Getting ready for clinical trial - Advanced Prostate...

Advanced Prostate Cancer

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Getting ready for clinical trial

Tonwantonga profile image
25 Replies

I agreed to take part in a clinical trial (S1802) a couple weeks ago, and with that came another round of scans, more blood draws, a chat with a urologist, and a chat with a radiation oncologist. My bone scan had a lot fewer dark spots this time around, and the report said 'mets are less conspicuous'. T is 11, PSA is still below their detection limit, ALP is 67. All relatively good news.

I was randomized into the additional treatment arm of the trial, and I didn't want the prostatectomy so I picked the radiation. This last Monday I spent almost an hour in the gynecologist chair, with an ultrasound wand in my exit port while two ladies poked needles in my perineum. Another day of humiliation, there have been a lot of them. Three tiny gold markers were placed near the prostate, and she was going to put the gel in between my prostate and rectum to help protect my rectum from radiation. However, because of 7 months on ADT my prostate (and testicles, of course) has shrunken, my anatomy has changed, she decided that placing the gel may cause a rectal ulcer, so no gel. I go in next Tuesday for a CT simulation, to see if the markers have moved and to see if I can hold my water long enough for the radiation treatment. I will get my treatment schedule then, should be 5 treatments with a day between each, and it will probably be before the end of the month.

yesterday was birthday number 56, the first one after diagnosis. I'll have to say, much less happy than any other birthdays I've had. But, we soldier on, sexless and hairless.

25 Replies
noirhole profile image
noirhole

I had issues with holding water. When I could hold water I couldn't make it home as I needed to vacate about every 20 minutes. I would plot my course home with McDonalds stops along the way. You can get some drugs to help. Ask about Oxybutyn or Flowmax. Good Luck!

Tonwantonga profile image
Tonwantonga in reply to noirhole

they wrote me a prescription for Flowmax, sounds like I should go down and pick it up before next Tuesday!

noirhole profile image
noirhole in reply to Tonwantonga

Yep. I would get started.

pjoshea13 profile image
pjoshea13

I had to look up S1802, so, for others who are interested:

This phase III trial studies how well standard systemic therapy with or without definitive treatment (prostate removal surgery or radiation therapy) works in treating participants with prostate cancer that has spread to other places in the body. Addition of prostate removal surgery or radiation therapy to standard systemic therapy for prostate cancer may lower the chance of the cancer growing or spreading.

clinicaltrials.gov/ct2/show...

Tall_Allen profile image
Tall_Allen

I'm glad they did transperineal fiducial placement. IMO, you are better off without SpaceOAR. I agree that it is impossible to keep one's dignity intact. Good luck on the clinical trial!

Tonwantonga profile image
Tonwantonga in reply to Tall_Allen

thanks. I hope I get through the radiation treatment without too many side effects, and I hope that being part of the trial will help others down the road. and yeah, I hope it helps me too.

Lulu700 profile image
Lulu700 in reply to Tonwantonga

Stay hydrated from here on out!✌️

middlejoel profile image
middlejoel in reply to Tall_Allen

TA, why don't you like the Space Oar? Doesn't it help separate the prostate rom the rectum? What's the downside?

Tall_Allen profile image
Tall_Allen in reply to middlejoel

Yes, it separates them, but careful contouring and narrow margins on the rectal side are all it takes. The research shows it has no benefit for acute rectal toxicity, but only prevents late-term rectal toxicity. But late-term rectal toxicity rarely happens with modern linacs (fewer than 2% of men experience it, and it is never severe). I call it "a cure in search of a disease," At over $3000, I think it is a scam.

As for downside, my friend had an EPE that didn't show up in scans. The gel was injected into the EPE and pressed the cancer into the rectum, protecting the cancer from radiation. It grew and ate into his rectum, causing him no end of problems to the day he died.

Some ROs I know don't like that it compresses the prostate and refuse to use it.

Here's my analysis of the data:

prostatecancer.news/2017/01...

middlejoel profile image
middlejoel in reply to Tall_Allen

Interesting TA. Thanks for the information of the trial. For me, since the spaceoar is already in my body, it's full speed ahead. Tomorrow will be my first treatment of 5, wish me luck.As I read through the report of the clinical trial, three things stood out.---(1) the trial was conducted in 2012-13, ----(2) the cost of the spaceoar is about $3,000 today, and---- (3) sexual function and long term toxicity is not something that bothers me. Wait till you get to be 84, you will know what I mean.

The trial is almost 10 years old and Medicare now pays for it. Overall, there was no significant difference between the spaceoar and the control group. Considering the time lag of the trial, are the results today still valid? What I mean is----have there been additional trials that show significant differences?

Tall_Allen profile image
Tall_Allen in reply to middlejoel

That was the trial that got them Medicare to pay for it. (Although everyone pays for increased insurance rates due to unnecessary medical procedures). There have been some small studies since, but nothing of that magnitude. I heard that there is a new type of gel on the market that doesn't start as a liquid.

Good luck with the SBRT Who is your RO?

middlejoel profile image
middlejoel in reply to Tall_Allen

Thanks, I go to the City of Hope . My MO is Dr. Doff and my RO's are Dr. Dandapani and Dr. Glaser. Dr. Glaser showed me the spaceoar, it was in a small packet and didn't appear to be liquid.

Tall_Allen profile image
Tall_Allen in reply to middlejoel

I may have misunderstood - it's not something I pay much attention to. I like Tanya Dorff. I haven't met your ROs - COH is a little out of the way for me.

Jordache profile image
Jordache in reply to Tall_Allen

Wow interesting

Anomalous profile image
Anomalous in reply to Tall_Allen

If Space Oar is a scam, perhaps my failed Tulsa-Pro had a benefit. The urologist that implanted my fiducials said he couldn't pry the fibrotic prostate away enough from the rectum to inject the space oar. and consequently i changed to 44 radiation treatments, rather than 20. RO was afraid high intensity would damage the rectum, possibly leading to a cholostomy bag.

treedown profile image
treedown in reply to Anomalous

I had 44, no spaceoar and no fiducials. Just a couple stickers with x's on each side of my body. Apparently they stopped using tattoos awhile ago.

Lulu700 profile image
Lulu700

Congrats getting on the treatment arm of the trial. I’ve been on a trail drug six years with great effects and many bad side effects . I got the flakes of gold as my newlywed bride stood witness. As you said , there goes the ego and all inhibitions out the door. The good news is imrt worked for me and so May it work for you too. Good luck proceeding! Happy b day . I was dxed at 53 and Ill be 60 in a few days . Heal yourself !

PSA680 profile image
PSA680

Feel for you Tonwantonga - tough set of procedures- I thought Prostate biopsy was bad enough - wishing all the luck in the world my friend

RonnyBaby profile image
RonnyBaby

I carried a portable (plastic) urinal in my car for those emergencies - still have it in my car (just in case) they are cheap and very easy to use - and don't leak -the kind they use in the hospital - just a suggestion - I had radiation treatments and hydration needs for months .....

Sir-Peesalot profile image
Sir-Peesalot

Hang in there, Tonwantonga! I've been on Flowmax for 8 years, and it's kept my bladder issues to none. My prescription ran out once without a refill ready, and I was in a constant rush to the Jim (I've changed John to Jim so it sounds like I'm healthy instead of having to pee...). I had imrt on the prostate, then 24 brachycardia seeds, PSA around 2. After two years, they found mets in two places on my spine, so more imrt. That's been at least 5 or 6 years and things remain fairly steady, getting Lupron and Xgeva. In the last year my PSA has gone from 4 to 18, rising most of that in the last 6 months. Bone scans don't show any new mets, but something is going on. Other than being constantly tired, sleepy all the time and resigned to the fact that I'm 77 and this is the rest of my life. They tell me I'm one of the "lucky unlucky ones," thanks, doc for that... Anyway, Tonwantonga, keep the faith and hang in there (again, with Flowmax).

Cooolone profile image
Cooolone

The water protocol is the hardest part! You have to watch your diet too as some foods you eat can impact water retention and bladder fill. It's hard because it's not like you can eat the same thing every day! Good luck though, it seems arduous but goes quickly!

Best Regards

j-o-h-n profile image
j-o-h-n

I guess the nurses forgot to mention that your recent encounter with them was taped for a presentation on facebook and on youtube..... Hope you were smiling.....

Good Luck, Good Health and Good Humor.j-o-h-n Thursday 05/06/2021 8:58 PM DST

Tonwantonga profile image
Tonwantonga in reply to j-o-h-n

does a grimace qualify as a smile? those needles definitely found some tender spots.

j-o-h-n profile image
j-o-h-n in reply to Tonwantonga

Actually grimaces count as long as you're smiling.......😬

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/07/2021 12:31 PM DST

WilsonPickett profile image
WilsonPickett

My heart goes out to you, fellow warrior. I try to keep reminding myself that it could always be worse. That works, but only a little...

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