18 replies to this topic

[hannibellemo]

Happy New Year, everyone!

 

I'm seeing a urologist for a consult next week for hematuria, in my case, microscopic blood in urine. Over the past 2-3 years I've had about 5 UTIs that have been treated sucessfully with antibiotics. (Majority were E. coli for which I thank lovely side effect from Sprycel.)

 

In October while I was vacation I developed the mother of a UTI, frank blood in urine which I have never had, urine looked really disgusting. Treated with Keflex. Never really felt back to normal. Found bacteria in urine right before Thanksgiving, treated with bactrim. Until this last one I've never had a post treatment urinalysis to see if it was totally cleared. The 1st showed no bacteria but "small blood" (that's what the report said and I'm not sure if that refers to amount, size of cells, etc - I forgot to ask) as did the second, 2 weeks later. 

 

One of the side effects noted for Sprycel is hematuria so I could have had this all along but never knew it since this is first post UTI analysis I've had done. Never the less need to have this checked out.

 

Just wondering if anyone else has had experience with this or words of wisdom?

[DebDoodah22]

I have been to my PCP twice with similar issues and yet he won't give me a referral...keeps telling me to drink more water. I did not know this was a side effect,but have had periods of hematuria off and on for 10 years anyway. I had previously suspected the cause was the undiagnosed leukemia. Since on Sprycel, UTI symptoms have increased and I keep asking for cultures and a referral to urology but doc acts like I am overly concerned with urine....tired of this freak show personally. Seems like attention to regular health issues get a back seat. it's like no one wants to help you solve quality of life issues even shortness of breath and chronic evening coughing.

[pegetha]

Pat, when I saw your topic heading, "hematuria," I decided to jump over to the CML forum and check out your post.  This is a problem I've been dealing with for years, but apparently it isn't a very common one.  I have also been plagued with UTI's ever since I developed a blood malignancy.  It's something you definitely should have checked out, but probably is a side effect of the TKI you take, or even brought on by the CML.  The urologist I was referred to did all kinds of tests, including a cystoscopy.  After all of the testing was completed, nothing of major concern showed up.  He came to the conclusion that the hematuria was a result of the fact that I was in the proliferative stage of myelofibrosis at the time, and some of the blood cells were being filtered out and dumped into the urine.  (He gave me a more scientific explanation, but that was my interpretation.  )  In any case, he assured me that it was no worry, but to "watch and wait."  I now periodically have everything checked out, and the answer is always the same, "come back in a year."  Meantime, my UTI's continued to be a problem, until I discovered D-Mannose, which is a white powder extract from cranberries and other berries/plants.  (You can check it out online.)  I simply mix it in my drinking water (it has virtually no taste), and it helps to prevent UTI's.  By the way, I now keep a supply of the little sticks on hand, like the ones that are used in the doctor's office to check for UTI's.  Whenever it shows that I might be developing another infection, I simply double up on the D-mannose for a while.

 

Hope this is of some help.  Good luck, and definitely have everything checked out.  Better safe than sorry.

[DebDoodah22]

Thanks for the lead on the D-Mannose, pegetha.

[winespritzer]

Amazing, had 2 uti's last yr and cardio said it could be from sprycel but onc disagreed.
I had no symptoms,just some blood cells that an urgent care dr and months later, a cardio found in routine urine tests.
This is a wake up call for me to get a urine test and also start up on the cranberry juice again.
Thank you so much.
Winespritzer

[Trey]

While not a normal side effect of TKI drugs, hematuria is a cousin of many of the other "blood leakage" issues associated with TKI drugs.  Its cousins include eye conjunctiva hemorrhage, petechia and so on.  It can be "slippery platelets", but can also be related to inhibition of vascular kinases (VEGF) by Sprycel and to some degree Tasigna, so these can cause hemorrhages and blood leakage through the vascular walls.  This leakage can sometimes occur in the kidneys as the blood is being filtered, resulting in blood in the urine.  Sprycel can also cause additional protein in the urine.

 

Remember also that if someone is more susceptible to UTI the best way to reduce them is to increase external cleaning.  Not implying anyone is not cleanly, just some people need to be extra, extra aware since they are more susceptible. 

Edited by Trey, 02 January 2016 - 10:37 AM.

[Melanie]

The PA to my onc told me years ago that one of the unfortunate side effects of TKI,s are UTIs and to be very careful with my low counts. Drinks lots of water and cranberry juice and to always use cleansing wipes after going to the bathroom. As Trey says, extra external cleaning. I thought this advice from the PA was a good idea and have followed it. Only one UTI in 4 years, where prior I had them fairly often. Maybe it'll work for others. Hope so...they're no fun!

[winespritzer]

Great advice
Thnx
Winespritzer

[Sneezy12]

Anyone with gross hematuria should have a complete urological evaluation, including a Cystoscopy and I.V.P.

[hannibellemo]

Thanks everyone for the posts! Pegatha, nice of you to visit and leave such good advice. I've read about D-Mannose and even mentioned it to one of the GPs in my clinic. She wasn't aware of it but was going to look into it.

 

Trey, you'll make me sound intelligent when I see the urologist on Tuesday.   I've used adult "diaper wipes" since Gleevec. Won't be caught without them - more good advice.

 

What Sneezy says is very true! If you can see that there is blood in your urine get thee to a physician immediately! 

 

I'll keep you posted.

[soundoff]

Hope all works out

[hannibellemo]

I escaped the bullet for 3 months. He doesn't think I am high (or even moderate) risk for bladder cancer so I am going back in 3 months for another UA. If the microscopic hematuria hasn't cleared then I may have to have an IVP and cystoscopy. Not looking forward to the scope, one woman wrote she'd rather go through labor and delivery then have another one of those. Ouch!

[Judithb]

This may not be for everyone, but coincidentally and maybe fortuitously as well, just before I was diagnosed I had purchased a bidet toilet seat which helps a lot with all kinds of cleanliness issues associated with our beloved TKIs.

Worth every penny, in my opinion, for folks like us.

[Gail's]

We talk about everything here, thank goodness! Will have to check out the bidet. Everyone I know who uses one says they're wonderful.

[acl]

We talk about everything here, thank goodness! Will have to check out the bidet. Everyone I know who uses one says they're wonderful.

Gail, I use a toilet bidet and it is wonderful!

acl

[Buzzm1]

My uncle was in charge of an R&R base in England during WW2; he had a bidet installed in a new home he had built on 21 acres in the early 50's.  Of course that was after he opened a sports shop upon his return to sell off all the largess that he somehow ended up with when the base closed.  He was happy about having the bidet.  Come to think of it, he died young of blood cancer .. as I understood it, from an over production of red blood cells; would that be polycythemia?

[simone4]

I escaped the bullet for 3 months. He doesn't think I am high (or even moderate) risk for bladder cancer so I am going back in 3 months for another UA. If the microscopic hematuria hasn't cleared then I may have to have an IVP and cystoscopy. Not looking forward to the scope, one woman wrote she'd rather go through labor and delivery then have another one of those. Ouch!

Pat, escaping bullets is high on my list too.  Glad you didn't have to have an IVP of

cystoscopy.  Anything that I can put off until Spring is o.k. with me.

I'm afraid this is going to be "The winter of my discontent". Hope it is not for you.

Take care.

Simone

[jmoorhou]

I definitely had a chronic UTI....GP suggested D-Mannose, Probiotics (at least 20 billion), Uva Ursi.  I was also having a glass of pure cranberry juice every day.

 

Now I"m down to just D-Mannose, is working.

[Trey]

.....Uva Ursi.......

Uva Ursi is also known as the Middle Dipper constellation.  It is halfway between Ursa Major and Ursa Minor.  D-Mannose is close by.  The constellation shows a tree frog farting out the tune to "Major Tom" in D flat minor.