physically it is quite draining and also, as I'm sure you've expereinced, you are very susceptible to infection 90% of the time between treatments. I have been very fortunate and have avoided fevers and ER visits since early March. With flu season just around the corner, I'm nervous about going into it with an incredibly weak immune system should I choose to go two more rounds. I meet with my doctors again at MD Anderson in a few weeks and will discuss it with them further. The results I see incline me to stop being I have received five rounds already, but I never make hasty decisions and I like to weigh everything out.

  • Juliemah
    Juliemah Member Posts: 2
    #4
    leephish said:

    I have Inversion 16

    Hello i am Lee Price and was diagnosed on aprill 14th 2014 with AML Luekemia.  I really would lov to talk to anyone who has been diagnosed with this inversion. I am being told it is a good marker and that I can beat this without bone marrow transplant. The first round of treatment which is called introducion killed all the leukemia in my blood and bones and I was told that because of Inversion 16 the treatment did so well. Is this the case for you? I am obviosly in consolidation right now wondering how consolidation goes for people with inversion 16. What is being told to you by your doctors on Inversion 16? Are they giving good news or is different from what I am being told? I am lost and scared and need to communicate with another Inversion 16 patient.

     

    Inversion 16

    Hi,

    I am an inversion 16 core binding with a kit mutation (myloid sarcoma) and yes 16 is very treatable with chemo. I am doing consolidation and they admit me for a week for the chemo and so far I have gotten 2 infections.  I have recovered well.  You have to believe the chemo is killing all the cancer cells and you will do great.  It is hard but you will get through it and keep visualizing you are cured even when it is difficult.  I'm doing 3 consolidation rounds.  They typed my siblings to make sure there is a match just in case.  The doctors were super excited with inversion 16 and believe it is a 80% chance of a cure.

    Julie

  • Juliemah
    Juliemah Member Posts: 2
    #5
    amesch1 said:

    Sorry it took me so long to

    Sorry it took me so long to respond back. I just recently finished my fifth round of chemo total (4th consolidation). I've been in remission since induction and have since cleared all mutations from my bone marrow tests. When I was diagnosed back in February, I had four mutations in addition to the Inversion 16 CBF. I don't recall stem cell ever being mentioned to me through all of this. With the inversion 16, it appears that chemo only is usually the first way to treat it unless other factors come into play. I kind of get told about "good news" with this type, but the doctors I see always tow the line so as to not make you overly confident or overly nervous. It really is a scary thing to go through, but at the same time appears more beatable than some other cancers. I'm at a crossroads in my treatment. My protocol calls for 7 total rounds (1 induction, 6 consolidation), but I'm not sure if I want to proceed with it any further. My reasoning is that physically it is quite draining and also, as I'm sure you've expereinced, you are very susceptible to infection 90% of the time between treatments. I have been very fortunate and have avoided fevers and ER visits since early March. With flu season just around the corner, I'm nervous about going into it with an incredibly weak immune system should I choose to go two more rounds. I meet with my doctors again at MD Anderson in a few weeks and will discuss it with them further. The results I see incline me to stop being I have received five rounds already, but I never make hasty decisions and I like to weigh everything out.

    MD Anderson

    I'm going to be treated at MD Anderson in January.  Do you like it?   Which doctors do you recommend?  Thx!

     

    Julie

     

Discussion Boards