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Pretty in Pink...pee that is


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#1 jjg

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Posted 15 September 2011 - 02:49 AM

Yesterday morning I noticed my pee was pink...yay! No other urinary symptoms. I am currently recovering (slowly) from a sinus/chest infection and the antibiotics in combination with G have caused some pretty frequent bathroom activities but not in the urine department.

We did my regular bloods as well as a urine test and ultrasound (kidneys, bladder & urethra). Everything was normal except, not surprisingly there were a heap of RBCs in my urine (just usual no. of WBCs so no infection). The RBC in the urine were not damaged indicating (apparently) that there is no inflammation of the kidney. The blood tests showed my highest platelet count since diagnosis - 184.

I had pink tending to dark red pee all yesterday but this morning back to normal. They are going to send me to a urologist just to be sure...apparently he will take another look at the bladder which sounds like fun but basically my hem did a shrug maybe it's a G thing. Well has anybody here had a similar experience while taking glivec or any of the other TKIs?

I have had a similar experience but with much less blood after running a half marathon...I can only wish I felt well enough to run a half yesterday morning but sadly this was not the cause.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#2 Pin

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Posted 15 September 2011 - 04:47 AM

Cripes - that's gotta be scary! Glad it didn't hang around for long for you.

I had some trace urinary RBCs not long ago when I was being tested for pelvic region pain. They thought it was kidney stones, but turns out it wasn't and is *possibly* ovary-related. I still get weird pressure/pain down there though, of which I am not sure of the cause, so I do wonder from time to time what the heck is going on in there.

It's interesting you say that it has happened to you before though - I wonder if it is your body's way of coping with something? But I am real interested in what you find out about this...


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#3 JoshLee

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Posted 15 September 2011 - 10:01 AM

I am taking Tasigna and have been experiencing a frequent urination and pelvic region discomfort and pressure. I went in for a urine test this morning and I am sure I'll get the results at some point today. Just praying that it's nothing too serious. No visible blood in the urine, but that doesn't always mean it's not there I guess. We'll see what happens.....



#4 Guest_billronm_*

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Posted 15 September 2011 - 04:00 PM

Dear Jig,

I'm 4 years since dx. I was on G 3 and 1/2 years I was plagued by uti infections sometimes 2 a month. My pcp was giving me cipro which helped while I was on it. Then they found out cipro and G don't go well together, so I took pennicillin after that. Pcp and Onc wanted me to go to a urologist I did not go. Every time I go to a specialist they find something so I didn't want to hear anymore or go through anymore. In Oct. I took a 5 week break from G then I went on Sprycel around Thanksgiving and I haven't had a uti since. I drink a lot of cranberry juice (sometimes I throw in a little vodka) but I've been fine since going off G. Must be the Vodka.  Sincerely Billie



#5 Susan61

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Posted 15 September 2011 - 09:00 PM

Hi:  It is good to see a Urologist to have it checked out.  I never had this problem with my Gleevec, and my blood counts are always on the low side.

My husband has had the red urine, but he has kidney stones.  The stones never bother him, and he would not even know they were there except he had a test a few years ago for something, and they saw the stones.  I hope all turns out fine.

Susan



#6 jjg

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Posted 15 September 2011 - 10:28 PM

Thanks for the replies guys. I had about 40mins of pain last night in what I think was the left kidney - back and side under at the bottom of the ribs - with nausea. Nausea is nothing new in me (although it's never too bad) and I do occasionally get muscle cramps but this hurt inside me. I could just walk but not easily. Of course it started just as I had to walk 15min on my way home and after about 10 mins of slow walking it started raining which didn't lighten my mood any. I sent a txt message to my hematologist and she said maybe kidney stones but go to emergency if it gets worse. Fortunately the pink pee, the pain and the rain are all gone today but now I have something more to talk to the urologist about.

Susan does your husband ever have anything like that?

I have to say my hematologist is bloody user friendly (pardon the pun): I rang in the symptoms to her clinic (it was her day off), she rang me back, organized all the tests, when the fax machines didn't work she re faxed, got the results, checked them out with a urologist, rang me with the results, asked the urologist's office to make an appointment for me (which I'm still waiting for) and then still answered my txt message at 7pm. All that and I'll never pay her for any of it. I would if I could but in our system there its hard for her to charge me unless she sees me. I'm sure she has lots of patients more sick than me but I am never made to feel as if my problems are trivial.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017





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