Radiation Starts, Bye Bye Urethra?

[mababa]

D-Day arrives August 6th for IG/IMRT. Two very kind and empathetic technicians attend to my placement on the treatment bed. Lasers aligned, they leave the room and this giant green machine (which I had not previously met) begins whirring and gyrating about my torso with beeps and clunks. I sense that this is not a late-model linear accelerator. After ten minutes of lying very still and trying to appreciate the country music being piped into the room, the attendants return full of compliments about the fullness of my bladder and emptiness of my rectum. I guess they can see all my innards on their screens as the machine goes about its business. Afterward, I have this odd warmth in my gut. I decide that it could be the barrigel spacer heating up after absorbing some photon energy.

After day two, arriving home, I find I can barely pee. I make it through the night and report the issue with some alarm at the next RT session. The nurse reports this to my RO who calls me upon my return home. She says that much inflammation of the urethra after two treatments is unusual. She has ordered a prescription for tamsulosin (Flomax) which I retrieve asap. Three hours later my urethra begins to function again. My concerns about damage to the urethra from RT are being validated. I'm beginning to question whether I can complete the 28 RT sessions prescribed. If the Flomax becomes inadequate to deal with the inflammation, what's next?

I'm on day 8, 20 more to go. I'll be checking in with my RO later today about how bad this might become for my urethra. Right now, today's treatment is delayed because the contractor installing the NEW linear accelerator has accidentally cut power to the hospital. (A timely call from one of the technicians saved me from a needless 90 minute drive.)

Pill wise, I'm still on the daily Orgovyx, have added blood pressure meds (a game changer), and Flomax. PSA in June: 0.71 and T: 25; August: 0.87 and T: 22. (RO said not to be concerned about the uptick in PSA, but somewhere under her breath I thought I heard her mention that my MO might want to add abiraterone to the mix.)

There you go, some real-time updates on my experiences and progress in battling PCa.

[Kaliber]

hang in there brother .. keep whack-a-moleing ….. i hope everything eventually goes well And you get on with things. Even a cath or temp drain aren’t “ All that “ in the scope of treating terminal cancer….. those eventually disappear and become just a memory on your journey. Bush wishes big guy …

❤️❤️❤️

[Derf4223]

You definitely should consider an ARPI like abiraterone. Abiraterone is cheap, comparatively speaking, being available in generic form -- no insurance cost ~$100/month. I used Scriptco.com but there are other sources.

[vintage42 in reply to Derf4223]

"Abiraterone is cheap... being available in generic form -- no insurance cost ~$100/month."

I think that is for 250 mg pills, with 4 pills being the therapeutic dose. Under my insurance plan, the Blue Cross Medicare Prescription Drug Program, my 4 pills are only $75/month. But the plan is paying $5,000/month for the drug! I wrote them asking why they were paying so much for generic abiraterone, and they retaliated by disenrolling me. It took a frantic month to get back in.

[mababa in reply to Derf4223]

From what my RO has told me, I will likely be put on Abiraterone after my next MO appointment. I believe Medicare will cover the cost.

[Derf4223 in reply to mababa]

Medicare -- abiraterone is a tier 4 med. There _will_ be a co-pay. My first abi co-pay was over $3K. The next was capped at a bit over $1K. The rules changed recently though.

[mababa in reply to Derf4223]

Sounds like what I went through with Orgovyx. If it's started this year, I believe I've already hit my max out of pocket. Come January, there'll be some big bills for a while.

[Jpburns]

The uptick in your PSA (you’re getting it measured during treatment?) may be due to the dying cancer cells shedding PSA. By the way, my linear accelerator (a TruBeam™️, ask for it by name…) made all sorts of clicks and moans at it assumed the various positions. It’s probably fine.

Trubeam

[mababa in reply to Jpburns]

My most recent PSA/T was measured the day before starting RT. And my machine looks like your cartoon but is a "Varian Clinac iX." A 2004 introduction date. Not sure if that's considered vintage or not. I'll ask if it has had a "tune-up" at my next encounter.

[Tall_Allen]

It is unusual to have that reaction just 2 treatments into it. You may want to discuss getting a PROSTOX test:

miradx.com/prostox

Because of your cancerous pelvic lymph node, you will also need 3 years of ADT and 2 years of Zytiga without vacations.

[mababa in reply to Tall_Allen]

Everyone tending to me agrees it's unusual. Hasn't mentioned a PROSTOX test. She's wondering if I have a UTI--nope, I do not. If the condition worsens, she says I could double the Flomax dosage and also add ibuprofen to the mix. Hopefully, the level of inflamation will hold steady and I'll get through this. But, I'm going to ask her about verifying the RT dosage being administered. Re ADT, yep. I've resigned myself to staying the course and anticipate starting Abiraterone in Sept. Interesting thing re the Orgovyx, almost coincident with starting on blood pressure meds, presently, I'm not feeling the same level of side effects anymore. The hot flashes have ceased and fatigue has diminished. It's almost like I'm off the drug. I used to dread taking that pill, but now, nothing.

[Tall_Allen in reply to mababa]

Why wouldn't you discuss Prostox with her? I suggest emailing that link to her now.

[mababa in reply to Tall_Allen]

Interesting that a genetic test can be done to measure a person's susceptibility to post RT unrinary tract problems. I couldn't find just how the information can be applied to adjusting RT, or how it might guide the administering of the RT. I'm wondering if my RO would know what to make of it. Would the RT doses be reduced or configured differently to lessen deleterious impact or would a different type of RT be called for. I'll email it to her and see what she thinks. Thx T-A!

[Tall_Allen in reply to mababa]

send him this too:

ascopubs.org/doi/10.1200/JC...

[mababa in reply to Tall_Allen]

👍

[Jewelrylady in reply to Tall_Allen]

I have not heard of this test. I read the link you posted and I’m wondering if this test can be done for men who only had radiation and no surgery. Also, is the test done before you’ve started radiation, or is it done after radiation. Thanks.

[Tall_Allen in reply to Jewelrylady]

Yes, it is done before radiation to help decide on fractionation. There is no point afterward.

[Cp014]

thank you the update.

[vintage42]

I would be afraid to continue IMRT with such a urinary reaction and so early. Something must not be right with the machine, the program or you. I had 30 IMRT without gel in 2021, with no sensations or side effects during or since.

[Mgtd in reply to vintage42]

Yep me too! Flomax worked wonders for me. Back to normal.

Hang in there!

[mababa in reply to vintage42]

If things worsen, I may plead for a pause in treatment. But it does unnerve me to a great extent. My program is 28 hits of the IMRT. 20 more to go.

[Omalley]

I had Proton and 3D conformal radiation in 2009, in 2022 I had to have my urethras relocated on my bladder since they were scared from the radiation. No problems up to that time, I had had several kidney stone removals which aggravated the situation I think. Bottom line I seem to be fine now, little different urinary urgency. I would be real careful if you are already having problems, like I said I had no problems at all with urination during radiation. I guess 15 years relatively problem free is a good thing.

[mababa]

15 years is very good. Bravo! As the Italians say. I hope to do likewise.