My platelets are normal, but recently microscopic urinary bleeding was discovered through repeated lab tests. I've been on Ibrutinib for almost a year, and wondering if its likely related. But most Dr.'s say no, since my platelets are good.
Does anyone have insight to this?
I was found to have damage to the lining of my bladder which my docs attribute to ibrutinib. I didn't have noticeable urinary bleeding - I had (still have) frequent, urgent, and difficult urination. The damage was confirmed by cystoscopy.
Was your oncologist worried about this; in terms of continuing, or reducing your g ibrutinib dose? Or is it kinda, 'no big deal'? do you have to do repea ted tests, or anything else to mitigate the situation?
It was not considered serious enough to dose-reduce the ibrutinib. A number of unpleasant treatments were offered to mitigate the symptoms but for now I'm just going to "deal with it". I don't want an endless cascade of more meds and treatments so I've become skilled at finding public bathrooms every where I go.
that's exactly what i would do. Any dietary recommendations anyone offered? I read that potassium-heavy foods like melon and bananas irritate the lining. Also coffee an d alcohol. I drink a lotta coffee, so that's a difficult one to give up for me.
Suz, you don't say what Dr. has done the urine sampling. So, if it wasn't your CLL provider, I at least would call the CLL provider to inquire about possibility in regard do Ibrutinib. And then I would also go to a Urologist, if that is not the Dr. who has done the sampling.
I say both of these actions, as the need to ease up on the worry that not knowing brings. I had several urine samples in a row that showed hematuria (microscopic blood) and saw a urologist who alleviated my fears. I was not on Ibrutinib, however.
Most likely your are among the many who have this to occur but with no apparent cause determined. It seems to be our "normal".
Hope you have the exploration done so the worry or niggle can stop.
Suz - you don't say how microscopic. I have had microscopic blood show in my urine for 17 years - always +2 unless there is infection. I had to laugh when my cat showed exactly the same count recently. Maybe it's the water here???
Thanks, Good to hear, I will look further into the numbers. Glad you are OK. What do you mean by, ''Maybe it's the water here??"
Just joking, since my cat came up with exactly the same number.
Just completed CT and cystoscope to investigate microscopic blood in urine. It is a high concern since I was exposed to Agent Orange and have had prostate ‘99 and bladder cancers ‘03 in years past. Nothing was discovered. I think it is a result of weight lifting and riding upright exercycle. I plan to continue my exercise routine but have ordered a seat cushion. Bottomline, it is not always easily explainable but should be investigated.
Dennis, 72, Navy Diver in Vietnam ‘71-‘72
While even microscopic bleeding can be a signal, and it is good to check the kidneys/bladder to make sure nothing is wrong, it is also possible that it is a benign situation.
When a test revealed microscopic blood a few months ago, my internist was more upset than I was. I had it tested again the following month at Dana Farber, with the same results. My oncologist said that they have seen this reading in some patients on Ibrutinib. Then we looked back in my records and found a similar reading from pre-Ibrutinib, many years ago. She said that maybe this is just the way my body is, with possible minute vessel leakage.
I let go of any concern when I mentioned this to my 54 year old son, and he said that his urine tests also always show trace amounts of blood. We decided that this is a familial feature that we live with. May the same be true for you.
Hi, Suz02–
I was on ibrutinib for about a year and developed extensive bruising. I felt fine, though, and platelets were lowish but stable. Lympocytes and other blood numbers were fine. So I was not concerned. However, a urinalysis during a routine physical showed “moderate” blood in the urine.
My specialist in the US, Dr Bruce Cheson, said bleeding is a relatively common side effect of ibrutinib and reduced my dose. However, another urinalysis a month later continued to show moderate blood in the urine.
He then switched me to acalabrutinib prescribed off label. A urinalysis four months later did not show any blood in the urine. All other bood numbers are spot on. As an extra benefit, all of my bruising has cleared up so I look better, too. I am tolerating acalabrutinib with no side effects worth noting and hope to stay on it indefinitely.
I think that ibrutinib could well be the cause of the urinary bleeding you describe. I agree with the earlier suggestion that you should talk about this with your CLL specialist and perhaps consider alternative treatments. These new maintenance drugs are a long term proposition and a well-functioning urinary system comes in very handy for a happy and long life.
Good luck! Please keep us posted.
Geoff
How do you like the Acalabrut. compared to Ibrut.? How long have you been on it? I've read that the most common side effect is weight gain.
I've been on acalabrutinib for about six months. I like it quite a lot, much better than ibrutinib. All the bruising has stopped. Split and easily torn fingernails are far better. I had been having lots of lower GI problems on ibrutinib, primarily diarrhea. All that has cleared up as well.
Most important, no more blood in the urine.
All blood numbers continue to be normal but they were also normal on ibrutinib.
The only thing I can think to complain about is odd little skin lesions on my face. It's not a concern since my dermatologist gave me a topical ointment that controls them well.
I do not have any weight gain problems on acalabrutinib. However, I know another CLL patient on acalabrutinib who complains about it. I'm not sure what to make of that, though. I see her socially and whatever her weight gain concern might be is not apparent to me.
What country do you live in? In the US, acalabrutinib is approved for mantle cell lymphoma but not yet approved for CLL. It's in the final approval stage with our Food and Drug Administration and approval for CLL is very likely later this calendar year. For now, it's only available through clinical trials or, as in my case, through an off-label prescription by a specialist willing to go to bat for you.
Worth investigating, in any event.
Best of good luck!
Geoff
Treated twice, with a complex clinical history
Glad you are doing so well, and thank you for sharing.
I'm in the U.S. -- so it will depend on if my Dr. can get the acalabrutinib for me.
Urinary tract bleeds do occur on Imbruvica (ibrutinib)... certainly, since the drug can effect platelet function in some people... nothing really to do with the numbers.
This needs to be discussed with your hemetologist as soon as possible... Often it is transient, but my bleeds got to the point I had to get off the drug...
~chris 🇨🇦
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