Radiation treatment 5 days a week - Advanced Prostate...

Advanced Prostate Cancer

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Radiation treatment 5 days a week

DarkEnergy profile image
40 Replies

Hi,

I'm having radiation treatment to prostate 5 days a week, from Dec 14th to Jan 21st.

I'm like holy ripe guacamole Batman, this is extreme. Asked the Doc, is this a last resort punt? The Doc said, no, not at all, it's treatment strategy based on recent clinical trials that demonstrated continuous radiation targeting the prostate cancer has increased overall survival.

You know what, I never liked this "Overall Survival" metrics, anyway had a good discussion with the Doc and grateful that I'm getting treatment from a "recent" clinical trials study.

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DarkEnergy
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40 Replies
CAMPSOUPS profile image
CAMPSOUPS

You sir your "DarkEnergy" avatar always perks up my ears (well my eyes here at the laptop) as you are one of the few like me with high PSA and met load at dx.Your journey has been and now continues to be remarkable (who would ever imagine someone with high PSA and met load at dx would be offered a break from ADT).

Now this. The blasting of your prostate. I will be following with interest your continued journey.

Thanks for your frequent posting.

DarkEnergy profile image
DarkEnergy in reply toCAMPSOUPS

Hi there, yes the dx of PSA 1000+ and pelvic scans looking like a Universe of infinite Stars was a reality blast of dismal outcome!

Fast forward, I've learned my prostate cancer was extremely hormone sensitive, and the Stars, eventually looked like scramble eggs from treatment.

So, my cancer is not progressing at the moment, but we know they do evolve in their quest of killing the host.

The blasting of my prostate cancer is based on recent clinical trials for favorable outcomes, the cancer is slow growing, so a "reset" of living survival was rebooted, I'll take this and move forward to the next battle!

Tall_Allen profile image
Tall_Allen

Radiation to the prostate only increases overall survival if there are 3 or fewer distant metastases (don't count pelvic lymph nodes) on a bone scan/CT. If that is your situation, the recent trial he is talking about used radiation to the prostate in either 6 total treatments (once a week for 6 weeks) or 20 daily treatments (weekdays for 4 weeks).

prostatecancer.news/2018/09...

DarkEnergy profile image
DarkEnergy in reply toTall_Allen

Hi TA,

Summary from Progress Notes:

"Treatment Intent: Radical Oligomet (<4 mets)

Concise Clinical History: 61yoM w/ GS4+4 10/2013, met PCa involving RP and pelvic nodes, PSA>1000 9/2018 s/p ADT,Zytiga,taxolx6 now w/ PSMA-PET avid L scapula lesion + prostate/pelvic LN. SBRT->prostate/node RT (Nguyen). MO: Pomerantz.

Overall Oncology Management Plan: SBRT to L scapula followed by prostate/pelvic node RT with Dr. Nguyen"

It seems there's subjective bias regarding pelvic LN metastasis: considered localized or systemic disease.

Tall_Allen profile image
Tall_Allen in reply toDarkEnergy

It's not bias, it's definition. Pelvic lymph nodes are stage N1 (regional), while lymph nodes in other places are staged M1a (distant). Only M1 metastases on a bone scan/CT are counted towards the 3 total.

Javelin18 profile image
Javelin18 in reply toTall_Allen

I have just a slight understanding of transition to metastatic disease, so perhaps you can shed some light. It’s my understanding that distant metastases occur after the cancer has undergone epithelial mysenchimal transition (EMT) which allows the cells to escape the prostate and move to other receptor sites.

It seems to me that, since lymph nodes act as filters for local organs, cancer could end up in local lymph nodes without EMT. That’s why there’s a distinction between local lymph node metastases and distant metastases.

Is that a correct understanding?

Tall_Allen profile image
Tall_Allen in reply toJavelin18

No. EMT is what allows cancer to leave and survive outside the prostate - in bone, in organs, around nerves, and in lymph nodes. The live cancer cells are carried away in blood, in lymph, and around nerve sheaths. While dead cancer cells (that have not undergone EMT) are sloughed off, they are quickly excreted. Live cancer cells that have not undergone EMT lack motility and lack the ability to survive outside the prostate. Live cancer cells that have undergone EMT may get caught in lymph nodes and grow there. Because lymph is a slow moving fluid (it isn't pumped like blood from the heart, and lymphatic vessels are networked), the cancer may sometimes hang around the prostate lymphatic drainage area for some time. If that is the case, radiation and systemic therapy may still be able to kill off those cells.

Javelin18 profile image
Javelin18 in reply toTall_Allen

Good explanation. Thanks

Spyder54 profile image
Spyder54 in reply toTall_Allen

TA,I too am slated for MSK Precise Radaiology of my Prostate only. I am Oligometastic. My understanding is that it is a combination of Image Guided (IMRT) using MRI, CT,Ultrasound while halfway in the MRI Machine, with built in CT scan at 90 degrees and ultrasound probe. This allows a Stereotactic approach (SBRT/SABR) along with a hypo fractionated (low,med,high) beam.

My treatment is slated for 5 days in the 70Gy range (have not seen the final schedule. I have had 3 gold seeds implanted, and body casts with simulation preparing.

I know there hv been reports that 5 days higher dose is as good as 30 days of lower dose SBRT. Yet I see Dark Energy at roughly 30 doses over 6 weeks. I also see Javelin18 (his 4th post below) saying 6 doses, every other day, but inflammation so bad he had to stretch it out to one each week for 6 weeks

I realize this is not curative, and that we are hopeful of extending life.

What are your thoughts on what works best for us?

Thanks,

Mike

Tall_Allen profile image
Tall_Allen in reply toSpyder54

The nice thing about forums like this is you get to hear anecdotes from patients who may seem to be more real to you than the dry statistics you read about in clinical trials. The bad thing about forums like this is you get to hear anecdotes from patients who may seem to be more real to you than the dry statistics you read about in clinical trials. It is called the "availability heuristic" and is part of being human.

The way I get around it is to remind myself that in a clinical trial of, say, 200 patients, each one of them had an experience of that therapy. Their doctors spoke to them, even if I didn't.

So, in eight large randomized comparison trials, patients had the same results and the same toxicity whether their treatment was "hypofractionated" (fewer treatments, higher dose rates) or not. In the PACE B randomized clinical trial, there was no difference in toxicity between SBRT and IMRT.

When any large group of patients are treated, there will always be outliers who don't respond well to radiation. In the same way, a "safe" drug like aspirin, is toxic to a small percentage of the population.

Javelin18 profile image
Javelin18 in reply toSpyder54

I think the best use of this site is as a source of information. Independent research is time consuming and it can be difficult to understand medical papers. This site makes the inflammation much more accessible. Both the research information sited here , and the personal information should help inform you, so you can understand and question your doctor’s advice.

Evidence based medicine is only a few decades old, but it has been revolutionary in getting the best care for the most patients. It gives us an objective way of choosing the best care, while teaming with good doctors. Following the standard of care gives us the best odds of holding cancer at bay. “The race is not always to the swift, nor the battle to the strong; but that is the way to bet.”

However, nobody here is a doctor, They can tell you what the latest research says is the best approach, but can’t tell you what you should do. Anything you hear from me is only information to use to decide on the best care, along with your doctor.

Those decisions are a really tough thing to do, and the stakes are high. Most of the people in this site are faced with that same task, and understand how difficult it is. I find the experience of others a comfort.

How was the vacation?

DarkEnergy profile image
DarkEnergy in reply to

Vacation was good, effective in getting a break from ADT, although my T didn't rise that much.

monte1111 profile image
monte1111

You had me at holy ripe guacamole Batman. I have too many bone mets for radiation to be considered. I do so hope that this is a successful treatment for you. We all need some good news.

DarkEnergy profile image
DarkEnergy in reply tomonte1111

Thank you, alway good to hear from you. Actually, soon after my PCa diagnosis (2 years ago), took a bone scan, the report stated extensive vertebrae metastasis findings. But, a recent scan from Dana-Faber's brand new machine has me as Radical Oligomet (<4 mets) status - hence, the daily radiation treatments.

in reply toDarkEnergy

so the scan was incorrect?

DarkEnergy profile image
DarkEnergy in reply to

The interpretation of the scan was incorrect. It was not a PSMA scan, so if bone area had a lighter contrast, then cancer was the rational.

The recent PSMA Pet scan was amazing, it showed 3 "glowing" spots: the left scapula, prostate and iliac (Lymph) node. The vertebrae did not lit up at all. Did get a biopsy of the spine, saw the procedure on the monitor, large needle tapped into the spine! Result: negative for cancer cells.

So, now, radiation treatment becomes a standard option.

raoulmaher profile image
raoulmaher

Hello gentlemen, funnily enough I am booked in for exactly the same treatment for exactly the same reason - original psa 41 Gleason 4+5 mets 2 - I will also try to see where I am from my surgeon’s- indicated 5 year life span !!

Incidentally has anybody heard from Greatjohn recently

Kindest Raoul

Javelin18 profile image
Javelin18 in reply toraoulmaher

Here’s the latest post from GreatJohn. I scrolled through the posts until I found a picture of good looking food.

healthunlocked.com/advanced....

Boywonder56 profile image
Boywonder56

Dark....sounds like according to ta your above guidelines.....mite reconsider?...not butting in just being devils adv.....merry xmas....

DarkEnergy profile image
DarkEnergy in reply toBoywonder56

Yes, my treatment plan is the same as TA mentioned.

Javelin18 profile image
Javelin18

I had SBRT to the prostate. The dosage was supposed to be every other day, for 6 total doses, with a higher dose than the streched out 20 dose regimen. I had so much inflammation after each dose, that my RO spaced them to once per week.

I can relate . But there is good news . I too Did 5 pr week imrt for 8 weeks . Double adt and the combo kicked my pc in its long tooth . I Pray that it helps you like it did me . It was a grind on me at that time . Somehow the light shined through after many a dark day . Hang in .there . You can Believe that this is able to put pc away for some time . .get r done then a speedy recovery .🙏🏋🏽‍♂️☘️

DarkEnergy profile image
DarkEnergy in reply to

Well, considering having PCa, the radiation order is a good sign. My prior treatment options: ADT+, chemo and possible immunotherapy.

Now radiation is the treatment, which means killing the tumors...

in reply toDarkEnergy

Might I recommend what I did in imrt ? I did two treatment days per week of 500 calorie days . This is called “ fast and live “ YouTube video . The theory is that the already weakened cells by the fast are more readily knocked off . I went from 233 down to 165 and gaunt . But guess what?The pc died ? Addios to that mofo! This is what I want for you too! 😎🌵🙏

Rest up buddy! Rt can grind you down a bit. You’re going to kick the pc in its teeth . Make sure to stay hydrated always. Rest eat and treat yourself kindly. Just imagine those tiny bastards leaving for good! Im pulling for miraculous results. 🙏❤️❤️

DarkEnergy profile image
DarkEnergy in reply to

You are like a best friend, I need to see you in person brother.

in reply toDarkEnergy

I care about you . I ve always liked you . Are you still commuting ? We’re in Prescott Az. Just hoping covid dies out soon . I’ve been home bound since the start of Covid . We are Working on a bit of cabin fever . But I Don’t want to go out like Jack in the shining . All work and no play makes Jack a bad boy . My hope is that by spring you’ll be in a much better place and maybe I’ll drive back to see you . I haven’t been on the east coast since 1990 . Our home is open to you if you feel better and want to see the Grand Canyon or Sedona . Both close by . I got the chronic fatigue syndrome after imrt . Pc bit in my urology pretty hard . I’m lucky to be alive . I went through some bad shit waiting for dx . I’m praying for you to push pc back into its hole were it belongs . It is no friend to mankind! Keep rolling ! ! Salud! 🎢🎢🎢 Scott 🏜

Javelin18 profile image
Javelin18 in reply to

We have a place in Prescott that we hope to retire to. We have tenants in there now. Do you commute to Phoenix for treatment?

in reply toJavelin18

No Sir! I’ve been on a test drug seven yrs out of now banner in Tucson . I go tri monthly . Come retire here . We love it!

in reply to

My birth town. My Dad managed Banner mine many decades ago

in reply to

You from Tucky? Where’s banner mine? I was talking about banner Corp took over UOf A med center . My dad was the superintendent of Saguaro natl mon then in the late 60’s we lived in the park east side for five years.I was in 4th grade at Tanque Verde grade school.

in reply to

we lived in Wilshire Heights. Banner MIne would have been the other side of town out toward the hills. That was a long time ago

in reply to

Are we talking about tucson? Wilshire heights ? 🧐

in reply to

Yes we are. Its been decades though. I went to Alice Vail and my older sister went to Rincon High

in reply to

I know vail .My b ro lived on Rincon creek inside of the x-9 ranch for many years . My bud Jeff Lundgren and his siblings were at Rincon high .

in reply toJavelin18

By the way . We have our local troop of javalinas running through our hills .once I counted 23 crossing the road . My neighbor had 42 once at his place ..that’s a troop .. they have one silver ringed neck bull always leading the tribe . I Think of you . Ring us up if in town . I’ll buy the sasparilla at Matt’s saloon ! 🏜🌵🥂

Javelin18 profile image
Javelin18 in reply to

I’ve never seen the bulls, but had a mom with three small ones knocking down trash cans in our neighborhood. We may be out sometime in the spring. I’ll get hold of you if we do.

in reply toJavelin18

Exactly . We cant leave any edible food trash out . Until then ! Happy new year! 🥳🥂

One of the videos Darryl recently posted, I think the last day, was an MO from Duke that mentioned that studies have indicated that radiating the prostate led to increased overall survival but I did not get the details. You might check that video out

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