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Post by fantastic5 on Jul 8, 2015 13:34:22 GMT -5
I have an appointment on July 8th with Dr. Wojno of Emory Eye Care of Atlanta for consultation. I hope he'll be able to safely remove the remaining amyloid. On July 14th, I will be seeing Dr. Jillella (oncologist/hematologist) at Emory's Winship Cancer Center of Atlanta for consultation and lab work (blood and urine test for proteins). Have to perform a 24-hour urine test. Have to collect for a day and keep it refrigerated, but asked if I may keep it 'on ice' in an icechest instead, and Dr. Jillella's nurse said that would be okay. Gotta carry the tinkle jug on ice to Emory, ROFL. fantastic5 Ann, Thank You! What is an immunofixation test? The immunofixation is most commonly performed on serum (blood) and 24 hour urine specimens. We calculate the total protein that you are loosing through your kidneys (you don't want to loose much, protein should not be in the urine in any quantity). Then we use an electric current passed over a gel to differentiate your proteins based on how far they migrate across the gel. The gel is stained and the proteins quantified. We generally break serum and urine proteins into Total Protens, Free Lambda and Free Kappa, additionally Lambda and Kappa that are bound to IgG, IgA or IgM. It is normal to have some of each, but it is a problem when they are 'monoclonal' or all identical. So we report spikes, or clones in any of the above fractions. The reason we check urine and serum is the Free Lambda and Free Kappa are small enough to pass into the urine. So often we will miss a free clonal spike in the serum, but are able to see it in the urine due to the concentrating effects the kidneys have. The opposite is true for bound clonal spikes, they will not pass through to the urine unless there is kidney damage. Not sure if any of this makes sense or not, but we are hoping that you will NOT have any clonal spikes of any quantity. Some people have low level clonal spikes that they simply live with, that don't cause them any long term problems. So the one on the left is normal and the one on the right shows a bound IgM Lambda with a Free Lambda. And now to be very general. When we get the cold, our bodies start making antibodies to the cold virus. These antibodies start out as IgM when we are first sick, then move to IgG (which is considered our immunity to certain viruses, like you usually don't get the chicken pox twice). The IgM and IgG are both made up of heavy and light chains. The light chains are the Lambda and Kappas. So what we are looking at on these gels is the normal distribution of all of the antibodies that these patients have. Because IgG is your immunity to things you have already been exposed to, it is darker (more of them) above the G line. The problem comes, like so many things with our bodies, when certain cells get stuck and either reproduce themselves in excess or in this case, produce too many clones of a certain IgM antibody. In this case the cells are even out of sync, they are producing more of the little arms, or Free Lambda than the cell can attach to the IgMs. So I guess, the moral of the story is don't ask a MT/CLS what an Immunofixation is or you might just get an answer
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Post by gingerkid on Jul 9, 2015 10:48:57 GMT -5
So I guess, the moral of the story is don't ask a MT/CLS what an Immunofixation is or you might just get an answer. Thank You so much for taking the time, Ann fantastic5 for trying to explain what an immunofixation is to the clueless. I think I understand, kinda. Rick and I hope it is localized amyloid/amyloidosis. Ann, can the protein be typed from the biopsy pathology slides? I guess that's the question I want to ask? We're in the dark about the condition, and most of the information we have found is on the internet, other than what Dr. Wojno shared with us yesterday. Emory Winship Cancer Center finally received the biopsy pathology slides. jamesp, I do not know how folks drive in Atlanta every day. It's a scary ordeal. I thought about asking the docs if they would meet us outside the city limits, or if we could rent a helicopter to get to Emory. Enjoyed our consultation with Emory Eye Center eye doc, Dr. Wojno, yesterday morning. He's a sport. He said that there's not much that can be done for amyloid, but he would see if he could remove more of the deposit when he shortens the levator muscle in the eyelid that is causing ptosis in the eye. He said that I would have to be checked for it again, and if the deposits are there, they can try to remove them again. He also requested that I have Dr. Jillella contact him with the blood and 24-hour urine test results and the care I receive under him so the two of them can work together for a treatment plan. I think this is very good! Dr. Wojno will not schedule surgery for me until after he hears from Dr. Jillella. Will see Dr. Jillella next week. and the soap opera continues...
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Post by Deleted on Jul 9, 2015 13:45:59 GMT -5
Getting old is such a pain in the ????? hmmm pretty much everything I guess. lol Glad the stay well gifts make you happy. Happy make healthy. Wishing you the best. Jim jamesp. I did not know that and now you have 9080734509852754387457 more posts than me. Guess I need to get busy with the rocks. I am really starting to believe you have a clone to get half of all that stuff done. Either way, you have done an excellent job of teaching and entertaining since you arrived here. Jim
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jamesp
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Post by jamesp on Jul 9, 2015 19:24:29 GMT -5
Getting old is such a pain in the ?? hmmm pretty much everything I guess. lol Glad the stay well gifts make you happy. Happy make healthy. Wishing you the best. Jim jamesp. I did not know that and now you have 9080734509852754387457 more posts than me. Guess I need to get busy with the rocks. I am really starting to believe you have a clone to get half of all that stuff done. Either way, you have done an excellent job of teaching and entertaining since you arrived here. Jim Never met a Wyomingmen. I had you looking like a bearded goat and was right-just kidding. I sensed you were feisty and capable. Liked the ladies. Learned by the school of hard knocks. And a family man. Love your independence and views from the other sunset. Interesting fellow.
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jamesp
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Post by jamesp on Jul 9, 2015 22:18:01 GMT -5
Almost died trying to figure this out. fantastic5, gracious
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Post by Deleted on Jul 10, 2015 1:22:10 GMT -5
Getting old is such a pain in the ????? hmmm pretty much everything I guess. lol Glad the stay well gifts make you happy. Happy make healthy. Wishing you the best. Jim jamesp. I did not know that and now you have 9080734509852754387457 more posts than me. Guess I need to get busy with the rocks. I am really starting to believe you have a clone to get half of all that stuff done. Either way, you have done an excellent job of teaching and entertaining since you arrived here. Jim Never met a Wyomingmen. I had you looking like a bearded goat and was right-just kidding. I sensed you were feisty and capable. Liked the ladies. Learned by the school of hard knocks. And a family man. Love your independence and views from the other sunset. Interesting fellow. Thank you for the compliment and "old goat" is pretty close. Wyoming is also pretty close but life started for me on a share cropper farm in Montana. Have had the fortune and misfortune to spend some time roaming the planet in many different places (including about 2/3rds of the USA) and hopefully I am not finished with that. I think I still have the fortitude for one more wife but I am a bit concerned that it may interfere (at least a little) with my rocks. Hmmm, maybe I should point out that I am talking about the rocks I polish. I spent a couple of years on the wrong coast just a little north of you in Cherry Point, North Carolina on the Marine Corps Air Base there. I liked the Smoky Mountains to the west much better but I had no choice in the matter. One of my favorite places on the planet was the Sambo Jenkins Grocery in the mountains of Tennessee that my wife and baby son stopped at on our way to Montana. Never will forget it. I can still picture the hams hanging from the ceiling and the smell was delicious. I wasn't getting paid enough to live on so travel was limited to middle Virginia north and Mertyle(sp) Beach South Carolina to the south. Very eye opening two years there for a share cropper from Montana but my wife and I had a lot of fun there. Living proof that you do not have to have money to be happy. Jim
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Post by Deleted on Jul 10, 2015 1:34:14 GMT -5
Almost died trying to figure this out. fantastic5, gracious I figured it out right away. The right one is darker than the left one so the gunk on the left one was less translucent and did not let as much light through it. In rock terms it would be agate on the right and jasper on the left. Easy peasy. Jim
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Post by gingerkid on Jul 10, 2015 8:25:00 GMT -5
Jim @wampidy, were you in the Corps?
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Post by Deleted on Jul 10, 2015 9:55:00 GMT -5
4 years air wing 66 to 70. All of 69 (11 months and 29 days) in VN. Out January 28, 1970. Grumman A-6A hydraulic mechanic. gingerkid are you familiar with the corps? You or family serve? Jim
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Post by gingerkid on Jul 10, 2015 10:51:43 GMT -5
Thank you for your service, @wampidy!
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Post by gingerkid on Jul 15, 2015 6:12:03 GMT -5
Rick and I had consultation with Dr. Jillella yesterday at Emory's Winship Cancer Institute in Atlanta.
Turned in my 24-hour urine sample and they drew 9 vials of blood for testing.
Have a bone marrow biopsy and echocardiogram (TTE) scheduled next week at Emory.
Will not find out test results until the 11th of August.
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jamesp
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Post by jamesp on Jul 15, 2015 7:20:48 GMT -5
So waiting for tests gingerkid. Glad they referred you to Emory, about as good as it gets.
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Post by gingerkid on Jul 15, 2015 10:24:15 GMT -5
Thank you, jamesp! Yes, I agree that Emory is one of the best (not so much fun to get lost at Emory though, lol)! Dr. Jillella believes it is probably localized amyloid, but is following recommendations for testing to rule out that it is not anywhere else. Probably won't have surgery to tighten the levator muscle and remove what can be safely removed of the remaining amyloid in the left eyelid area until some time after August.
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jamesp
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Post by jamesp on Jul 15, 2015 11:19:43 GMT -5
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Post by fantastic5 on Jul 16, 2015 8:15:00 GMT -5
Continuing to hold you in the light gingerkid! As far as protein typing from the biopsy, I think so, but that is not my area. All of those tissue special stains are done by histologists and read by pathologists. If I see one of my rock hounding pathologist friends I will ask him and let you know. Bone marrow aspirates and biopsies are not as bad as they sound. Many years ago I used to assist all of the bone marrows. As a general rule women sail through and always say it's not as bad as they expected. And men, well, most men don't handle discomfort as well as us women .
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jamesp
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Post by jamesp on Jul 16, 2015 8:35:40 GMT -5
Continuing to hold you in the light gingerkid! As far as protein typing from the biopsy, I think so, but that is not my area. All of those tissue special stains are done by histologists and read by pathologists. If I see one of my rock hounding pathologist friends I will ask him and let you know. Bone marrow aspirates and biopsies are not as bad as they sound. Many years ago I used to assist all of the bone marrows. As a general rule women sail through and always say it's not as bad as they expected. And men, well, most men don't handle discomfort as well as us women . Wife says I have nothing but marrow in my head. What does this mean ??
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Post by gingerkid on Jul 21, 2015 11:07:37 GMT -5
Wife says I have nothing but marrow in my head. What does this mean ?? Are you sure she didn't say tumbles instead of marrow, jamesp? Thank you, Ann fantastic5 and James!
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jamesp
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Post by jamesp on Jul 21, 2015 17:35:46 GMT -5
Tumbles more likely, solid bone when she is put out gingerkid.
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Post by snowmom on Jul 23, 2015 5:05:41 GMT -5
keeping you in thoughts and prayers, thanks for the update! Don't know how I missed that for so long....
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