MONOMAC SYNDROME

Steve2014

Hi there im steve I have been recently been told I have MONOMAC syndrome ie immune deficiency.  And will need to get a bone marrow transplant to save me getting leukemia down the line, questions I have are how long after cemo are everyone back to work?  I am 31. 

Also how long do u feel crap for ie being sick etc, know everyone different just a rough figure, thanks 

mbarrett

 I'm not sure where you are

 I'm not sure where you are now, since I am answering 5 months later, but I'll tell you my experience

I have been looking for someone else who has MonoMac Syndrome. There's only a few dozen of us in the world. I was diagnosed in 2014 during my Junior year of high school. I received a bone marrow transplant in December 2014 after discovering my sister was a perfect match for me. The chemo ran for 2 weeks. You will be hospitalized most likely, since you can't go living with no immune system very well in the public sphere. I was in the hospital for about 2 months at Boston Children's Hospital. Followed by the transplant and being released from the hospital, I spent 8 months in isolation to let my bone marrow grow and my immune system heal. I am almost 2 years out and will be turning 19 this November. 

Feeling like ****... it's something that doesn't go away for a long while. I felt like **** day in and day out for about 6 months. It gets better as you go off the drugs they have you on, but your body is just so tired. After I returned to school I was just so worn out for solid 10 months. I am now recovering and working out daily. 

Any questions, let me know, I hope this helps somewhat.

TXkaren04

MonoMAC syndrome

I was diagnosed in July 2017.  I have been immunocompromised for most of my adult life, after I got Mono.  The doctors at MD Anderson in Houston diganosed me with "Chronic Epstien Barr Disease" in 2002.  I participated in a few trials and experimental meds which none were able to provide any results.  I managed to graduate college, work various jobs, get married and have a child all while fighting Chronic EBV.

In July 2017 I got so sick that my husband took me to the ER where they diagnosed me with AML.  I went through a month of chemo at South Austin Medical clinic.  Dr. Aravind Ramakrishnan identified my symptoms as MonoMac only because previously he had worked at NIH who had just discovered MonoMAC a few years before. 

There are a few genetic identifiers that "diagnose" MonoMac, but SAMC was only able to test for a couple of them.  The ones they were able to test for came back negative.  He referred me to MDACC where they were able to test for all of the markers.  That's where they found that my Leukemia diagnosis was due to the Gata2 gene (MonoMAC), which was also the cause to my previous diagnosis of CEBV..

I had a bone marrow transplant on Feb 12, 2018 and am currently recovering and feeling pretty good.  I should be discharged back home in about a month an a half.  There is a mandatory 100 day recovery phase after the transplant.  I have to stay with in a 30 minute drive of MDACC for consistant doctor appointments.  After that I will return home and will have monthly appts for 6months, then less appts from then on.  

My olderst brother was tested for Gata2 and came back negative.  He was my donor.  My other brother came back positive but is asympomatic.  We are having my daughter tested in a week.  Since it is hereditary my mother and father may be tested to see which side of the family it came from.

I would love to hear other people's stories, since I have been told that as of the end of 2017 only about 30+ have been diagnosed with MonoMAC syndrone.  

TXkaren04

TXkaren04 said:

MonoMAC syndrome

I was diagnosed in July 2017.  I have been immunocompromised for most of my adult life, after I got Mono.  The doctors at MD Anderson in Houston diganosed me with "Chronic Epstien Barr Disease" in 2002.  I participated in a few trials and experimental meds which none were able to provide any results.  I managed to graduate college, work various jobs, get married and have a child all while fighting Chronic EBV.

In July 2017 I got so sick that my husband took me to the ER where they diagnosed me with AML.  I went through a month of chemo at South Austin Medical clinic.  Dr. Aravind Ramakrishnan identified my symptoms as MonoMac only because previously he had worked at NIH who had just discovered MonoMAC a few years before. 

There are a few genetic identifiers that "diagnose" MonoMac, but SAMC was only able to test for a couple of them.  The ones they were able to test for came back negative.  He referred me to MDACC where they were able to test for all of the markers.  That's where they found that my Leukemia diagnosis was due to the Gata2 gene (MonoMAC), which was also the cause to my previous diagnosis of CEBV..

I had a bone marrow transplant on Feb 12, 2018 and am currently recovering and feeling pretty good.  I should be discharged back home in about a month an a half.  There is a mandatory 100 day recovery phase after the transplant.  I have to stay with in a 30 minute drive of MDACC for consistant doctor appointments.  After that I will return home and will have monthly appts for 6months, then less appts from then on.  

My olderst brother was tested for Gata2 and came back negative.  He was my donor.  My other brother came back positive but is asympomatic.  We are having my daughter tested in a week.  Since it is hereditary my mother and father may be tested to see which side of the family it came from.

I would love to hear other people's stories, since I have been told that as of the end of 2017 only about 30+ have been diagnosed with MonoMAC syndrone.  

Update!

As of today, we have found out that my daughter does not have the Gata2 gene!  However, my newphew from the brother that is postive is also positive.  He is their only child.  My mother tested positive, as well as her neice.  My mom's sister was just diagnosed with breast cancer and has not been tested for the Gata 2 gene.  Both of my grandparents on my mother's side are deceased, but my grandfather was very ill for the last decade of his life.  My grandmother was very healthy.