Chicken Squawks!

[Burk]

Greetings Guys, I am 62 yrs old and I live in Chambersburg, PA. My PSA was 24 in March; 31 in April. A bio in May revealed adenocarcinoma in 11/12; gleason of 4+3.

My URO referred me to Dr Behari Ashish a distinguished URO LAP surgeon here locally at Wellspan. They wanted to do RP. I requested time to get a second op.

I contacted Dr. Misop Han @ John Hopkins. JH did a slide review. They upgraded one core to 4+5. Dr Han said to me, "Surgery will not fix your problem. You need to see an RO".

In July I visited CTCA In Philadelphia. I met with Dr. Francis Schanne a surgeon. Nothing new. I also met with Dr. Curt Heese an RO. Good news! RT can do everything that surgery can do with reduced risk of side effects. Bad news! Daily treatments for six weeks. Philly is 4 hrs from home.

Next I visited Dr Whoon Kil a local RO. Sure, he can provide RT, but first you need to go on HB. Three months of HB before RT and then stay on HB for two years. Back to my URO for HB. I've been on Firmagon now for two months. I go for my third injection today.

It's not a bad life on Firmagon. I mean, No libido, Hot flashes about once per hour, but they only last 5 min at the most. Plans are to fry my prostate next month, .... but now I have been introduced to Dr Robert Leibowitz's THB protocol.

I refused RP because I needed a more broad spectrum treatment. Now I am wondering if RT is adequate. If I am going to be on HB for the next two years should I be doing THB? Is THB effective? Should I do TBH instead of RT?

CT in June.. no evidence of cancer. Bone Scan in July... no evidence of cancer. MRI in Sept... no report yet. Isn't that strange to make a guy wait two months for an MRI report? Most recent labs show T <3 and psa 2.37. Hopefully that is good news, but it's not <1.0 psa.

In retrospect, If I would have had RP, I'm certain that I would have been referred to an RO for RT who would have prescribed HB. What level of treatment do I need to kick this thing? I'm more concerned about the side effects than the treatments. Do I need to jump through all three hoops... cut it out, burn it out, then starve it out?

I know this is a forum for advanced cases and you guys probably think I'm a chicken. I'm new at this and am trying my best to make informed decisions. Who knows better than those who have been there??

[LearnAll]

Your scans are clear and your PSA is falling on current treatment. You have been on hormone therapy only for 2 months. I will wait another 2 to 3 months to see how low PSA goes. .If it goes to 0.2-o.3 range...I will just postpone every other treatment for now. That's just my opinion. Not a prescription

(In the world of prostate cancer, nothing happens overnight... )

[Burk in reply to LearnAll]

....except RP. Thanks for the insight.

[LearnAll in reply to Burk]

I M sorry. I did not notice that you had RP.

[Burk in reply to LearnAll]

Not a problem. I actually did not have RP. When I was considering RP my LAP surgeon made it sounds so simple. "Just on overnight procedure" I was not convinced.

[LearnAll in reply to Burk]

Good. You saved your precious prostate...Congratulations ! 👍

[Magnus1964]

The firmagon is to send any random Pca cell in retreat. Then all that is left is the prostate. RT then takes care of that. It sounds like you have a good chance of kicking this thing. RT you can get closer to home, i.e. Hershey.

[Burk in reply to Magnus1964]

Thanks! I have a local RO here in 17202. Do you recommend Hershey for any reason other than distance?

[Magnus1964 in reply to Burk]

You were traveling around to some of the best hospitals . I just threw Hershey out because they are one of the better hospitals in South Central PA.

[Burk in reply to Magnus1964]

Understood! That's where I went for my High Def MRI.

[Hidden in reply to Magnus1964]

I agree .

[Hidden in reply to Magnus1964]

Great info Magnus. My first shot was firmagon It worked well.. Now I know why. But nobody ever explained it’s use to me . Thank you It sent those pesky random cells to retreat .

[Tall_Allen]

"Triple hormone blockade" is a relic of the past - you are probably looking at old studies. Only a few quacks still use that, and never as an adjuvant therapy to RT.

With a Gleason 9, the therapy with the best success rate is brachy boost therapy. That means that about 20 treatments of external beam therapy are used on a wider area, plus a brachytherapy boost (either HDR or LDR) to the prostate itself, plus 19 months of ADT. If you see Eric Horwitz at Fox Chase in Philly, he can do the HDR brachy part of the therapy in a single visit, and work with a local IMRT provider to do the external beam part of the therapy.

The downside of brachy boost therapy is the relatively high rate (15-20%) of late-term urinary retention problems.

Because success depends on getting a sufficiently high dose to your prostate, some are experimenting with using SBRT to do the prostate and the surrounding area. The advantages are the relatively low toxicity rates with the monotherapy, and the convenience of just 5 external beam treatments. But it is experimental. Amar Kishan is running a clinical trial at UCLA and so far the results have been excellent. You can try Sean Collins at Georgetown to see if he has a protocol for it.

You should not be doing 40-44 IMRT treatments for it. Not only are the results relatively poor, it is risky to go to a hospital so many times during the pandemic.

[Burk in reply to Tall_Allen]

Thanks, Tall,Allen, Very insightful. My local RO wants to do 20 treatments. I'm nor sure yet of the dosage. I'll find out next Tuesday. Thanks for your insight on THB, I was concerned that most of the info online was dated previous to 2012. I couldn't find any research within the last five years.

[Tall_Allen in reply to Burk]

Fads like THB come and go when better info comes in.

20 treatments of moderately hypofractionated IMRT (which is what your local RO is proposing) is entirely different from the 20 treatments of IMRT that are part of the brachy boost therapy. The IMRT that your RO is proposing is given as 3.0 Gy during each treatment; the IMRT that is given as part of brachy boost therapy may be given as 2.75 Gy during each treatment (I'm not sure exactly what protocol Eric Horwitz uses). In addition, HDR brachy boost adds something like 2 doses of about 10 Gy each (in a single treatment). This gets complicated, but two protocols are compared using a measure called "biological effective dose (BED)" The BED to the prostate that your RO is proposing is 180 Gy, whereas the BED to the prostate of brachy boost therapy is 309 Gy - 72% higher. It has much higher cancer cell killing power. The risk of urinary toxicity does increase, but not by that much.

[Burk in reply to Tall_Allen]

Thanks, I will be seeing my RO next Tuesday. I will take your info with me and compare it with what he is proposing, This is all very helpful.

[Hidden in reply to Burk]

We rented a air b&b very close to the imrt center for the two months of imrt . Fatigue and was an issues no long drives wanted on those days . Get as close you can to the Rt center . This worked well for me . I wish you the same luck . Live healthy and heal yourself .

[MateoBeach in reply to Burk]

Yes as T_A explains Brachytherapy Boost is clearly superior by the best available data. Not all RO departments have someone skilled in this. So you might have to push to be referred to a center with this expertise. Expect resistance.

[monte1111]

Squawk, squawks, and quack, quacks all in one post. I am sure you will get it figured out Burk. Best of wishes.

[Burk in reply to monte1111]

Thanks, This forum sure helps!

[Nous]

hi Burk ... you may benefit from checking-out envita.com

[Burk in reply to Nous]

Took a Look! Will save the link!

[Hidden]

Hey Burk!Where is that dam rooster when you need one? Don’t fret . I too was beyond surgery. I did 8 weeks imrt and double adt.My first shot was firmagon (it worked great!) then Lupron plus A pill form test adt drug that I’m still today with all of the side effects of no t for over five years now. . Over four years clear now. The Rt and adt can put pc away for many years. That’s the hope . Many a man has an rp , and then “ oops! they missed some and then on to Rt or chemo still . Maybe we are lucky to skip a RP.. ?

[Burk in reply to Hidden]

Good morning Whimpy-p, Thanks for the insight. I have several questions. What was the name of the trial drug? Was it ever approved? and What is your definition of clear? Are you willing to share your numbers when "clear" including T?

[Hidden in reply to Burk]

It’s name is Tak-700. The test failed but there are a very few like me still getting results . It stops the signal between the pituitary gland and adrenal production . I cut the boys to shut down the factory .. My Psa< .014 with no visual signs of pc . My T level is 3 and for this I suffer osteo ,sarcopenia was first of course .

[Hidden]

Are you not advanced? Did they give you a stage #4 dx now?

[Burk in reply to Hidden]

Will know tomorrow!

[Hidden in reply to Burk]

I’m waiting to hear from you on this one please?

[Burk in reply to Hidden]

I met with my RO yesterday. I had had a 3T MRI on Sept 29. They found no evidence of cancer in the lymph or bone. My prostate has two lesions so it looks like we caught it in the nik of time. They are prepping me for ERBT. I go for a colonoscopy next week then I get 20x 300 (I don't know the language yet). Don't tell T_A, but I've been doing a lot of natural therapies that I believe has prevented the spread of the disease. Let's keep the lid on that one.