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Posted 4/15/2023 9:08 PM (GMT 0)
Had SBRT over a year and half ago and developed strictures. I had a long post about this ending with my having a balloon dilation which thus far has opened me up.
The procedure was about a month ago and I had hematuria after and before up until about 10 days ago. My flow is very good with occasional urgency incontinence where I just miss making it to the bathroom. Therefore when I get the urge, it's best to get my self to the bathroom ASAP.
Yes I'm pleased but understand strictures can return.
Well sad to say that the hematuria is back. First time it was not much but now it's bright red blood.
Being on Xaralto doesn't help so I may switch to Eliquis which is slightly better as far as bleeding issues.
Still have soreness that has not gone away.
I'm pleased with the flow rate and not very concerned about hematuria except how it might relate to the stricture.
I'll not post too much unless my flow rate changes. See the specialist again on the 25th and will get a better idea of what is going on.
I suppose if it becomes a problem again maybe he can treat with Optilume or do something short of a full uroplasty.
For now I'm okay as long as I'm able to void and I'm doing very well.

Glen
Posted 4/16/2023 7:37 PM (GMT 0)
Twenty four hours and pretty clear again.
Hoping it was just some kind of flair up.
Hoping that the specialist can ease my mind.
The balloon he used to dialate was 4cm so I'm hoping that the stricture was of equal size and maybe smaller.
My hope is 3cm which would just make it eligible for Optilume treatment.
Maybe I'm grasping at straws. Knowing the success rate of dilation is not great, I cling to anything else short of full surgery to heal this.
Glen
Posted 4/17/2023 2:43 AM (GMT 0)
Darn! Its back and very bloody with clots. Drinking water and taking cranberry pills as well as extra C

See doctor next Monday
Just tired of this ordeal and of course hope it is normal. I was so happy when the blood stopped.

Hoping for good news next week

Glen
Posted 4/18/2023 3:35 PM (GMT 0)
Off then on again.
I guess this is how it's going to be. I think wish I understood stricture. My guess is once irritated it just doesn't heal.
Optilume places an anti cancer drug that inhibits tissue growth. I'm really hoping my stricture is 3cm which is the maximum size for the use of Optilume. I think the drug is Taxol which comes from the Yew tree.
Right now my flow rate is pretty good and that's my focus.

Glen
Posted 4/18/2023 5:57 PM (GMT 0)
Glen, I was so hopeful that you were done with the stricture problems.
I am so sorry and all I have is continued prayers for you. Hang in there you will find the answer and conquer this !
Posted 4/18/2023 7:20 PM (GMT 0)
Thanks actually I'm okay. Yes I am worried but as long as I'm able to void, I am not concerned about blood per se other than it may be a harbinger of damage.
I'll ask if it's normal to bleed and if so I'll be fine with it.
Glen
Posted 4/20/2023 11:27 PM (GMT 0)
I'm back to near normal with no hematuria but with soreness and some urgency.
I'm perplexed at this. How can I bleed and have huge clots then return to normal?
Does the scar tissue just decide it is irritated and start bleeding? How does it decide to heal?
Again I say I can live with it but do so want to know why.

Glen
Posted 4/23/2023 4:07 PM (GMT 0)
See Dr Joice tomorrow and will ask him all about my symptoms.
If hematuria is a normal by product of the dilation, I'll be okay with that.
Most important to me is the size of the stricture. If it's three inches I am eligible for the Optilume treatment.
Just closing the stricture is not always good. The tissue must be treated to prevent regrowth of scar tissue.
I see him 5pm tomorrow.

Glen
Posted 4/23/2023 8:59 PM (GMT 0)
Sorry to hear of your stricture issues. That sounds hard. I don't know where you're located. There are referral hospitals for those dealing with serious side effects from treatments.

My treatments were at Vanderbilt, in Nashville, back in 2013. They're a regional referral hospital, and at least back then were well-versed in treating such side effects.
Posted 4/23/2023 9:04 PM (GMT 0)
Sorry to hear of your stricture issues. That sounds hard. I don't know where you're located. There are referral hospitals for those dealing with serious side effects from treatments.

My treatments were at Vanderbilt, in Nashville, back in 2013. They're a regional referral hospital, and at least back then they were well-versed in treating such side effects.

Good luck, and I hope the symptoms improve.
Posted 4/24/2023 1:39 AM (GMT 0)
I had SBRT at Columbia Presy in Manhattan

My specialist is also with Columbia a Dr Joice. I see him tomorrow

I am back to bleeding again today but then it stopped! It is just weird how it just does not want to heal

Glen
Posted 4/25/2023 12:32 AM (GMT 0)
Oh my gosh! I drove fifty miles to see Dr Joice because for some reason he keeps office hours North of Manhattan in Tarrytown NY
I have a place in Wappingers Falls NY and drive to see him. I get to the office and whoops! The appointment is tomorrow.
Well it is a lovely drive.
Actually wonder if a phone call would have been easier.

Glen
Posted 4/26/2023 2:49 AM (GMT 0)
Well it was actually only forty miles!
Doctor is pleased with how things looked and wants to take a look in about six months to a year.
He said the bleeding while not usual may be directly related to me taking the Xaralto blood thinner. I may get into a clinical trial of a new safer thinner but even if I do not use the new drug, the blind drug is going to be Eliquis which has a slightly better bleeding profile so it's a win-win. If I do not get into the trial, I will ask to switch to Eliquis.
Right now there is no bleeding but even if it begins, I am okay with it as long as I have good flow.
He will look into Optilume and will call the company that makes it to see if I fit it's use.
That would be in the event that I get closed up again.

So for now there is no point in posting unless I start to close up.
End of Story!

Glen
Posted 5/11/2023 11:28 PM (GMT 0)
Update.
I got on the clinical trial and will begin either
Eliquis or the trial medication both have lower incidents of bleeding.
Good news is since last report I've had no hematuria and have a good flow rate.

Glen
Posted 5/12/2023 12:15 AM (GMT 0)
That is good news, Glen. Keep us posted.
Michael
Posted 5/12/2023 4:55 PM (GMT 0)
Thank you
I'll post if anything from.
I'm focused on my elbow replacement surgery failing. Arm hurts worse than before the surgery and it is unstable. It rock's back and forth.
Gotta say I really don't want revision surgery but have no choice. Seems that the acrylic cement was absorbed by the humerus bone and caused the cement grouting to fail.

Glen
Posted 5/16/2023 1:35 AM (GMT 0)
The clinical trial people are sending a nurse to do an EKG and draw blood and soon I'll start the trial of a new blood thinner. Both are supposed to be less harsh as far as bleeding events so it's a win, win.
No hematuria so far since the dilation.

Glen
Posted 5/21/2023 8:12 PM (GMT 0)
Still doing well with no hematuria or reduced flow rate.
Not getting the new blood thinner yet but it's a long trial of up to thirty months.
I realize I'll be saving a lot of money because my copay for Xaralto is a couple hundred dollars a month. That's not the reason I've joined the trial but a great side benefit.
On another issue, I have to have revision surgery on the elbow replacement. I have better range of motion but the pain is worse than before the surgery.
The acrylic grout cement was absorbed by the bone allowing the humerus bone to wobble.

Glen
Posted 5/22/2023 2:31 PM (GMT 0)
I'd add that I'm still having burning and pain upon voiding but my flow is good which is my main concern.

G
Posted 6/7/2023 8:15 PM (GMT 0)
I start the clinical trial Friday and will be on either Eliquis or Asundexian.
It's a win, win because I was going to switch to Eliquis because of the stricture and it's better bleeding profile.
Now not only will I get the change but I'll no longer have the big copay for the blood thinner. Saving about $150 a month and the trial may last 30 months.
Plus! Wow a $100 gift card every few months for being a good guinea pig.
Posted 6/17/2023 11:38 PM (GMT 0)
Still doing well and I'm on the clinical trial of either Eliquis or Asundexian so there's been no bleeding and as said I have good flow

Glen
Posted 6/18/2023 3:04 PM (GMT 0)
I'd add that I've got better control of urgency. I still have to go often but have not had any leakage. I've stopped using the depends on the train ride.
Flow is much better.
I guess I'm just hoping that the other shoe doesn't drop and the stricture comes back.
I guess it's been a couple of months.

Glen
Posted 6/18/2023 3:12 PM (GMT 0)
Glen, making progress. 👍
Posted 6/18/2023 3:51 PM (GMT 0)
Yes thanks mattam.
I so very much want the dilation to work. Heck maybe it will.
Right now my failed elbow replacement surgery is really, really bad.
I can hardly stand the pain so it takes up a lot of space in my head.
At the same time I want to enjoy the Summer and kinds want to put surgery off until September. I see doctor on the 29th June then have to have cardiologist and primary approval appointment's so it will take time. I'd add that the doctor is taking weeks off in July so who knows when it'll be scheduled.
I have serious dental work planned need implants so there's that too.
Wish I was younger and taken better care of myself. Stinks getting old but the alternative? Not yet!
Glen
Posted 6/18/2023 4:22 PM (GMT 0)
Glen,
Yeah, you do have a lot going on. But, you seem to be taking it in stride. I'm watching the Monkees reruns this morning. An episode with Lon Chaney jr and Uncle Leo playing gangsters. Pretty hilarious for me, even now. I tend to watch the old shows. I guess they remind me of better times.

Well, I'm rambling. Have a good Sunday.
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