Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Sat Oct 8, 2011, 06:11 PM
Darice Darice is offline
Member
 
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
Question Blood in urine?

Is there anything about the MDS that would cause blood in the urine?
Reply With Quote
  #2  
Old Sat Oct 8, 2011, 08:52 PM
donna j. donna j. is offline
Member
 
Join Date: Sep 2011
Location: long island, new york
Posts: 110
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.
__________________
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
Reply With Quote
  #3  
Old Sat Oct 8, 2011, 09:04 PM
Darice Darice is offline
Member
 
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
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.
Reply With Quote
  #4  
Old Sun Oct 9, 2011, 12:43 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
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.
__________________
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/
Reply With Quote
  #5  
Old Sun Oct 9, 2011, 05:52 PM
Darice Darice is offline
Member
 
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
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!
Reply With Quote
  #6  
Old Sun Oct 9, 2011, 08:28 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
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
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
Reply With Quote
  #7  
Old Sun Oct 9, 2011, 08:51 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
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
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote
  #8  
Old Sun Oct 9, 2011, 09:43 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
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.
__________________
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/
Reply With Quote
  #9  
Old Mon Oct 10, 2011, 12:43 AM
Darice Darice is offline
Member
 
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
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.
Reply With Quote
  #10  
Old Mon Oct 10, 2011, 04:41 PM
bebop bebop is offline
Member
 
Join Date: May 2010
Location: Maysville Ga
Posts: 323
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
Reply With Quote
  #11  
Old Wed Oct 12, 2011, 12:00 AM
cathybee1 cathybee1 is offline
Member
 
Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
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
__________________
Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Reply With Quote
  #12  
Old Thu Oct 13, 2011, 10:19 AM
Darice Darice is offline
Member
 
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Blood in urine Fana Transplants 1 Tue Sep 2, 2014 06:54 PM
Today Day 45 but still passing blood and blood clots with urine dhruba_bd AA 2 Sat Apr 30, 2011 11:19 PM


All times are GMT -4. The time now is 05:22 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org