Discouraged

[Peterd110]

Been taking zytiga with trelstar a year now since diagnosis. Initially psa fell quickly from 352 to undetectable, but since May has been doubling monthly. Today it is 0.97. 😔 I sure was hoping to be on this regimen longer. I go back to dr next Thursday. Hoping to try switching prednisone to dexamethasone and ride this regimen a little longer.

[NPfisherman]

Good plan and good results so far....you may ask if you can add indomethacin--see below:

ncbi.nlm.nih.gov/pubmed/277...

The switch to dexamethasone may buy you quite a bit of time, and with indomethacin....who knows ??

Best of luck....

Don Pescado

[Peterd110 in reply to NPfisherman]

Do you think indocin would work with zytiga? I’ve heard of the possibilities with xtandi. ??

[NPfisherman in reply to Peterd110]

Guess you didn't look at the link I put in my reply to you....

[Peterd110 in reply to Peterd110]

Should I do decadron with indocin? Or try one then the other?

[NPfisherman in reply to Peterd110]

I would do the decadron switch first, then if you're not 100% satisfied add the Indocin...

[Peterd110 in reply to NPfisherman]

Ahhhh..... I see. Thanks!!

[CalBear74 in reply to NPfisherman]

Don,

Great use of sophisticated cancer research journal.

[NPfisherman in reply to CalBear74]

UC Davis Urology...stuff done near you...I give abstracts frequently and those that want more info can pull up the full article....sadly, we will never see a phase 3 with abiraterone and indomethacin now that Abi went generic...costs too much to prove the point....if Abiraterone fails me, I will go the dexamethasone and indomethacin route to buy me more time....Squeeze these therapies until they are done, and in the meantime, new meds are coming...bromodomain 4 inhibitors, p300 inhibitors, A/B tubulin inhibitors...AR degrader, 3rd generation AR drugs, CAR-T cell vaccines.....The scene will change dramatically in 5 years...

Don Pescado

[j-o-h-n in reply to NPfisherman]

Mr. Walgreen Pharmacist.... I'll take a box of bandages, some cough syrup and a package of Giant size condoms... Can I ring it up at this counter or do I have to check out myself?

BTW the condoms are for my blow up doll.... Once I blow them up I want her to think they're her balloon children.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/10/2019 12:48 PM DST

[monte1111 in reply to j-o-h-n]

Did I read that right? You're going to blow some giant size condoms and then will need some cough syrup. The box of bandages worries me.

[j-o-h-n in reply to monte1111]

You slay me...... I said SLAY....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/10/2019 1:17 PM DST

[Peterd110 in reply to j-o-h-n]

My wife is a pharmacist. Wonder if I could get her to bring some home???

[j-o-h-n in reply to Peterd110]

Thanks for the offer, but I bought some novelty balloons in a dollar store... I think my Blow up Dolly will really get a gas out of them...

youtube.com/watch?v=HfxqQmW...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/10/2019 9:01 PM DST

[Peterd110 in reply to j-o-h-n]

Ooooooo. Marilyn!!

[NPfisherman in reply to j-o-h-n]

Didn't Mick Jagger have a giant blow up dildo he used to ride on stage....now that ought to put a light in Dolly's eyes....LOL....

Fish

[j-o-h-n in reply to NPfisherman]

Better check your vision, Mick Jagger is the dildo............ he's sponsored by snap-on-tools.

Dolly has the hots for Mick.... she refers to him as her HotMick...and somehow she refers to me as her HotRick..... now now let's not go there.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/11/2019 4:56 PM DST

[Longterm101 in reply to NPfisherman]

I hope your right Don as the scene hasn’t drastically changed in 80 years since Huggins finding in 1941

Praying for some drastic advancements

[NPfisherman in reply to Longterm101]

We have them courtesy of the Watson-Crick DNA model...BRD4 inhibitor ZEN 3694 is in Phase2.... BRD4 is one of the major drivers for HULLK and Prostate cancer....I posted on the new combo CAR-T cell infusion with a vaccine post infusion at MIT.....it was my last post... still replying though... Stereotactic radiation is new....VERU-111 is new, and ARV 110 is new....there are 3rd generation AR drugs in development, along with newer chemo, and newer inhibitors.... The scene changed a lot with the new lutamides and abiraterone.....PARP inhibitors and checkpoint inhibitors are being looked into...a big change from Huggins....

Keep praying and I will too...

All the best...

Don Pescado

[Tall_Allen]

PSA is still very low.

[Hidden]

I agree with switching to Dexamethasone. That will be what I do when my PSA starts rising again. Do keep in mind that you need another reason besides a rising PSA to change treatments. If it keeps going up, then it will be time to see if there is radiographic progression. At that time you could also do molecular testing to see if you have any gene mutations that have treatments available.

[Peterd110 in reply to Hidden]

Trying to keep that in mind and not fret too much. Feeling good and other labs are great.

[Hidden in reply to Peterd110]

That's great. It's hard not to overthink this, I know.

[Hidden in reply to Peterd110]

The dam Psa is an anxiety promoter.. yours is still very low .. keep swinging 💪

[Hidden in reply to Hidden]

I've had tremendous anxiety before this last blood test a few days ago. I got my results this morning. PSA is undetectable! I am now one year undetectable on Zytiga.

[Hidden in reply to Hidden]

Thanks for that great news’s..Go Zytiga! ..... oh yah ...keep on truckin ...... enjoy your day friend ... 🥳👏

[Hidden in reply to Hidden]

I think it's amazing really. I know we are getting ripped off on the prices of these drugs, but it's hard for me to hear people bashing "BIG PHARMA" when they are keeping me alive. When I try to put a value on the past year of my life, I come up with no words.

[Hidden in reply to Hidden]

I do bash big pharma although it is extending my life . For me it’s not just pharma it’s the entire industrial complex that controls everything that I’m not for . I’m a rebel without a cause ...of course I believe in climate and global warming too. pharma like all corporations is all about the bottom line and maximum profits . Nothing new in Capitalism . Insulin should be free to all. but yes,life is priceless.. especially once we get slapped in the face with a shortened life span . Live on and well wishes Gregg..😎

[tango65]

You could consider the trials of modified niclosamide and zytiga or enzalutamide. It seems niclosamide could resensitize the cancer to zytiga or enza.

clinicaltrials.gov/ct2/resu...

health.ucdavis.edu/synthesi...

They also have a trial of indomethacin and enzalutamide:

clinicaltrials.gov/ct2/resu...

[Peterd110 in reply to tango65]

Thank you!!

[tango65 in reply to Peterd110]

Best of luck on this journey.

[Peterd110 in reply to tango65]

Am I reading these wrong? Each trial states that previous treatment with that drug ( zytiga in the zytiga/nic trial and xtandi in the xtandi/nic trial ) is excluded. I don’t understand what they are trying to find . If a person in the zytiga trial has never taken zytiga, what big surprise is it that it will be effective??

[tango65 in reply to Peterd110]

Best way to clarify the situation is to talk with them you could also write them an email:

University of California Davis Comprehensive Cancer CenterRecruiting

Sacramento, California, United States, 95817

Contact: Mamta Parikh 916-734-3772 [e-mail]

Principal Investigator: Mamta Parikh

[Peterd110 in reply to tango65]

Great Got it done.

[BarronS]

I've been researching extensively for the last few days into PSA doubling time and when switching treatments is needed. I've been doing this because my Dads PSA has risen from less than 0.02 and is now at 0.06.

There is scant information about people with m1 and all of this information, but it seems that most clinical studies do not enroll until the person has over a 4 or 5 PSA value. It also seems that most doctors do not switch treatments until it reaches that level also. Unless you have a type of cancer that doesn't express much PSA.

Switching does sound like a very good idea. But just from looking at the studies, I was alleviated knowing that it is not the beginning of the end and you and my father have a very low PSA. Treatment is still working.

[Peterd110 in reply to BarronS]

Thank you!!!

[Hidden in reply to Peterd110]

Good news

[JoelT]

As usual all the comments have been spot on. There is a problem that sometimes, because of a PSA jump we end the use of Zytiga (and also Xtandi) too soon, thus as has been suggested you also look at radiographic progression. I would add that you also have an ARV-7 test to see if you have any of the RNA mutations. I did a great podcast specifically about this test, how and why it works. The test is covered by insurance and is very well validated.

[Hidden in reply to JoelT]

Thank you JoelT..

[Hidden]

Casodex? Avodart? Cabergoline?

[j-o-h-n in reply to Hidden]

I guess that woke you up..... Whereya been? Nice to see you....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/10/2019 12:39 PM DST

[monte1111]

Psa still pretty low. Hope dr. has something to stop the doubling. Best wishes.

[HopingForTheBest1]

Zytiga/Prednisone failed me after just six months. Based on precision medicine and genetic testing, I was changed to Olaparib since I am BRCA2+. My PSA has been undetectable after just 2 months on this med. I suggest you discuss having genetic testing with your Dr.

[Hidden in reply to HopingForTheBest1]

Great news ..HopingForTheBest1..way to be persistent ,keep flying low ..🥳

[Dash54]

Peter, I know how discouraging these numbers can be. I have been fighting this battle fo 6 years. There is a point where you will gain perspective. My PSA was 1084 at one point. I was thrilled when chemo dropped it 800 points. I never had my number get back to zero in 6 years. The point is it's all relative. To me your numbers look great. I am sure they will figure it out. I wish you all the best. Don't let the numbers freak you out. When mine first hit 40 I did freak out. I wish I could get back to that number.

[Peterd110 in reply to Dash54]

Thank you so much for your encouragement! It helps so much hearing from those who’ve been in this battle for a while. I have a 7 yo son, so I have so much to live for and hope to be around a while to see him grow

[Hidden in reply to Peterd110]

Live long Peterd110 to love that son. 🙏

[Dash54]

I have a feeling you will be around to see your son grow up. Stay positive, focus on what and who you love. You are not bvb your cancer.

[Sunshyn100]

My husband was on Xtandi for about a year or so then that stopped working then they did a treatment called Provenge immunotherapy that stays in your body for a while they added Zytiga after a few months but it didn’t do much as for lowering the PSA now they are going to try Xofigo a radioactive isotope shot . He’s off the Zytiga . Just keep trying what they have it was explained to us that the cancer kind of rebels and veers it’s ugly head he has Mets to the bones

then they need to try a new treatment

Good Luck keep fighting

[Hidden]

Hang tuff this APC is a bitch of a disease ,feeding on our manhoods and strengths . We can never let our guard down .. ✌️