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MDS Myelodysplastic syndromes

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  #1  
Old Thu Jun 14, 2018, 06:00 PM
Bossywife Bossywife is offline
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CEBPA (VAF 0.59) variant

So I just received a report regarding my husband's Myeloid Gene Panel and was wondering if anyone else has experience with this mutation?

CEBPA (VAF 0.59) but it also says "CEBPA VUS noted"

I'm currently googling, but holy man... there's a lot of info.
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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Old Sat Jun 16, 2018, 02:37 AM
Pearl Pearl is offline
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Quote:
Originally Posted by Bossywife View Post
So I just received a report regarding my husband's Myeloid Gene Panel and was wondering if anyone else has experience with this mutation?

CEBPA (VAF 0.59) but it also says "CEBPA VUS noted"

I'm currently googling, but holy man... there's a lot of info.
I read all the posts on in this forum with great care. I always have difficulty making sense of your posts, which seem disjointed, and now this. It would help me at least to have a comprehensive picture of the blood and bone marrow test results. That would be the way to get the most help.
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Old Sun Jun 17, 2018, 05:51 AM
Bossywife Bossywife is offline
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Originally Posted by Pearl View Post
I read all the posts on in this forum with great care. I always have difficulty making sense of your posts, which seem disjointed, and now this. It would help me at least to have a comprehensive picture of the blood and bone marrow test results. That would be the way to get the most help.
I'm not entirely sure how you would want me to be more clear. My husband shows a mutation on his gene panel called CEBPA. I've looked back to the posts of mine that you've commented on, and honestly I have no idea what you mean by disjointed.

Where we live it takes a while to get into see a doctor and specialist appointments are 6 months apart. I use this forum to get advice from people who possibly have similar experiences. If you don't have a similar experience, I wouldn't expect you to research it for me, just move along and ignore my post.

I read posts here that are so long and rambling I have a hard time understanding what they are asking. I don't make a big deal about it, I just move on. I hope you can do the same.
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Husband (61) dx RAEB1 Apr 2015 after long term bad CBCs (first discovered Apr 2008 after an unknown infection had him hospitalized), currently on watch & wait with monthly bloodwork. Myeloid Gene Panel testing done Aug 2017, showed nothing worrisome. CEBPA mutation
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  #4  
Old Tue Jun 19, 2018, 03:42 PM
Owen M Owen M is offline
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Join Date: Apr 2017
Location: High River, Alberta, Canada
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I have posted on the forum once some time ago when I started on Vidaza. Just completed cycle 16 and am holding my own without transfusions despite being trilineage. I monitor the MDS Forum and am impressed with the support and comfort so many participants bring to each other. It disturbs me when I read the exchange that is taking place here. First of all I have read a number of Pearls posts and this one in no ways mirrors the others. I get the feeling that Pearl was having a bad day and under normal circumstances would have read the first post , ignored it and gone on to something else. In the case of Bossy wife I would hope that she could have recognized that people's emotions on this forum can get the best of them and not taken the bait. We are living with a disease that is confusing at the best of times and can certainly pray on ones emotions. Let's get back to supporting one another when we can. I wish you and your families the best in strength and perseverance .*
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