Bleeding Bladder and Bladder clots after 2 rounds of chemotherapy

[abmicro]

Has anybody had this and what did you do to stop the bleeding?

Did chemo in January 2020 but after 4 rounds started having severe blood clots in urine, and had to stop chemo. Had to go to emergency to flush bladder with a 3 way cath and 2 giant bags of water. Peeing was completely blocked with a clot on that emergency visit. Bleeding stopped after that emergency visit and and I stopped Chemo. (Chemo cabazataxel was working great. A shame to stop it).

Restarted Chemo 2 months ago and some of the bleeding came back after only 2 chemo rounds. Had to cut cabazataxel from my 2 chemo agents and go with carboplatin only. I might get 2 more rounds before my bladder clots again and will have to stop all chemo. Will have to go to emergency again for a bladder flush. (Again, chemo was working great reducing cancer and bone pain). I am ready this time since I had a prior experience. I have a self cath ready for to drain some of the urine before I drive to the emergency room. This will prevent the bladder from getting too full while waiting in the emergency room for my bladder flush treatment.

Urology did a camera in bladder and suspects radiation damage to the bladder which was aggravated by chemo.

I want to get up on my soapbox and preach now. I believe damage came from a ridiculous and unnecessary additional "salvage lite" radiation to the prostate area. All I asked for was a necessary radiation to a spot on the upper pubic bone. That was Kaiser in 2010.

Read my story and beware. When you do Radiation, only radiate the cancer that shows up on the scans. Dont radiate other areas that do not show up on scans.

Radiation oncologists have a habit of radiating other areas as an extra measure. You will pay the price many years later with unnecessary bone destruction and damage to internal organs where the beams pass through. These side effects will show up YEARS later. Do surgery if that is an option, or more precise spot radiation like cyberknife instead of wide area radiation. Instead of radiation, or consider options that dont use radiation, such as liquid nitrogen injected into the bone with a needle, or hi frequency ultrasound, if possible. If your bone spots show up on a PSMA scan, consider LU177 which is very targeted and will not kill very much bone. Too much unnecessary radiation will eventually kill a lot of bone, lower your blood counts, and prevent you from doing needed spot radiation for pain in the future. I have nausea daily because of radiation poisoning and low blood counts, and take a Zofran every day.

By the way, I have been fighting my Gleason 8 prostate cancer for 18 years now.

[Tall_Allen]

Your experience was unusual. I read about a trial (link below) where they will be using tranexamic acid to prevent the kinds of bladder bleeding you are experiencing. Tranexamic acid is available now (Lysteda), so maybe you can discuss doing this with your urologist.

clinicaltrials.gov/ct2/show...

Unfortunately, they have to radiate what they can't see as well as what they can see. They found that there is a significant survival benefit to irradiating the prostate in men in whom very few metastases have been found. In addition, irradiating the prostate can prevent urination problems later on. What is unknown is if there is any benefit to irradiating the metastases.

[abmicro in reply to Tall_Allen]

excellent info. will print it and talk to my urologist(s) about this. I have 2 urologists analyzing this problem. This is urgent to fix it so I can continue chemo.

[abmicro in reply to Tall_Allen]

Got opinion about Lysteda from oncology at Stanford. Said they would only put that in my bladder if I was in the emergency room getting blood transfusions from bleeding. Many side effects from Lysteda.

Oncology at Mercy Sacramento said he has put chemicals in the bladder or catharized bladder damage on only 3 patients in his 20 year experience. Asked about Mensa as a pre-chemo infusion that gets to the bladder to protect it. He never heard of it. He said stop chemo, flush the bladder, and let the bladder heal again. Told him if I stop chemo, cancer will run amok in my bones and I die in 1 year. He replied if you have a severe bleeding incident you could die sooner. He said "good luck".

Moved on to get other opinions. Only good info I got from Mercy is that carboplatin will treat bladder cancer if there is any there. Problem may be a combination of radiation damage from 10 yrs ago, some bladder cancer, possibly a little prostate cancer at the bladder neck where I am having urination pain. Scans and camera will tell. Going to Stanford for new scan and a new camera in the bladder for a fresh analysis.

My chemo was been cut to carboplatin only to reduce bleeding caused by using cabazatexl and carboplatin.

[Lyubov in reply to Tall_Allen]

My husband now has chronic blood clot /scar debris / bleeding. RALP 2014; IMRT (& ADT) 2016 for recurrence. Past 6 months+ cystoscopy, camera look-see, etc., 2-1/2 mon Foley, then complete incontinence but still with clots, bleeding. . . Based on what my research finds, I think his bladder is so damaged that it won't heal now ever. The surgery solutions would be too much, I think, for his age 77+ and overall health. . .The urologist does nothing & explains nothing.

[abmicro in reply to Lyubov]

Dont give up on hyperbaric for bladder dammage. It helped me and had no side effects.

[Lyubov in reply to abmicro]

Thanks for this suggestion. No one has brought it up before & I shall look into it.

[CavemanZA]

Keto diet and blend of RS oil and CBD crystals. I make own RS oil, need 1g cannabis a day for at least 2 months takes a while to work up to tolerate that level, I make up my own suppositories.

[j-o-h-n]

I want to endorse your comment regarding the radiation frying you and discovering the damage later....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 5:07 PM DST