Anyone keeping Biochemical Recurrence under control without ADT?

[Tommyj2]

While ADT appears to be the gold standard for initial BCR there appear to be a plethora of other methods that address it as well ( Salvage Therapy, Non Hormonal Tx's ( eg Provenge, Metformin) Natural Substances ( eg...Pomegranate ,curcumin, Sulforphane) I imagine some here might be attempting to address BCR without resort to ADT. Doing my homework while I wait ( most impatiently) for answers to my queries for 8 year old medical records in order to make a more intelligent decision once I have all my facts in a row.....

[Blount]

Thank you Tommyj2 for asking this question. I will look forward to the replies.

I am 70 years old and had a RP I’m 2016 with a biochemical reoccurrence of cancer.

My PSA is .40 and my RO is recommending salvage radiation and Lupron. I am not opposed to radiation treatments but want to avoid Lupron if at all possible. I would imagine there are many men weighing the quantity vs quality of life decision around Lupron. I know both of us would appreciate others opinions.

Best to you,

Blount

[Tommyj2 in reply to Blount]

Hey B.....

Doesn't look, so far, as though I am going to be swamped with responses....guess most folks stick with the standard of care.

[RCR38 in reply to Blount]

I was 56 when diagnosed with PC with lymph node invasion. Did RP, Radiation, Chemo with Dox, and Lupron for 2.5 years. By far the worst was radiation which led to incontinence both #1, and #2 additional urinary blood clot blockage on a regular basis since. Took a Lupron vacation, PSA started rising over the next year and now year 5 my latest scan shows I have metastasis in seven additional places. No way would I do radiation again as those side effects have been terrible. Lupron seemed to only affect me with hot flashes so most likely that is where I am leaning to treat BR. I am pondering an Orchiectomy instead of Lupron- No Dr. at USC, UCLA ever have a decisive solid answer other than standard of care. I know what I won't do, I am just not sure what I will do at this point. Just joined this page, best info I have found other than PCRI.

[Justfor_ in reply to RCR38]

The attitude here is that being irradiated is just a walk in the park. I believe the exact opposite and try to delay getting to it as far down the line as possible.

[Hidden]

I had recurrences after RALP in 2008 and then again after salvage IMRT in 2009. Went on Lupron (monthly), Casodex, Avodart and Cabergoline in 2011 (PSA became undetectable). another recurrence when Casodex failed in 2012. Switched to Nilutamide and PSA dropped back to undetectable. Provenge in 2014. I stopped all ADT in 2016. PSA remains undetectable. T hovers around 50. I take Metformin, statin, Vit D, Vit K2 (natto), Vit B12,Calcium, Prolia. Current age 78. Whatever treatment you choose to do will require continuous modification and vigilance. Check out Us Too.

Good luck Tommyj2.

Clint

[Tommyj2 in reply to Hidden]

Thank you for the reply Clint...what made you decide to cast off the ADT and other " standard of care" tx's ?.... Is an MO or other MD following you with your latest regimen?? Some of the items you mention are prescription but there are, I know, work arounds.. Not familiar with Natto. Very glad that this is working out for you....REALLY hope it continues... Frankly...if I were 78.. I wouldn't even be considering ADT unless I had bone mets( you mention recurrence but not metastatic disease??.... Best of Luck with this course of tx.

bob

[Hidden in reply to Tommyj2]

Hi Bob,

I never had any mets and have been under an MO's care since 2011. We work together on all my treatment decisions. My recurrences were all just climbing PSA.

Since I had Provenge in 2014 and my PSA remained undetectable, I decided to stop all ADT in 2016 to see if the immunotherapy had worked. Since my PSA remains undetectable, I'm hoping that is the case. Unfortunately, this disease can pop back up years later so I continue getting PSA tests every 3 months.

Natto (fermented soy beans) is one of the best sources of Vit K2 and there is anecdotal evidence that it may promote PCa cell apoptosis. The Japanese swear by it. I eat 1 tbsp daily.

Clint

[Tommyj2 in reply to Hidden]

I'm unclear as to why you had provenge if you had no local or distant mets..... you got it just on the basis of rising PSA??

[Hidden in reply to Tommyj2]

I read that immunotherapy might be most effective before PCa metastasis. My MO agreed. I look at it as an immune system booster (or vaccine) and since I had recurrent PCA, waiting for it to start forming tumors made no sense to me. Only time will tell whether it worked or not. Five years since Provenge, no Lupron or antiandrogens, PSA <0.006. Fingers crossed!

[Tommyj2 in reply to Hidden]

Did insurance cover the provenge or was this an out of pocket expense??? I would go this route if I could get it paid for but OOP expense is out of the question unfortunately.

So glad for your progress clint.

[Hidden in reply to Tommyj2]

I have Medicare and Tricare-For-Life so insurance was not a problem. A lot of work is being done on immunotherapy now, so maybe something less expensive will be found soon.

Best of luck, Clint

[Tommyj2 in reply to Hidden]

So insurance DID cover the provenge... that was my question... Generally, with medicare, if a medicine for cancer is administered in an MD's office Part B will cover it... don't know where tricare fits into the equation .... Don't suppose you recall if it needed to be preapproved??

[Hidden in reply to Tommyj2]

I can't recall about pre-approval but I'm pretty sure that it was required. Since I am retired Navy, Tricare-For-Life is my Medicare supplemental insurance.

[GeorgesCalvez in reply to Hidden]

I am on Firmagon from end March 2018 to end October 2019, last injection at the end of September.

I have managed to persuade my friendly personal physician to give me Metformin 2 x 500 mg per day, Irbesartan 300 mg per day, Amlodipine 10 mg and Avorstatin 20 mg per day.

I am also taking a multivitamin and D3 with calcium.

I feel great apart from the nightly leg pains and the odd sweat, I am hoping that the cocktail above is getting rid of any last cancer cells and that when I stop the ADT my testosterone will return but not the cancer

[Bacana in reply to GeorgesCalvez]

Are there off-label benefits from taking Amlodipine? My hubby takes it for high blood pressure.

[GeorgesCalvez in reply to Bacana]

I really do not know about the amlodipine, depending on who you believe ARB's such as Irbesartan have an effect on biological recurrence.

As a result of the Firmagon my blood sugar, pressure and cholesterol rose so I started on the cocktail above.

I am hoping to reduce it when I step off the ADT bus in the autumn, hopefully for good

[Tommyj2 in reply to GeorgesCalvez]

Wish you a lot of luck with this regimen... I've seen Metformin and atorvastatin mentioned in clinical trials but have no familiarity with the Blood pressure meds and effect on Pca.... have these been included in trials as well??

[herb1]

I was curious to read the non-hormone methods to which you were referring. Salvage radiation? OK. If you have located the recurrence you might explore focal treatment-such as ultrasound (HIFU), cryo therapy. But I'm skeptical of the other methods you suggest and would ask that you provide references that show more than short time and/or partial remission. Good luck, whatever path you follow.

Why does everyone consider hormone treatment as being so harsh? Yes, there are POTENTIAL side effects, but that doesn't mean everyone or even a large percent of the users will experience them. And, unlike other treatment, if you don't like it after a month or three, you can always stop it. For me and my GS6/T2B recurrence, ADT has taken me from 2001 (age 65) to now (age 83). Yes, I have cardio issues but so has every other male in my family.

[Tommyj2 in reply to herb1]

Herb

Sorry to hear that you had a recurrence with a low gleason like that... wonder what would have happened without ADT?...... you recall your doubling time or how high your PSA was when you initiated ADT?? You make good points regarding the variability of side effects.....BUT... if the people on this forum are to be believed they affect a lot more men than not..... Perhaps you were one of the lucky ones...

[Tommyj2 in reply to herb1]

Herb.... I'm not sure if one of the notes I received was directed to me or not..... If you were referring to my initial query where I named several substances that have been in clinical trials ( Metformin, Pomegranate, Sulforphane)... I don't have the final results of those trials as they are ongoing....I don't have immediate access to the URL that itemizes these " alternative " methods ( which also included Celebrex, Statins, Curcumin) What I DID note was my misphrasing.... I am not suggesting that these are " proven" treatments.... they simply warranted enough attention to bring them to trials.... the purpose of my post was to ask if anyone had any direct experience ( anecdotally) with any of these potential tx's...... If they were already " standard of care" I wouldn't have posed the question....

[Tommyj2 in reply to herb1]

Herb....

You didn't mention what side effects YOU had with ADT... you made some good points re: not everyone getting the full range of potential SE's but how did YOU make out...

Bob

[monte1111]

I wish you all the luck in the world sir. I am one of those who will be on ADT for the rest of my life. I do not have a choice. It is just like chemo. You can look at it as if it is an ugly sentence to be avoided, or if it is a green, leafy branch for a drowning man to grasp. Many of us are very deep into the water. I am so glad you have choices I was never given, or will never have. Again, good luck sir, and enjoy.

[Tommyj2 in reply to monte1111]

Hello:

I don't yet know if I have choices.... still awaiting scans that will determine if I have any distant mets... Nuclear Bone Scan is clean but that doesn't clinch it as you know..

[herb1]

Tommy: As I recall, my doubling time was running 3-3.5 months (from .4 to 9.8 in about 24 months. I chickened out when PSA reached 10 and started ADT-3 (Lupron, Casodex, Avodart (actually Proscar). I did 3 cycles of intermittent treatment until about a year ago, when psa just froze at about 0.4 . I now stay on ADT3. Scans failed to find the culprit the last time we looked. SADLY, (and now I'm back on my soapbox), many of my scans were done at very low psa values, Oncologist should have known they'd be a waste.

[herb1]

Tommyj2: Maybe I'm losing the sequencing on these emails, but:

a. My side effects on ADT-3? Long time ago, but I did have some MINOR hot flashes. Best solution was a couple of $1 battery fans around the house, used occasionally. Yes, I had a heart attack 2 yrs ago (age 81) but few of the previous generation of men in my family live to that age in the first place. Getting old sucks, but we don't have many choices.

herb

[Tommyj2 in reply to herb1]

I can see why you take issue with others who complain of the severe side effects..... you got off pretty well : ) Heart Attack at age 81 with family Hx... Hard to blame that on the ADT.... BTW... my fault that you are having a hard time with the sequencing.... I replied to an older post... Best of luck to you.

[Break60]

Yes I switched to estradiol patches which also reduce T but without all the side effects. See

ctu.mrc.ac.uk/media/1282/c-...

Bob

[Longterm101 in reply to Break60]

Hi Bob

I just got some from my UO and looking forward to trying it

Thx

[Break60 in reply to Longterm101]

Good luck!

[Longterm101 in reply to Break60]

Where do you apply your patches ?

Butt?

[Break60 in reply to Longterm101]

Abdomen below navel

[Tommyj2 in reply to Break60]

Hi B...

Thanks for the response... I know there has been some controversy on this board re: Estradiol Patches.... As this study is 123 pages long : ) .... could you tell me a bit about YOUR response?

Were you ever on ADT or are the patches the only thing you have done?? What side effects have you had from the patches ( I've read that Man Boobs are almost a sure thing) what SE have you avoided? Anything you care to tell would be welcomed....

thanks much....

[Break60 in reply to Tommyj2]

I was on IADT since 2014. Triple blockade ( Lupron , casodex, dutasteride) . I used one patch for hot flashes since ‘ 15. I had man boobs from casodex so the patches didn’t add much to what I had but I had nipple soreness for a month. Patches are better for bones, heart and libido than ADT. And of course much cheaper. I no longer have joint pain, brain fog , fatigue.

Bob

[Tommyj2 in reply to Break60]

Once again.... thanks for the info... and best of luck in keeping that PSA under control!

[Break60 in reply to Tommyj2]

Tommyj2

Thanks. Be sure to review my profile; I’ve had a lot of treatments, primarily RT to mets found when I stopped ADT and Psa started to rise again. I’m hoping the patches last for awhile (like years!)

Bob

[Tommyj2 in reply to Break60]

Geeze..... you HAVE had an immense amount of Tx... Who recommended SBRT for the mets?? Is this really more effective that just using the ADT....

[Break60 in reply to Tommyj2]

My RO . It is controversial no doubt. But if it can be done safely, why not?