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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Wed Mar 28, 2012, 11:27 AM
pastalover pastalover is offline
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spleen pain and swelling

Hello,

Last edited by pastalover : Wed Apr 25, 2012 at 05:39 PM.
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  #2  
Old Wed Mar 28, 2012, 02:44 PM
Marlene Marlene is offline
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I don't have any suggestion for you on your current condition. Seems to be a fairly complicated case.

Have you looked at the government's website for help in obtaining insurance?

http://www.healthcare.gov/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.

Last edited by Marlene : Wed Mar 28, 2012 at 03:48 PM.
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  #3  
Old Wed Mar 28, 2012, 03:04 PM
DanL DanL is offline
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Pastalover,

I didn't see a diagnosis for you, but I am getting a small sense of myelofibrosis due to spleen swelling or pain on the left side along with a bleeding disorder. I am not sure, but have you been tested for JAK2? If you have this, it is possible you can get in on one of the clinical trials for the JAK inhibitors. They have demonstrated pretty good success at managing spleen size.

There are trials all over the country for these products as they rush to be the first approved drug on the market. Trials usually have most expenses paid for the treatment and follow-up.
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Treated for MDS RCMD with grade 2/3 fibrosis. MUD-Allo transplant 2/26/14. GVHD of the gut, mouth, and skin. started Vidaza 08/18/2014 to fight off possible relapse.
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  #4  
Old Wed Mar 28, 2012, 05:37 PM
pastalover pastalover is offline
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Thanks

Last edited by pastalover : Thu Apr 26, 2012 at 07:45 AM.
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  #5  
Old Thu Mar 29, 2012, 07:39 AM
Lori Patrick Lori Patrick is offline
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Four months before I was properly diagnosed, I had severe spleen pain. I was hospitalized for 2 weeks and didn't receive a diagnosis until I went to a hemotologist. I would not wait to get checked. Good luck with the insurance.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #6  
Old Thu Mar 29, 2012, 10:13 AM
pastalover pastalover is offline
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Hi Lori,

Last edited by pastalover : Wed Apr 25, 2012 at 05:39 PM.
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  #7  
Old Thu Mar 29, 2012, 10:41 AM
evansmom evansmom is offline
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Just be aware that if it IS your spleen that is swollen, you could be at risk for splenic rupture, which of course is very dangerous. Please get yourself checked out somehow.
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Nicole, mom to Evan(16); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #8  
Old Thu Mar 29, 2012, 11:57 AM
Marlene Marlene is offline
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I went back to look at your previous post to find out more about your diagnosis. It would helpful to others if you include it in your post. I came across this article in the Blood Journal on AVWS that may or may not be helpful.

http://bloodjournal.hematologylibrar...7/25/6777.full
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #9  
Old Thu Mar 29, 2012, 03:41 PM
pastalover pastalover is offline
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Hi Marlene,

Last edited by pastalover : Wed Apr 25, 2012 at 05:39 PM.
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  #10  
Old Mon Apr 2, 2012, 11:21 AM
Lori Patrick Lori Patrick is offline
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Pastalover, The pain I had in my speen began as a dull aching right under my left rib cage. It progressed in 4 days to pain that made me double over and apply pressure to the area hurting. Hope this helps. Hugs, Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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