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Post by gingerkid on Sept 2, 2015 17:31:55 GMT -5
roy, is it an immunodeficiency disorder? I hope the docs find out what it is asap so you may receive treatment. I'll be keeping you in my prayers, too! phoenix1647, going through tests and waiting on test results can seem like it takes forever, but please know we're all rootin' and praying for you!
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phoenix1647
starting to spend too much on rocks
Member since March 2013
Posts: 186
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Post by phoenix1647 on Sept 2, 2015 19:16:40 GMT -5
CANCER UPDATE;
I had my first visit with my cancer doctor today. The good news is: I do NOT have leukemia. The doctor looked at aall my lab results and the bone scan and said it is not leukemia but she does not know for sure what it is yet. She ran some more blood tests and did a load of X-rays and I will get the results at my next visit on Sept 14th. The doctor said she does not think it is something real bad but won't know for sure until lab results are in. She did say I have some sort of protein in my blood but it is not in a large amount so far. Will keep you posted. Thanks everyone for your prayers and thoughts.
My cancer doc said she has no idea why my primary care doc would say it was leukemia. I will be having a little chat with my doc about that.
Roy, please keep us posted on your case. Waiting for test results and hearing from doctors can be hell.
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Post by rockjunquie on Sept 2, 2015 20:25:00 GMT -5
That sounds like good news to me!
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Post by gingerkid on Sept 2, 2015 20:58:45 GMT -5
That is excellent news to hear, phoenix1647!!! I am not a doctor, and I just wanted to suggest to you to please ask your doctor to check you for amyloid/amyloidosis since you said your doctor noticed proteins in your bone marrow ETA: correction - blood. I have amyloid that is the 'localized type' in my upper left eyelid around the levator muscle. I plan on having the remaining amyloid surgically removed and having the lid lifted soon. From what I understand, localized amyloid is caused by plasma cells that form within tissues, etc., and the other types are caused by abnormal proteins which form in the bone marrow. I had an orbital CT scan last year, 2 MRI's (orbits and brain), and an orbital tissue biopsy. The biopsy was stained with Congo red which showed apple-green fluorescence. which confirmed it was amyloid. I recently had a bone marrow biopsy, blood work, and 24-hour urinalysis at Emory's Winship Cancer Institute to make sure proteins were not in the bone marrow, urine, or blood and to confirm there were not any primary or secondary causes of amyloidosis. It is not very common, and can be misdiagnosed. Here's a book on amyloidosis: www.amyloidosissupport.org/AmyloidAware_Booklet.pdf Keeping you in my prayers!!!
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phoenix1647
starting to spend too much on rocks
Member since March 2013
Posts: 186
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Post by phoenix1647 on Sept 6, 2015 7:39:21 GMT -5
Right now, I am still waiting for lab results. This waiting part is not fun.
Still doing a lot of research trying to learn as much as I can. So far, the cancer doctor is still thinking monoclonal gammopathy(?) not sure about the spelling on that.
Will post more as soon as I can get the info.
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Post by roy on Sept 6, 2015 10:34:56 GMT -5
Right now, I am still waiting for lab results. This waiting part is not fun. Still doing a lot of research trying to learn as much as I can. So far, the cancer doctor is still thinking monoclonal gammopathy(?) not sure about the spelling on that. Will post more as soon as I can get the info. i hope it turns out well for you so far the worst has been dropped off !so sounds better than the first diagnosis
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phoenix1647
starting to spend too much on rocks
Member since March 2013
Posts: 186
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Post by phoenix1647 on Sept 11, 2015 7:31:36 GMT -5
UPDATE Sept 11th.
All test results are in. I have read then and not sure what it all means. I have an appointment wit the cancer doc Monday morning and will get all the answers and more information then. Will keep ya posted.
Some of the words they used in the lab results are:normocytic normochromic anemia w/poikilocytosis....spherocytes, burr cells acanthocytes, leukocutes... eosnophilia, toxic neutrophils, lymphocytes, and monocytes.
After reading all those big words, I had to get a cup of coffee and let my head stop spinning! lol
I will post the Englist transulation Monday after the doc visit.
Keep on rockin'
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Post by roy on Sept 11, 2015 9:58:07 GMT -5
think happy thoughts!
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Intheswamp
Cave Dweller
Member since September 2015
Posts: 1,910
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Post by Intheswamp on Sept 11, 2015 10:38:44 GMT -5
I'm a newbie here, pho, but I will put you in my prayers. I started reading and the situation has only improved...it was kind of like I saw prayers answered as I moved through the posts. You've got a great attitude and the cancer doc has put strong doubts towards the leukemia diagnosis...things are looking *up*!!!! Ed
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Post by rockpickerforever on Sept 11, 2015 11:33:31 GMT -5
Tom, we're all rooting for you, hang tough!
Sending prayers and well wishes to you and your family.
Jean
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