Blood in urine

[Belkin123]

blood in urine lasted 5 days and disappeared as abruptly as it started. Did anyone experienced that? I am taking acalabrutinib for three weeks but I can manage only 100mg once a day due to the side effects - headaches and upset stomach. Is anybody else is taking half a dose?

My blood results are not bad. WBC went up from 100k to 150k, Hgb and platelets are stable on 11.5 and 150 k , my spleen feels softer.

Wishing you all to stay well and safe.

Bella

[lankisterguy Volunteer]

Hi Bella,,

It's good to hear that your problem has resolved. Whenever I or my 94 year old mother get the blood in urine issue reported, it feels like we are chasing ghosts. Lots of tests and all are negative. The doctors eventually give up looking.

-

Len

[Belkin123 in reply to lankisterguy]

Thanks, Len. It is like an idiopathic condition. I am glad that I am not alone with it. Otherwise it is like Are you crazy?

[Newdawn Administrator]

I had microscopic levels of blood in my urine on Ibrutinib but it quickly resolved and I had no other symptoms. I was referred to a urologist but he couldn’t do a cystoscopy because I was on Ibrutinib. The pandemic intervened and it wasn’t pursued but I’d recently had a CT scan and an ultrasound of my abdomen so the urologist wasn’t too concerned.

I was amazed on researching just how common this is on BTK inhibitors.

It’s important however to keep monitoring this and report any visible blood to your specialist.

Newdawn

[Belkin123 in reply to Newdawn]

Thanks, Newdawn. I told my doctor, he is not concerned too much, particularly because my Plt are good, and it resolved by itself.

[Phoeebs in reply to Newdawn]

Hi Newdawn,

Interesting that you couldn’t have a cystoscopy because you are on Ibrutinib. I had one two years ago for the same problem, blood in urine, and was, and still am, on Ibrutinib. They want to do it again as I seem to be having the same problem again, but think it would be a waste of time. Have another phone appointment next month with haematologist so will mention it then, although I do find telephone appointments totally unsatisfactory! Did mention it to my trials nurse last time, but nothing came of it.

Hope you are keeping well otherwise.

Cheers......Phoeebs

[Newdawn Administrator in reply to Phoeebs]

Thanks Phoeebs,

Mine was a passing problem which resolved (I hope) though ibrutinib always seemed to irritate my bladder.

In truth the urologist didn’t seem to know what ibrutinib was so erred on the side of caution.

I’m not comfortable going into any more detail on a post that is ‘open’.

Wishing you well and hope it’s soon resolved.

Newdawn

[MrMidnight]

I had the same problem with traces of blood which disappeared after a few days. (I am on Zanubrutinib). Eventually the haematologist sent me to a urologist after it reoccurred several times.

I avoided a cytoscopy by a using a urine test called CXBladder, available in New Zealand, where I live. All was fine.

[Newdawn Administrator in reply to MrMidnight]

Yes I had a urine test to look for cancer cells (UK) but am not sure if it resembles the CXBladder test.

Newdawn

[Belkin123]

Thank you for your reply, mrmidnight. It is good to know about this test. I will ask my doctor. Good luck with your treatment.

[oztrader]

Hi Bella

I am on a Acalabrutinib Trial started in August 2020 . I at about three weeks in to it had bleeding from left Kidney . Very painful grade 7 or so as the clots came down the Ureter ( Kidney to Bladder ). Anyway to cut a long story short had numerous tests & CT scan etc some under G A to go up into the kidney. . Results were inconclusive will monitor and do CT in six months. Have had unusual bruising on my leg & arm . reduced to a half dose after that no trouble so far since however the team leader said blood issues are likely to always be there . But a half dose is working well . Feel great no energy loss at all I am lucky as many do have that. I believe all the BTK's can have bleeding issues in some people very common . Very happy to be on the Trial and very happy with the drug much better than Chemo which I wouldn't take anyway.

All the very best for your journey .

[Belkin123 in reply to oztrader]

Thank you, oztrader, for your reply. As I understand from all the replies it is not easy to figure out the reason for the blood in the urine. It is good that in many cases the issue is resolved by itself. My question to you is about your half doze on acalabrutinib. Does it work for you with improving your blood counts and lymph nodes?

Do you have have an enlarged spleen?

I have very enlarged spleen, which feels a little bit softer now.

Good luck with treatment.

B

[oztrader in reply to Belkin123]

Hi Bella

My swollen Lymph nodes just melted away within the first few weeks on a full dose . I had three just above on the inside of my left elbow of all weird places Two were large like 1.5 inches long and half as wide , the third was much smaller . Because I could feel and see these I could monitor myself how effective the drug was. I must assume the results on my other swollen glands ( in various places inside the body shown on CT scan some just as big) would have all responded the same including my swollen spleen. As I said they just disappeared incredible ! Because of the bleeding issue I went then onto a half dose 100 mg once a day . My results are still good even though I had to stop the med for seven days in total for the examination up into the kidney under GA .The Trial Team leader when asked mention to me yes people can still gain better results on a half dose but just takes a little longer. My understanding is that drug has a thinning effect on the blood even though my platelets went from in the 70's into the 100 area . The clotting of my blood was excellent around the 70's before the drug but was later when on the drug was still ok but slower.

I have today on instructions stopped the drug for a skin cancer lesion removal on top of my head . Three days before , on fourth day removal and temporary closing of wound ( no GA ) , fifth day nothing sixth day results will be back re checking the margins . If ok will then finalize the procedure and add skin graft . Must be off drug for seven days after graft . So will be off the drug for a total of fourteen days. Starting again two days before next blood test and visit to the Trial Team . So will be very interesting to see the results . The seven days I was off it before weren't an issue at all results still good. My bleeding wasn't in volume but was more where it was coming from and reason why which was the left kidney . Everything in that regard has settled and will monitor with CT scan in six months. I had no other side effects.

All the best

[Belkin123 in reply to oztrader]

Thank you, oztrader for your detailed reply. I am glad that your condition with kidneys improved and half a doze of acalabrutinib is still working. I wish you further improvements and not many side effects. Good luck with everything.

B

[oztrader]

Hi Bella

If needed a cytoscopy is nothing to worry about I have had three now. Maybe a light sedation if worried , one can view the bladder etc on the monitor . Every time results all clear.

[DoriZett]

Hi Bella -

Glad your issue resolved. I am on full dose of Acalabrutinib and 3 years in I had a few months of testing with microscopic blood in my urine. I did have a cystoscopy (not a big deal, no real discomfort) and all looked fine. I think I had a total of 3 urine tests over several months and as suddenly as it appeared, it cleared! No definite answer for the cause was found. Onward!

[Belkin123]

Thank you dorizett, for your reply. How acalabrutinib helped with your blood numbers and lymph nodes?

B