Don't Give Up Hope. 4 Years after a dreadful dx of metastatic PC with a 209 PSA and bone mets, I am still undetectable

[poofers]

Hi all:

I never imagined that I would be writing this positive post almost 4 years after my dreadful PC DX (2014) with a PSA of 209 and bone mets on pelvis to boot.

I have been on Degalirix (Firmagon) injections on a monthly basis since then as well 50 mg of Casodex daily and today I just had full labs showing that I am still undetectable ( PSA <0.02) and all other blood work is perfect. (check my profile)

My Oncologist says that I am well above average but he has a patient who is going on his 11th year and still of first line HT....

However, the HT treatments have taken a toll on my bone density. Bone scans clean but bone density shows very mild Osteopenia. Oncologist wants me to start once every 6 months shot of Prolia next month after I get some dental work cleared up.

It has been a long battle and other than occasional days when I am fatigued, for the most part, I remain very active and take long 5+ miles walk on a daily basis. I also, finally, have been able to lose a few lbs. thanks to dietary changes. I am still able to drink a couple glasses of good California Cabernet every night. Liver labs still perfect so the red wine will keep going down the hatch every night

I check in on all of you on a regular basis and I am hoping that my positive results give hope to all of you Battle Bros.

I am also on Healing well forum and go by the name "geop" on that forum

Stay well

[RyderLake2]

Prolia a very good choice. Once every six months is the normal maintenance dose. Let your dentist know that your oncologist has prescribed Prolia because there is a slight chance (less than 2%) that you might develop osteonecrosis of the jaw (ONJ) as a side effect of the Prolia injection and you don't want that. There is a risk of ONJ with Zometa (zoledronic acid) as well.

[Patrick-Turner in reply to RyderLake2]

It seems to me all drugs to increase bone density can cause lower jaw necrosis in men who have been chemically castrated for years due to ADT for Pca.

I had 3 injections of Denosumab in 6 months which I think was way too much, but doc didn't think so, and he said it would slow down bone met formation. It did not.

2 months after the 3 doses I got ache in right side lower jaw which was due to a small spot of dead bone on jaw. I looked up this on Internet, and sure enough, JN occurs in 2% patients average with men with normal testosterone, but it is much more common in castrated men.

I had also had one zelodronic acid infusion in 2012, and its effects are lasting, but deonosumab effects reduce over time.

The inside of jaw at the JN location is slightly sore to touch; the bit of bone is dead, so the body has to deal with its removal, and that takes time. I cannot feel a cavity where bone is dead. But My dentist was able to polk a probe through small hole in skin and touch raw bone surface. I had it all checked out by oral surgeon, he verified dentist finding, but it is not a huge problem for me. So don't take too much prolia.

I read a German study a long time ago which said that bone density drugs do not reduce the progress of Pca bone mets.

I'm 71, very fit, BMI 25, waist 99cm, resting heart rate 52, keen cyclist, diagnosed 2009, Gleason 9, inoperable PG tumor, and I am now riddled with bone mets and have Chemo 4 next thursday, but Psa has gone from 12 at start chemo to 30, so Docetaxels so far is having ZERO effect.

I'm looking to book myself in for Theranostic treatment with Lu177, or maybe Radium 223.

Patrick Turner.

[poofers in reply to Patrick-Turner]

Hi Patrick-Turner.

Prolia is once every 6 months to prevent the possibility of bone fracture due to mild osteopenia. I will need to get a clear from my dentist prior however because the Oncologist did not seem to think delaying the Prolia in order to complete dental work would be a big deal as I only have osteopenia which is not as bad as osteoporosis.

[Patrick-Turner in reply to poofers]

Well, I have mild osteopenia or whatever, but BD has gone low. Once, while getting BD measured, the radiation doc said that elite athletes at 25 who compete at Olympic level here often had very low BD, especially swimmers and cyclists because they do most effort sitting down or lying down. They are prone to more bone fractures than a runner or a walker athlete. Cyclists have the added danger of speed in their pursuit for gold, and falling off a bike at 70km down a hill is a real bone breaker.

I am a keen cyclist, so I have the problem. But I try to walk more than I have in much of my recent past. At about 50, my knees went bad, I had natural tendency for cartlidge thinning and so I was forced out of building trades and became electronics worker instead, mainly sit-down work. I didn't cycle for 9 years.

But BD remained above average. I had knee arthroscopy which reduced pain and allowed return to cycling at 59 in 2006 and I have cycled 135,000km since to present day. But BD went low after 2012 after 2 years of ADT and its remained low, and so if I fall off bike its likely I will break something more easily, but then I am careful, and not as fast as I use to be.

In one TV science show Catalyst on ABC TV about 4 years ago, they showed how BD in men on ADT could be maintained by exercize and if you walk a mile a day, 7 days a week, you should be fine, because the impact on knee joints causes body to build strong bones. I have had a double TKR, and recovered well from that after 20 months, but I worry that bone healing under titanium is now full of Pca bone mets.

The amount of Denosumab I had was about 3 times more than was needed, so I was highly likely to get the lower jaw necrosis that I have. Docs were wrong to order me to have so much. I also had to make sure i didn't need dental work. I spend about $1,000 a year to keep my teeth well cleaned, and I have only lost 2 molars, one at 19, and one at 55, both caused by incompetent dentists. But I have no idea when any more teeth just die from old age and need to be pulled from lower jaw.

Its very easy to end up with a chronic jaw problem as well as the cancer problem.

Patrick Turner.

[kenner in reply to Patrick-Turner]

God be with you on your journey.

[Tall_Allen]

Nice to see you here!

[Roberthale7318 in reply to Tall_Allen]

Since it’s great to hear good news and I’m using you as my mentor… (Hope that’s OK) thought that I’d let you know that, after only 20 days on Zytiga, and 30 days on Lupron, PSA went from 8.3 to .69... MO was quite impressed!

[Tall_Allen in reply to Roberthale7318]

I hope you get a long run on Zytiga.

[leo2634 in reply to Roberthale7318]

7 months on Zytiga PSA undetectable.

[Schwah]

I highly suggest that in lieu of prolia you use zometa along with Celebrex. Zometa is similar drug to the prolia. As Tall Allen (our resident genius over here) pointed out to me that combo in a recent study was shown to reduce death at the 43 month mark by 22%. That’s a lot. They are not sure why and neither drug had an impact alone. But together ?? As they say in this article it’s a “no brainer” with its limited side affects.

pcnrv.blogspot.com/2017/06/...

Schwah

[Tall_Allen in reply to Schwah]

Prolia is a low dosage form (60 mg every 6 months) of Xgeva. Prolia is indicated for men with no mets; Xgeva (120 mg every 4 weeks), after mets have been discovered. Zometa (4 mg every 4 weeks) accomplishes a similar BMD preservation as Xgeva in men with mets. I would guess that any of them combine beneficially with Celebrex. A recent study showed that Zometa every 3 months is not inferior to an injection every month. The rare side effects (osteonecrosis) get less rare the longer one takes them, so fewer doses are probably safer.

meetinglibrary.asco.org/rec...

Blood calcium levels have to be monitored with any of them.

[podsart in reply to Tall_Allen]

Tall - my blood pressure spikes with Celebrex , any equivalent replacement suggestions?

[Tall_Allen in reply to podsart]

Sorry- Celebrex+Zometa was what they tested.

[podsart in reply to Tall_Allen]

Thanks

[JamesAtlanta]

Congratulations and thanks for sharing the great news!! 🌈. We are all very excited for you!!

Best,

James

[dbrooks_h]

What was last T level.

[poofers in reply to dbrooks_h]

around 10 or non existant

[Hirsch]

Great results. I don’t know your age but mild osteopenia would be not uncommon anyway as we age.

[poofers in reply to Hirsch]

60 years old

[j-o-h-n]

Reply to poofers:

You came in here and POOF you're gone....CONGRATS! <---- Loud so you can hear it..

Good Luck and Good Health.

j-o-h-n Friday 09/14/2018 11:38 PM EDT

[malihaamjed]

My father's case is hormone refractory. Do hormone refractory also have any positive outcome like yours after 9 cycles of Docataxel chemo and Abiraterone?

[dress2544]

Hi Poofers

You are a very lucky person to achieve such a woderful response for the first line HT. Congrats. Can please share with us your age and Gleason score at the time of diagnosis.

[poofers in reply to dress2544]

age 55 at DC Gleason score 8

[dress2544 in reply to poofers]

Thank you Poofers for sharing your history of diagnosis with us. I was diagnosed for high risk advanced prostate cancer with initial PSA of 70 and Gleason score 9 (5+4). My first line HT with lupron and bicalutamide was effective only for 20 months, then it turned to castration resistant. Now I am with second line HT with Aberaterone and Prednisone.

Wish you all the best in your treatment outcomes.

[leo2634]

Hi Poof I've been on Zytiga,Prednisone ,Eligard six month injection, and Xgeva for bone Mets going on 8 months now as my first line of treatments . PSA has been undetectable since the first month. I think the ADT is one of the ways our type of cancer is being routinely attacked now. I keep praying to God that it keeps me alive at least until the next best treatment comes along . Leo

[Hidden]

Good on you.

GD

[larry_dammit]

Wow,Great to hear your progress is going so good, I’m just 2 years into this Battle and love to hear from you guys that are winning the war. Keep up the good Fight. 😀😀😀😀

[tallguy2]

Just when I was getting a bit down...thank you very much for this "good news" report! Like you, I am convinced that exercise and a few adult beverages per day are an important component in the fight. My MO is administering Prolia every six months...no obvious side effects. Given Tall_Allen's post I will ask about Xgeva every 4 weeks at my next appointment.

When I am in-between treatment regimes I seem to fall back a little while waiting to start the next chapter. Your post brightened my day. Thank you.

[poofers]

Hi Battle Bros:

Thanks for all of the kind words, advise and encouragement. I wish you all the best as we fight this beast together. I realize that my cancer can rear it's ugly head back again anytime, but until it does I plan to enjoy every second of my good fortune and will keep fighting it until I no longer can. I encourage all of you to do the same, keep your spirits up and in spite of the brutal treatment side effects we all endure, there are many new drugs on the pipe line with fewer side effects.

One particular one to look out for is "Darolutamide" I believe that the last phase of the trials are about to conclude and the drug will hit the market for non-metastatic PC. This is very similar to Xtanti but there is one big difference in that it has so far shown to have very few if any neurological symptoms. like Xtanti does. I am sure that Tall Allen is more informed about this new drug than I am.