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Lupron and Zytiga working, PSA 1000+ to PSA 0.02

DarkEnergy profile image
65 Replies

A few weeks ago, while having a visit with my Oncologist. We discussed the great response from ADT, in 10 months, PSA went from Dx 1000+ to currently 0.02. Actually, 3 months ago test: PSA 0.2, then a few weeks ago PSA 0.02.

So, I said, the cancer is on the ropes, why SOC is to lean back and wait? Why not step up the assault, with chemo?

To my surprise, the Oncologist totally agreed and immediately scheduled Taxotere treatment. Mind you, this is Dana-Farber, it's really a great to see an overall trend of up-front aggressive treatment!

Will have the full gamut of scans first, then Taxotere infusion next day .

This is interesting, many family and friends are concerned, that I'm getting chemo, they claim I'm hiding the prognosis, the cancer must be spreading!

Has anyone here experience getting chemo after ADT is working?

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DarkEnergy
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65 Replies
tom67inMA profile image
tom67inMA

I had a great response to Lupron, then got docetaxel chemo, and now am on abiraterone. PSA went from 200 at diagnosis to 2 before chemo, down to 0.02 after chemo, and now undetectable with abiraterone. Bone scan after chemo showed major improvements.

Side effects are no picnic but tolerable. I ran/ walked/ hiked a total of 30 miles this week and am planning to go back to work next month.

Also on atorvastatin and celebrex for cholesterol and pain, though they are also rumored to have anti cancer effects. Hit it early and hard and you just might get a long lasting remission if not a cure.

DarkEnergy profile image
DarkEnergy in reply to tom67inMA

Did you lose your hair?

tom67inMA profile image
tom67inMA in reply to DarkEnergy

Most of it. Had to cut off my ponytail as it had become one giant tangle of discarded hair. Still kept enough hair to comb over the thin spots, almost. Lost my pubic hair, nose hairs, and ear hairs. Kept my eyebrows and lashes.

All that is growing back now except the ear hair :-)

DarkEnergy profile image
DarkEnergy in reply to tom67inMA

For me, losing nose and ear hairs, will be a welcomed benefit!

tom67inMA profile image
tom67inMA in reply to DarkEnergy

Nose hair is actually useful for filtration and helping to add moisture to cold winter air. Without the hair my nose dripped continuously.

DarkEnergy profile image
DarkEnergy in reply to tom67inMA

Noted...

Fairwind profile image
Fairwind

Be careful with the Dosetaxel.. One of the side-effects is neuropathy in the hands and feet (Your feet and hands can get numb and tingly and stay that way..You will lose your hair too..Ask about Cabazitaxel, a similar compound that worked better for me with few side-effects..Trade name Jentiva... I would also ask about Provenge before I messed with chemo....

DarkEnergy profile image
DarkEnergy in reply to Fairwind

Yikes, we're bootstrapped into this life balancing act after PCa. Do we play it safe, do we go all out and risk permanent side effects consequently, diminishing quality of life.

Will discuss, found this info about neuropathy: dana-farber.org/health-libr...

tango65 profile image
tango65

Best of luck!!!

GeorgeGlass profile image
GeorgeGlass

I was curious about chemo after a few years of ADT. Why does chemo have to be at the very beginning or the very end but it cant be given somewhere in the middle if adt is still working?

DarkEnergy profile image
DarkEnergy in reply to GeorgeGlass

Yes, this was my subject in discussion with the Oncologist. He basically replied, with PCa, ADT is the defacto treatment, it has side effects, but lifestyle changes can improve quality of life.

The trigger on chemo is measured, as it can cause serious side effects, as Fairwind in this thread mentioned.

Since, PCa has no cure, overall survival, with quality of life is the standard strategy for treatment.

GeorgeGlass profile image
GeorgeGlass in reply to DarkEnergy

what nobody told me when given the option for chemo was that some men are actually cured or PSA stabilized for decade or more. That's not something that's often mentioned, which is obviously important. Gourd Dancer in this site had that happen to him.

DarkEnergy profile image
DarkEnergy in reply to GeorgeGlass

At this point, would not say cured, "durable remission" is the term, google this and be amazed. I've linked Dr Myers talk, easy to see here, please take the time to listen to this talk.

in reply to DarkEnergy

Please understand that I was a guinea pig in 2004 and received different treatment for my Stage 4 with distant Mets than the typical standard. A clinical trial setting is vastly different than the typical treatment. Heck even a MO during a knee replacement remarked, “That’ll never work.”

However, when your guy says in 2010, “(Gourd Dancer), I cant find any cancer in your body, you are cured. I know that you are a realist and think remission, so let’s stop the Lupron.” Me: “Won’t my PSA rise.” Doc: “No. If it dies than you are back on Lupron. Let’s find out.”

Fast forward to a year later with PSA <0.1 and T <5.0, “Let’s jumpstart your testosterone with Androgel.” Me: “Won’t my PSA rise.” Doc: “No. I still can’t find any cancer in your body.” A month later, PSA, <0.1 and T, 579.

Fall of 2016. PSA, <0.1 and T, 525. Since it has been six years since my last nuclear bone scan and soft tissue CT scan, I had my 24th set of scans since 2003. Results: this realist became a true believer that my body had no cancer.

Today my PSA is still <0.1 with no medication and T ranges from 500 to 750 on 4mg of Androgel twice a week. I have had quarterly blood draws since 2006. One day, the standard treatment will change for those with newly detectable Mets. I was one of nine with a complete response. There is a member on this group who had a partial response.

The treatment: “Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. 30 mg of Prednisone everyday through the three courses of chemotherapy.” Note: quarterly injections of Lupron/Eligard continued.

There are those who say that our results are antidotal. However, I am a Statistic of One. And the only statistic which matters is my Statistic. At 72, I am enjoying life. Guys, this is not a in your face scenario; only that as a guinea pig in a clinical trial by a medical oncologist professor and researcher who has dedicated over 30 years of his life in metastatic prostate cancer research, I am cured by the Grace of God and the knowledge of a great man.

Continue your fight and never give up as one day this bastard of a disease will be Killed.

Gourd Dancer

DarkEnergy profile image
DarkEnergy in reply to

Absolutely amazing brother!

Since PCa manifests mostly in 60+ age groups, we're not having enough time for statistics.

There's a take away, I've realized from all the folks and posts here, the cancer cells are like fingerprints, unique to our biology. I think, you were in the right place at the right (time) biology..

And you're here, nice, cannot leave your brothers behind...

Regards,

George

GeorgeGlass profile image
GeorgeGlass

Did your psa go down to 2 with just Lupron or was that with zytiga too?

DarkEnergy profile image
DarkEnergy in reply to GeorgeGlass

Lupron and Zytiga, I've received these treatments after diagnosis...

dougnola profile image
dougnola

Although the physical effects were rather intense, I’m grateful my doc knocked me w ADT, taxotere, and carboplatin my first six months. Got my 500 psa way down. Walked every day so my body wouldn’t forget I needed it to walk. Then switched ADT to lupron and zytiga after chemo which has it at ND since 8/18. Try to walk about 10km per day now. Good luck! (And, yes, lost my hair after 30 days but it’s back on my head and legs. Rest of my body quite smooth now).

DarkEnergy profile image
DarkEnergy in reply to dougnola

dmeffert,

Appreciate the feedback, getting the question, "Why opt for chemo, when ADT is working?". Dr Myers, explains it well: grandroundsinurology.com/du...

I have a male Australian Shepherd dog, walking and herding ducks are absolute mandatory activities, or he'll drive me nuts.

Again, great to hear about your aggressive treatments from the gate!

NPfisherman profile image
NPfisherman

To decrease risk of neuropathy and hair loss, you can try using ice packs on hands, feet, and head or they make ice socks and gloves to use with chemo...Good luck to the EX-NYMets/ DarkEnergy

Fish

DarkEnergy profile image
DarkEnergy in reply to NPfisherman

Is this applied during the infusion?

NPfisherman profile image
NPfisherman in reply to DarkEnergy

Right before the infusion....by constricting blood vessels in those areas, it reduces the amount delivered and absorbed and decreases side effects....my understanding

Fish

6357axbz profile image
6357axbz in reply to DarkEnergy

Someone else on this blog used ice, hands and feet and it worked. Her husband is a drummer. I asked her the specifics and I seem to remember it started just before and they kept it up for about an hour after. The hospital provided the ice. Another spouse said her husband used a. “Cool Cap” and had no hair loss.

DarkEnergy profile image
DarkEnergy in reply to 6357axbz

But, this link about Neuropathy: dana-farber.org/health-libr...

Neuropathy, results from permanent nerve damage "induced" during chemo therapy.

6357axbz profile image
6357axbz in reply to DarkEnergy

True, and not inconsistent with using cold to mitigate SEs. The cold works by constricting blood vessels which keeps a lot of the chemo out of those areas. An assumption is you’re unlikely to get tumors in those areas.

NPfisherman profile image
NPfisherman

Nice response so far....doing great....from 1000 to 0.02....not sure they will pick up anything on scans....Schwah just had scans at .02 and nothing showed...Good luck....

Fish

DarkEnergy profile image
DarkEnergy in reply to NPfisherman

Yeah, but we all know, PSMA/PET can't see the micro/nano creeps floating around, hopefully chemo will get some of them, while in hibernation...

NPfisherman profile image
NPfisherman in reply to DarkEnergy

Let's hope, brother... I think it should....and do in some tumors as well...There is some evidence that Hyperthermia combined with Chemo is synergistic....( work together)....I would ask for " An order of Hyperthermia with my chemo, please"....

Fish

DarkEnergy profile image
DarkEnergy in reply to NPfisherman

A glass of wine or two, as well...

NPfisherman profile image
NPfisherman in reply to DarkEnergy

Red, of course, but yes...why not???

Schwah profile image
Schwah

Did you not do zytega too? I did lupron Zytega prednisone and chemo. SOC is now is early lupron and Zytega or lupron and chemo. Both combos showed a 40% lower death rate than lupron alone. My dr was aggressive tho and I did all three. No proof that all three is better but logic dictates that if A+B is better than A or B alone and B+C is better than B or C alone than A+ b+ C would be the best. I could be wrong but my MO was doing Zytega with lupron long before the studies made it SOC. My opinion is eventually like AIDs, PC will be managed long term by a cocktail of treatments. Oh yea i did zometa and Celebrex too which also showed a 22% lower death rate when used together and I zapped my three mets with SBRT. One year at .02 to .01 and after 21 months of treatment I am doing a vacation from it all. We shall see how it goes. I will monitor carefully. But I say hit it hard while it’s weak.

Schwah

DarkEnergy profile image
DarkEnergy in reply to Schwah

Hi Schwah,

After diagnosis, started Lupron, Zytiga and Zometa. Spot on - about the logic, Dr Myers explains this well: grandroundsinurology.com/du...

Key is to start the cocktails early, In the talk above, Dr Myers claims the first six months is ideal. But the wait until progression is still mainstream. The AIDS example, no cure, but "cocktail of treatments", deems it chronic disease management. Think, there was someone recently, became AIDS cured. Back to PCa, even when RP treated, it's common to hear these patients progress eventually.

Wonderfully, you've been blessed with a great doc, in this unfortunate world we've been transported into.

Oh boy, you're doing vacation, my potential next move, although, leaving PSA 0.01 behind is a bold decision. Knowing, when testosterone goes up, PSA follows. And, then, resuming ADT may not get back to PSA 0.01...

Regards,

DarkEnergy

NPfisherman profile image
NPfisherman in reply to DarkEnergy

Not necessarily, Nalakrats had T=700 while on vacation, and left vacation voluntarily despite remaining "Undetectable" on his PSA..... T is no longer believed to be the "gas fuel" of PCA.....DHT may be the real issue...

Fish

tom67inMA profile image
tom67inMA in reply to NPfisherman

I'm also hearing stories of men who take a treatment break, then use radiation to attack any hot spots that appear before going back on ADT. Perhaps it's a good time for a few cycles of chemo as well. Keep the bastards guessing.

NPfisherman profile image
NPfisherman in reply to tom67inMA

I like the way you think, my man....

Fish

tom67inMA profile image
tom67inMA in reply to NPfisherman

Maybe one day I'll be brave enough to suggest such a strategy to my MO :-)

NPfisherman profile image
NPfisherman in reply to tom67inMA

My MO said "I'm not agreeable to that"--stereotactic radiation to my one lesion, but my wife and I arranged a consult with an RO and it is done...Hit it hard and now, while weak is my motto... Growing Broccoli sprouts currently...something that may help my battle....The idea that nothing helps and do nothing....go pick out a box and a plot is BS and I will not endorse it....Fight....work out....eat healthy....whatever it takes...

Fish

Schwah profile image
Schwah in reply to DarkEnergy

First add Celebrex to your zometa. fmc-reg.onecount.net/onecou...

Shown to reduce deaths 22% in combination. Neither agent alone had any impact.

As to my “vacation” mine is a little different situation. My PSA never got above 7 and it took 7 years after partial chryo to get there. No PSADT since I never doubled. I only had three mets (so ogliometatstic) and I zapped all three with SBRT. I caught my BR very early with a test in Phoenix that was the state of the art before psma tests. So my point is mine seems a little less aggressive which is why I’m a little more comfortable taking this “vacation”. I also did a baseline psma test last week which I’ll do every 6 months to help me monitor. The other thing is long term adt has it’s own set of morbitities. If my PSA had hit 1000 like yours I may have handled it differently. How many mets did you have and was your first diagnosis before and treatment (no previous RP or radiation )? Now I’ll need to decide in a year or so whether to voluntarily go back like Nal. But for now, just enjoying my vacation.

Schwah

PS. Execrcise and low body fat are also proven to reduce recurrence and minimize the effects of ADT. Especially weight training which I do religiously with a trainer. I felt great even during treatment and actually gained muscle mass.

NPfisherman profile image
NPfisherman in reply to Schwah

Get your T up fast is important IMHO... dutasteride maybe if not on it....also, Nal used some sort of natural supplement--a cow grass or something that got T to 700 PDQ...

Hope your vacation goes fabulously, Schwah... Good luck, my brother.... Enjoy the break...

Fish

Schwah profile image
Schwah in reply to NPfisherman

Thx Fish. I appreciate the kind words.

GeorgeGlass profile image
GeorgeGlass in reply to Schwah

who is your doctor? I want to find a more aggressive doctor.

Schwah profile image
Schwah in reply to GeorgeGlass

Prostate oncology specialists in marina Del Rey ca. ‭Dr Scholz is my dr. He’s written a couple of books on prostate cancer but his associates Turner and lam are also good. Nothing but prostate oncology. They are incredibly knowledgeable on the latest treatments but are also forward looking and willing to think out of the box. For example they were combining Zytega with lupron years before the studies showed it reduced deaths some 40%. If you can’t get out yo California They do phone consults but you need to pay out of pocket. I think 30 minutes is like 4 or 5 hundred. Perhaps they can give you some insights after reviewing your medical history. Very nice guys too. Not at all the typical arrogant doctors we all run into.

Schwah

GeorgeGlass profile image
GeorgeGlass in reply to Schwah

That's good info schwah I've talked to other guys before who have gone to scholz. I can try to make an appointment and fly out there. My correct mo worries about my generic coronary artery disease but there zytiga charter stampede results don't indicate that it's that much worse than adt alone for cardiac incidents. Plus my heart markers numbers are good right now.

George

Schwah profile image
Schwah in reply to GeorgeGlass

I’d at least talk to Scholz or any of the three guys there for an opinion. Perhaps a 30 minute paid call is cheaper than a flight and hotel?

6357axbz profile image
6357axbz in reply to Schwah

Is this you first vacation from ADT?

Schwah profile image
Schwah in reply to 6357axbz

Yes it is.

6357axbz profile image
6357axbz in reply to Schwah

Back when you had your mets zapped did insurance cover that? It seems now it’s not SOC although I’ve heard hear insurance will cover if doc says it’s for pain.

dvcarola2 profile image
dvcarola2

Hi George, so nice to hear that you are doing great with a nadir PSA! 👏👏👏

Btw, if you are to start chemo soon, ice packs on hands and feet would be very good to prevent neuropathy. Dondee doesnt have one even after 3rd infusion. I dont do ice cap on the head for him coz you know he doesnt need it 😁. I tried him to munch on ice chips but he would always fall asleep during the infusion so no use.

And just recently, he has been going to a gym near our place with infrared sauna and he said that it has helped him a lot. He feels great after 30-45min daily infra sauna and pains are somewhat non existent now which i think has to do with the synergistic effect of chemo + infrared sauna. Because he is feeling better now, he swims more regularly than before and does gym and lift weights more too.

Aside from feeling great, his PSA from prior chemo of 2.2 has been down to 0.6 before 3rd cycle. I do hope his PSA will continue to go down.

Anyway, we will cheer you on your upcoming chemo sessions and will pray for minimal or no side effects. All the best brother!

DarkEnergy profile image
DarkEnergy in reply to dvcarola2

Hi sister,

"I tried him to munch on ice chips but he would always fall asleep during the infusion so no use."

Well, the Philippines is known for pampering, I'm sure the foot spa massage, manicure and facial during infusion knocked him out.

Simply awesome, before chemo PSA 2.2 and now 0.6! Please stay aggressive, as you've seen here with many posts...

Also, wonderful to hear about the help with chemo therapy, Donde is on the radar, keep him blipping!

All the best sister!

snoraste profile image
snoraste

Good luck with your decision.

I was on ADT+ZYTIGA for about a year and a half before I decided to try the intermittent therapy. PSA went from 95 to undetectable over 8 months, and stayed there for the remainder of the time that I was on hormone therapy. In three months since I've stopped, my PSA is back up to 0.24, and my T at 340. I feel a lot better. Next treatment will be some form of PSMA (alpha or beta). My point being that pushing some of these therapies forward (as you are doing here) while the mutation load is light maybe beneficial in the long run. Keep us posted.

6357axbz profile image
6357axbz in reply to snoraste

I like your take that:

pushing some of these therapies forward (as you are doing here) while the mutation load is light.

Makes sense for me, intuitively

DarkEnergy profile image
DarkEnergy in reply to 6357axbz

Yes sir, the time to be aggressive is at the beginning, when tumor burden is low based on initial ADT assault!

DarkEnergy profile image
DarkEnergy in reply to snoraste

Yes, this is my focus, we all have unique PCa profiles, it's amazing we can post our way. Adding chemo to ADT and Zytiga would not be acceptable just a few years ago, now us patients, are being respected by our collective research and challenges.

Yes, sir, will keep posting and pushing...

DarkEnergy profile image
DarkEnergy in reply to snoraste

Yes, will update about the treatments, Lupron, Zytiga and Taxotere. Looking to add more to the fight!

tallguy2 profile image
tallguy2

Yes, I did a 6-round of taxotere last summer. While on ADT. You are getting great results. Go for it!

DarkEnergy profile image
DarkEnergy in reply to tallguy2

Exactly, going to keep those floating micro creeps guessing...

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

Don't forget to bring along a couple of double A batteries in case your energy goes dark...

Mets? Hmmmmmm

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/25/2019 7:47 PM DST

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

"Respect mah authoritah!”

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

google.com/url?sa=i&source=...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/25/2019 7:54 PM DST

Stomp that pc and live well afterwards . Smell the roses ! Take care ..

Islandboy2021 profile image
Islandboy2021

Yes, my PSA was105 at diagnosis and I was was given ADT . Once PSA was lowered then I had 6 rounds of chemotherapy followed by 20 radiation treatments to the prostate. That was over 3 ago and my PSA has been holding at .02 and bone scans look good.

DarkEnergy profile image
DarkEnergy in reply to Islandboy2021

Awesome, me too, it means our PCa is hormone sensitive. We're unlucky to get cancer, so at this point, fortunately our cancer is not the aggressive small (ductal) cell type.

Islandboy2021 profile image
Islandboy2021 in reply to DarkEnergy

I am currently taking a break from the ADT. It’s been 9 months and PSA has been holding steady for the last 6 months. I get my next blood work done next week. The Urologist wanted to keep me on the ADT indefinitely. I consulted with the Oncologist and he said I could try taking a break but usually stage 4 metastatic prostate cancer patients don’t.

I have had my blood work done every 3 months since diagnosis.

DarkEnergy profile image
DarkEnergy in reply to Islandboy2021

Yes, ADT for life was/is the "provider's career safe" prevailing strategy. I have an open respectful relationship with my Dana-Farber oncologist, my diagnosis of PSA 1000+ with tumors making me scream while urinating, did suggest for me, ADT for life. But, after four months of getting a Lupron depot shot, my PSA got to <0.02. Have a recommendation to take an ADT break, perhaps, maybe, sounds sweet.

I've recently stopped taking ADT, still PSA undetectable, but I don't trust these clever cancer cells, they're a smart bomb, looking out for the rest of my life...

TEBozo profile image
TEBozo

That's a good question. Get a 2nd opinion?

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