And the Radiation side effects escalate...

Unfortunately within the last few weeks I have had days of gross hematuria. Not just a little bit but streams of blood when I urinate. Honestly it is shocking to see, especially when blood clots come out with the blood. I guess I have been lucky I haven’t been clogged up and had to go to the ER (prob because I am on flomax twice a day). I just happen to have an apt with my Med Onc. He said it was probably the radiation enteritis acting up. After I left his appointment I continued to have blood for two days during the weekend. I decided to look up who would be the best urologist to go see at UCLA. I ended up choosing Dr Karim Chamie. Because less people were at UCLA, I was in within a couple of days. They also setup a ct urogram for the same day. After consulting with him, he believes I have Radiation-Induced Hemmorhagic Cystitis. This is a byproduct of the radiation treatments. It tends to be a progressive problem and there is not really a standardized treatment plan. He did scare my wife when he said it can progress to a point where I could lose my bladder. He was just trying to educate us on the severity of the problem. This issue has 4 stages and because I already have clots, I am at stage 3. He is going to scope me to investigate the health of my bladder on the 12th. Apparently this happens to about 5% of radiation treatment patients according to the literature.

I can say that I am not shocked this has happened as I have been dealing with so many radiation related side effects. The hyperbaric oxygen treatment is the first line of treatment, however I already did 40 treatments. The doc said we will have to see after the cystoscopy what we should do next.

So onward my friends.... take care. -JR

CaliJR -----

I'm very mindful of you right now, my comrade!

It sounds like you are following the right protocol, and really taking a "down in the trenches" approach.

You are doing your due diligence, and consulting with the experts, and they are definitely helping with diagnostics.

I wish there was a "magic elixir" you could take, that would STOP these side effects in their tracks.

I do hope your doctors will continue to provide guidance and continued expertise.

I also hope that you will experience healing, and a resolution to what you are experiencing.

I am sending 100% of my support. All of us here want the best for you.

Please keep us apprised. We'll keep the front porch light on for you.

Keep posting, and let us know how you're faring, CaliJR ----

In comradeship, from across the miles,
Cyclone - # Iowa State University

JR my husband is having somewhat the same problems, however his major bleeding is coming from the prostate. The radiation made the tissue extremely fragile and will not recover. Hyperberbaric therapy was recommended. He was passing gross blood. He seeing a rad onc also they have his hyperbaric tx on hold for now. Decreasing his blood thinner first. Sorry you have to go though this. Best of luck.

From your signature, what was 40 Tx of Hyperbaric Oxygen Therapy (HBOT)@UCLA for?

Nobody warned me that this was a potential side effect of RT. Radiation is a great treatment option for most people, but it sure can go badly wrong, as in your case. We all regret that this is happening to you. At least you seem to be getting good care.

Here’s hoping that your situation improves soon!

Sorry to hear about these bad SE's from RT. I am assuming this RT is not SBRT? My 5 CyberKnife treatments ended about 10 days ago and my main SE, besides minor nausea, was just discomfort similar to Irritable Bowel Syndrome, or in my case Irritable Lower Bowel Syndrome. Getting up 4-5 times a night and having to visit the bathroom about every hour during the day, many times with no "results". So my neighbor gave me some pot cookies left over from the fight his son-in-law(rip) had with pancreatic cancer. He said only eat an 1/8. I did and all my discomfort disappeared for 2 days. I don't know if mj can knock out the inflammation that the Alieve couldn't, but something was taking place. Am now taking 1/8 every other day and feel like I did pre RT. I haven't told my RO yet. Hope he approves, or maybe he is not allowed to in a "prohibition state".

I know your SE's are many times worse, but might be worth giving it a try.