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#1
Wed Mar 28, 2012, 12:27 PM
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spleen pain and swelling
Hello,
Last edited by pastalover : Wed Apr 25, 2012 at 06:39 PM. 
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#2
Wed Mar 28, 2012, 03:44 PM
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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/
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. Last edited by Marlene : Wed Mar 28, 2012 at 04:48 PM.
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#3
Wed Mar 28, 2012, 04:04 PM
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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.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#4
Wed Mar 28, 2012, 06:37 PM
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Thanks
Last edited by pastalover : Thu Apr 26, 2012 at 08:45 AM.
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#5
Thu Mar 29, 2012, 08:39 AM
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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.
__________________
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
Thu Mar 29, 2012, 11:41 AM
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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.
__________________
Nicole, mom to Evan (20); 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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#7
Thu Mar 29, 2012, 12:57 PM
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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
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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#8
Mon Apr 2, 2012, 12:21 PM
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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
__________________
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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