The verdict is in!

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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/7/2013 8:06 PM (GMT -6)   
Well I spoke with my Rheumy and we went over a few things. He's aware that my ankles are swollen and causing a lot of pain. I told him walking just 20 feet is difficult. Ever since decreasing my prednisone my RA/Lupus has started flaring big, big, big time.

He said that my oncologist brought my bone marrow biopsy results to him and they discussed the results. My oncologist spoke with the oncologists at NIH, and they all agreed that I have Large Granular Lymphocytic Leukemia. This type of leukemia can be seen in patients with RA/auto immune diseases. So they are not surprised to see that I have this.

I will have to do repeat bone marrow biopsy's every 6 months to watch how fast it's progressing. Since I'm unique and special (NOT) I never do anything textbook, so they are expecting my leukemia to advance and change faster than the usual patient with this type of leukemia.

I will meet with my oncologist next Wednesday and I will get the game plan for my treatment. This Friday will be my last radiation treatment on my thumb. So far it's not done anything yet, but I guess we wait and watch now.

Well, other than feeling like a total piece of do do, that's all new here. Daughter will be done with her sophomore year of college next Saturday the 18th. I wish she were staying home with me thru the summer, but she has a job in NYC. At least, she doesn't have to be there until the 9th of June.

Hope you are all doing well and are having low pain days. Sorry I've not posted this week or so, I'm just soooooooo wiped out. I'm guessing it's the combo of the flare and radiation. Take care and be well.


Lois the songwriter
New Member

Date Joined May 2013
Total Posts : 1
   Posted 5/7/2013 10:09 PM (GMT -6)   
Whew...rough stuff Barbara. Navigating this world of multiple conditions is hard enough, but the leukemia is scary. Wish I could say something brilliant and encouraging. I like to write, but I do better communicating face to face. I wish I could just do something that would bring you some comfort; share your fear and your pain in some small way.

My "verdict" just came in today today. After many years of pain and fatigue, the doctor finally diagnosed me with lupus. It's a relief to hear a name put to the struggle. But my doctor really brushed me I'm not really suffering and it's all in my head. I guess having a mental health issue like ptsd and depression means that everything going on in me is just me making it up. Wow. I get tired of fighting this stuff.
diagnosed with lupus 5.7.13; diabetes 5.08; fibromyalgia 3.13; ptsd 2004;

Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 5/7/2013 10:12 PM (GMT -6)   
A known disease! At last a sign of progress. I hope this means things will begin to get better for you, Barbara!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 5/7/2013 10:21 PM (GMT -6)   
Thanks Lois and Lynnwood:

Lois I'm sorry to hear the Dr blew you off ((hugs)), I hate it when they do that. It's common though that we sometimes have to go thru several Rheumy's before getting the right one. Did they offer you anything?

I certainly know how tough lupus can be I've had it for 26 years now. Plus RA and Fibro and other issues. I hope that you can get a Dr that listens to you and treats your symptoms.

Yep, Lynn we have a name now. Guess I now know why I feel so bad. We need to get my RA/lupus under control I'm really flaring up. As for the leukemia I'm guessing chemo will be on my agenda soon.

How are you doing Lynnwood? Hope all is going well for you and I hope you are having nice weather. Very cold and rainy here. Take care and enjoy your week.


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/7/2013 10:41 PM (GMT -6)   
Barbara, I have just one thing to say:

(((((((((((((((((((gentle long hug))))))))))))))))))))))

I'm hoping that they will be able to knock this nasty stuff right out of you.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 5/8/2013 7:33 PM (GMT -6)   
Hi Barbara,
     I ditto Joy's long, gentle hug.  I wish I could be like one of the characters on Star Trek and simply beam up to where you are so I could give you a long, physical hug.  Wouldn't that be amazing if we could travel that way???

Forum Moderator

Date Joined Jun 2006
Total Posts : 1650
   Posted 5/9/2013 7:41 PM (GMT -6)   
Hey Barbara. It's not a good diagnosis to hear, but at least you finally have a diagnosis which means the possibility of treatment. I sure wish you felt better though. You're in my prayers Sweetie. Love Ya, Donna
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