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The bearer of bad news


bros
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Hi guys. So I haven't been around in a while, life without CN has been similar to life with CN :P.

MK is doing well on their forums.

I graduated college a year ago next week. Still looking for work, but recently, I had to suspend my job search.

So, now to get to the point of the topic.

In March, I had some routine blood tests performed because of my epilepsy and the results were abnormal, in a rather unexpected way. So my neurologist asked me to get it repeated at a hospital that he had privileges at. The blood work was still abnormal, so my GP told me to go to a hematologist/oncologst, which I did. He was very confused by my blood work, and did a bone marrow biopsy on April 15th (hurt quite a bit). He eventually referred me to a specialist at Columbia University Medical Center, who I saw last week.

He said I have either NK Cell LGL Lymphoma or NK Cell LGL Leukemia, each of which have around 10 diagnoses a year.

He also said that my case is indolent, or slow to progress, which means that I can be treated with oral chemotherapy, which should hopefully get rid of it.

So I am not making this post to ask for money (as my health insurance *should* cover everything, if it doesn't, i'll think of something), I am simply asking for support from a community I have been a part of for nine years now.

So I have decided to start up a blog which is a work in progress. So come and visit it, post comments, and if you want, crosspost this topic/post on the forums of your alliances.

Again, the link to my blog is http://igotcancer.net.

Edited by bros2
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Do any of you science folks if NK Cell LCL Leukemia is at all similar to acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), chronic lymphocytic leukemia (CLL), b-cell lymphoma, or myeloma. If so, would any research regarding the genetics of these diseases and treatments be at all relevant to someone with NK Cell LCL Leukemia? Thanks.

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Do any of you science folks if NK Cell LCL Leukemia is at all similar to acute myeloid leukemia (AML), myelodysplastic syndrome (MDS), chronic lymphocytic leukemia (CLL), b-cell lymphoma, or myeloma. If so, would any research regarding the genetics of these diseases and treatments be at all relevant to someone with NK Cell LCL Leukemia? Thanks.


Based on my flow cytometry and other bloodwork, it seems totally different - especially in my case. I have antigens that are associated with both T-Cells and NK Cells, and the cells stain as T-Cells, but have all the properties of NK Cells - including the antigens that are with them. But I am CD3-, which is especially peculiar.
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 Unfortunately we haven't crossed paths in our adventures on planet Bob until now. I am a huge believer in GOD and the power of Prayer. I will keep you in my thoughts and daily prayers as you fight the fight of your life, GOD speed   (I like the blog)  ;) 

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Aww I want to give you hugs, but I'll pray instead. I'm sorry sweetie, but I firmly believe someone as strong as yourself has this beat.


E-hugs are good, and viewing the blog is cool :P
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Based on my flow cytometry and other bloodwork, it seems totally different - especially in my case. I have antigens that are associated with both T-Cells and NK Cells, and the cells stain as T-Cells, but have all the properties of NK Cells - including the antigens that are with them. But I am CD3-, which is especially peculiar.

Does anyone else have a second opinion? If so, speak soon,

 

My work brings me into contact with some of the latest research on these cancers. However, understand I'm not a doctor or a scientist, but merely a humble bureaucrat. Next week I will be reviewing the budgets for various project proposals, during the course of which I will have to also review the scientific proposal. These are some large documents (20+ pages) for someone with limited scientific background. Typically I will only read the highest level information in regards to the science, as my primary focus would be in regards the budgets, organizational structure of the project, and compliance with state and federal regulations (particularly in regards to the use of funds).

 

For me to veer away from this and to give a greater focus on the details of the science represents hours of time for each of these five cancers. All in all, it could add up to two workdays (at least) for me to produce a detailed report.

 

Our office is understaffed as it is. My time is very valuable (please do not underestimate the importance of good administrative support in regards to a large project). If I am to distract from my primary goals to focus on summarizing the research that may or may not be useful for bros, I need to know if it will be worth my time.

Edited by Rebel Virginia
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Does anyone else have a second opinion? If so, speak soon,
 
My work brings me into contact with some of the latest research on these cancers. However, understand I'm not a doctor or a scientist, but merely a humble bureaucrat. Next week I will be reviewing the budgets for various project proposals, during the course of which I will have to also review the scientific proposal. These are some large documents (20+ pages) for someone with limited scientific background. Typically I will only read the highest level information in regards to the science, as my primary focus would be in regards the budgets, organizational structure of the project, and compliance with state and federal regulations (particularly in regards to the use of funds).
 
For me to veer away from this and to give a greater focus on the details of the science represents hours of time for each of these five cancers. All in all, it could add up to two workdays (at least) for me to produce a detailed report.
 
Our office is understaffed as it is. My time is very valuable (please do not underestimate the importance of good administrative support in regards to a large project). If I am to distract from my primary goals to focus on summarizing the research that may or may not be useful for bros, I need to know if it will be worth my time.


If it is a proposal by Thomas Loughran or a person at the Center for Lymphoid Malignancies, Columbia University - might be worth looking at. I'll see the doctor next week, but I am pretty sure NK Cell LGL Leukemia and NK Cell LGL Lymphoma are different from AML/CLL/MDS/B-Cell Lymphoma and the last one you mentioned.
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If it is a proposal by Thomas Loughran or a person at the Center for Lymphoid Malignancies, Columbia University - might be worth looking at. I'll see the doctor next week, but I am pretty sure NK Cell LGL Leukemia and NK Cell LGL Lymphoma are different from AML/CLL/MDS/B-Cell Lymphoma and the last one you mentioned.

Alright. When I review the proposals next week I'll key an eye out for Thomas Loughran and Columbia University. One component we require of the proposals is an overview of developments at other institutions that might be relevant to the projects.

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Alright. When I review the proposals next week I'll key an eye out for Thomas Loughran and Columbia University. One component we require of the proposals is an overview of developments at other institutions that might be relevant to the projects.


Loughran is at UVA, btw.
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