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  #1  
Old Sat Oct 8, 2011, 07:11 PM
Darice Darice is offline
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Question Blood in urine?

Is there anything about the MDS that would cause blood in the urine?
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Old Sat Oct 8, 2011, 09:52 PM
donna j. donna j. is offline
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blood in urine

Because my platelets are low, 13, I have been experiencing bleeding gums. I have heard that if the platelets are low, nosebleeds, rectal bleeding and blood in the urine can can also occur.
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Old Sat Oct 8, 2011, 10:04 PM
Darice Darice is offline
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Blood in urine

Darn it, no. Good thought, though. Had labs Thursday and he was holding his own . . . platelets were good at around 140. His counts seem amazingly good to me . . . I don't really "get" this MDS yet. He is secondary, or treatment-related, which I know makes it more difficult. He has also dealt with bladder cancer (right renal pelvis) but just had a cystocopy, labs, and CT for that within the past 2-3 weeks, so I can't believe something has popped up there again so quickly.
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Old Sun Oct 9, 2011, 01:43 PM
triumphe64 triumphe64 is offline
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It is always possible to have PNH. There is a test for that.

I had bleeding in my urine, and it took me a year to get it all tested and resolved by surgery. I found the hard part was doing a sales job on the urologist to get him to realize any loss of blood was difficult for me to replace. Once he understood, I got some priority with him.
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Old Sun Oct 9, 2011, 06:52 PM
Darice Darice is offline
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Blood in Urine

Would the PNH show up in a bone marrow biopsy? My husband has had two recently . . . mid-March and mid-May . . . diagnosing the tMDS . . . plus numerous previous ones. Would the PNH show up there? Would he be any more susceptible to PNH for having the tMDS? Would it be too much of a coincidence to have both tMDS and PNH? Where is a good place to read up on other PNH symptoms? Just full of questions, aren't I?
Thanks!
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Old Sun Oct 9, 2011, 09:28 PM
Chirley Chirley is offline
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Hi Darice, has your husband had Vidaza? I read recently where they are finding some long term effects of Vidaza and one of those was bladder cancer.

Regards
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  #7  
Old Sun Oct 9, 2011, 09:51 PM
Greg H Greg H is offline
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Hey Darice!

Here's a good place to start on PNH.

I don't think a BMB would reveal PNH, but docs will sometimes look for PNH in an MDS work-up. I think a flow cytometry test is used to detect PNH.

Platelets at 140 sounds too high to result in bladder bleeding.

In PNH, the body destroys its red cells. I think the "blood" in urine from PNH is the hemoglobin released in the destruction. My doc said urine containing lots of hemoglobin is quite brown.

Take care!

Greg
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Old Sun Oct 9, 2011, 10:43 PM
triumphe64 triumphe64 is offline
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It can also be tested for by a blood test. When I started bleeding, I asked to be tested again, and that's how they did it. Your doctor will know the best way for your case.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #9  
Old Mon Oct 10, 2011, 01:43 AM
Darice Darice is offline
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Thanks for all the suggestions and information. The bladder cancer came before the MDS (and Vidaza--and the NHL goes back 10 years . . . that's where the chemo that led to the MDS would have come from . . . also stem cell transplant (auto) 3+ years ago), so we can't blame the bladder cancer on Vidaza . . . he only lasted 3 days of Vidaza anyway.

Yeah, the platelets are way too high for bleeding . . . and he never has had bleeding problems with that . . . even when platelets were around 10.

He has just had this blood in urine one day last week (also once last November which led to bladder cancer diagnosis). He said it was quite red the first time and then got weaker and weaker through the day until it was back to normal. I would be concerned about a recurrence of the bladder cancer had we not just finished cysto and CT to check for that just two weeks ago.

We see our oncologist/hematologist in about a week and a half, so I'll sure have questions for him. I'm thinking to not worry about calling the urologist until after that . . . two weeks wouldn't make too much difference if it is a recurrence of the bladder cancer . . . and I just don't really think that's likely.
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Old Mon Oct 10, 2011, 05:41 PM
bebop bebop is offline
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it could be a bladder infection. my dad had bladder bleeding for a couple of years following a prostate biopsy but stayed infected alot too
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Old Wed Oct 12, 2011, 01:00 AM
cathybee1 cathybee1 is offline
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Did the blood in his urine possibly occur right after a blood transfusion? If so, it could indicate a transfusion reaction. My husband had blood in his urine immediately following a transfusion a few months ago and the lab did a repeat of the cross matching to make sure a reaction to the blood he received hadn't occurred. http://emedicine.medscape.com/article/206885-overview
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Old Thu Oct 13, 2011, 11:19 AM
Darice Darice is offline
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Zebras

Nope, no blood transfusion recently; no bladder infections. Thanks for all your suggestions and help. I guess I have to think that maybe I'm looking for zebras when the elephant in the living room is the darned bladder cancer. I just really, really don't want to have to deal with that again. But maybe it's something simple . . . related to the recent tests rather than a return of the cancer. Like perhaps a nick during the cysto a month or so ago left a scab that popped off and caused some minimal bleeding . . . and it doesn't take much blood to look scary. Guess I'll have to investigate further with the uro. Maybe in another week or so . . . or wait and see if it happens again . . . he's just too tired and run down right now to have to deal with anything else.
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