Progress, I think.: I began this... - Advanced Prostate...

Advanced Prostate Cancer

20,782 members25,888 posts

Progress, I think.

Drphil1938 profile image
39 Replies

I began this journey in March 2019 with a diagnosis based on an MRI that showed a large tumor in 60 percent of my prostate and a migration to the seminal vessel,PSA of 99, April biopsy confirmed with a Gleason 9, bone scan confirmed mets in seven areas plus groin lymph nodes.

In May I began two weeks of Cosadex then a 3 mo shot of Lupron. Last week after 6 weeks I stopped Cosadex and began Zytiga. I just got last weeks results of the blood draw. T is now 12, down from 460 in May. PSA down to 18. I am having very few side effects, some fatigue but tolerable and an occasional hot flash. Does this sound like I am on a normal progression to arresting this scourge for a while.

Written by
Drphil1938 profile image
Drphil1938
To view profiles and participate in discussions please or .
Read more about...
39 Replies
Fairwind profile image
Fairwind

For a while..........You might investigate adding a round of chemo ..With G-9, you hit it as hard as you can with everything that's available to you..Investigate Provenge too.. Best of luck to you..

Drphil1938 profile image
Drphil1938 in reply to Fairwind

Ty

6357axbz profile image
6357axbz

I’ve been on Lupron for 8 months and Zytiga (abiraterone) for the last 3. Your numbers are consistent. My PSA is now at 0.1 but it’s peak was only 10+, GL 8 and only 2 bone Mets.

NPfisherman profile image
NPfisherman in reply to 6357axbz

While not everyone favors stereotactic radiation for oligometastatic individuals, I do and await Phase 3 trials...Phase 2 looks very good from reports...your fight....choose your weapons... to radiate or not to radiate....Whatever you decide, all the best to you....

Don Pescado

6357axbz profile image
6357axbz in reply to NPfisherman

So, what’s your current situation fish?

NPfisherman profile image
NPfisherman in reply to 6357axbz

Currently, I am on Zytiga and prednisone and Lupron..."undetectable" ...Thank God...and feel well....I had it done 6 months ago and plan to go back to see RO for a F/U...don't know if they will do f/u CT scan...It's the insurance most likely....won't pay... Hoping to hang this way for a while....

Fish

6357axbz profile image
6357axbz in reply to NPfisherman

I’m pretty much in the same boat (lifraft 😑) as you. Best if luck

NPfisherman profile image
NPfisherman in reply to 6357axbz

May our boat float forever.... Best of luck...watching the science and hopeful....

Fish

6357axbz profile image
6357axbz in reply to NPfisherman

Fish, my choices seem to be limited by SOC.

The trial I’m currently enrolled in gave me IMRT to prostate. I completed 30 days of radiation at MDA from a

6357axbz profile image
6357axbz in reply to 6357axbz

Top notch RO. That seemed to be something I would not have access to without a trial.

NPfisherman profile image
NPfisherman in reply to 6357axbz

It's what we do....play the hand we are dealt....I am growing broccoli sprouts--high in sulforophane.... many endorse them and TA says there may be some value....not a full endorsement from him but a "maybe"...

Fish

6357axbz profile image
6357axbz in reply to NPfisherman

Love u bro and your attitude.

NPfisherman profile image
NPfisherman in reply to 6357axbz

Across the screen hug, my brother... much love and respect...my fight started in October 2018....sounds like our timetable is about the same.... I'm a G8 too.... when you finish the MDA trial...you might be able to enroll in the stereotactic radiation trial for oligometastatic disease...

cancer.gov/about-cancer/tre...

Talk to your RO when this is over... Keep fighting !!! Never give up and never surrender !!! Remember--Fortis Fortuna Adiuvat .... Fortune favors the bold....

Fish

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

Interdum fortibus ire in foraminis

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/25/2019 6:29 PM DST

NPfisherman profile image
NPfisherman

You just started Zytiga last week with a PSA of 18.... It should go lower....wait a month and see.... at this point, you are on a new med regimen.... this may work great for you as it has many others....

Don Pescado

Tall_Allen profile image
Tall_Allen

Good early response!

Drphil1938 profile image
Drphil1938 in reply to Tall_Allen

Glad to hear from you, ot means a lot

tango65 profile image
tango65

You are having a good response on this SOC treatment. There is not difference in outcome between doing zytiga or doing chemo at this time. Best of luck.!!

Drphil1938 profile image
Drphil1938 in reply to tango65

Great to hear from you, in fact, all of you. This site and participants is a must for all PC guys.

paulparry profile image
paulparry

I agree with Fairwind. A G9 requires hitting it hard due to its aggressive nature.

It will always be a question of reacting to what the PCa does but anything preventative should be taken seriously.

Docataxel at this stage could provide huge benefits in the delay of any serious progression.

OK side affects but the alternatives are worse. If/when bone mets appear then its the start of pain management and the side affects of that.

MarkBC profile image
MarkBC

I am similar to you. Gleason 9, some bone mets and lymph nodes. Diagnosed a year ago. I continue on ADT but I did chemo for the first 4 months. Like you I had a dramatic drop in PSA to start. I went from 103 to around 2 in the first three months. After that the PSA has continued to decline but at a much slower rate. There were two monthly tests that showed no decline but just a plateau. My latest PSA is 0.17. Good luck to you.

Patrick-Turner profile image
Patrick-Turner

You have a fair amount of advanced Pca, and you are stuck with having to get whatever is available and chemo could be one, worth a try, and that will be a shock to your life, but I had 5 shots of Docetaxel and got through OK at nearly age 71. I was diagnosed in 2009, Gleason 9, but Psa only 6. But Psa increased with chemo so was deemed to have failed so I could buy 4 shots Lu177, which pulled Psa down from 25 to 1.6 now, while also on Enzalutamide.

I had lots of soft mets and bone mets which radiologist said are now healing.

I wish you the best of luck,

Patrick Turner.

lincolnj8 profile image
lincolnj8

I was in about the same condition as you are about a year and a half ago. Took Cosadex then on to Zytiga plus lupron shots every 3 months, plus monthly infusions for bone strength. PSA went from 800 down to .1 in about 6-8 months. Hot flashes, fatigue and loss of my super man strength was my side effects. Also taking Oscal 2 times a day and prednisone 2 times a day plus a multi vitamin. Prednisone raised my sugar so after a year I'm taking a pill for that. 2 years ago I never took a pill for anything. (Had yearly physicals). Now I'm told to take it easy lifting heavy things because my bones are brittle. I harvest firewood every year so have to watch what I lift. When I see my Oncologist, he just looks at my blood work, smiles and says that I'm doing great. My phosphate number was at 3000 and now is at 50 where it should be. I never had the option of surgery. Had the pin test and 4 weeks later ended in the hospital ER. Need blood and a 3 day stay to get back on my feet. Looking at life differently now and my only vice is ice cream (small amounts now). I wish you well and this is a great site for information.

whatsinaname profile image
whatsinaname in reply to lincolnj8

Why is "ice cream" a vice ?? If your blood sugar levels are within range, I would think ice cream is fine.

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

HOORAY.... HOORAY.... HOORAY

Chocolate chip ice cream (two scoops) three if

lincolnj8 is not watching.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/25/2019 6:35 PM DST

lincolnj8 profile image
lincolnj8 in reply to j-o-h-n

Good humor makes life smooth like ice cream..

j-o-h-n profile image
j-o-h-n in reply to lincolnj8

Yep and sometimes Rocky Road, like we're on.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/26/2019 10:36 AM DST

leo2634 profile image
leo2634

Been on Zytiga,Eligard 17 months now PSA 0.1 from 1st month treatment. I also get monthly Xgeva injection for multiple bone Mets. My Doctor just included Provenge to the treatment as an added boost in the fight. I finished my last round of it this past Friday. Zytiga has done great job as I hope it will for you.

Never give up never surrender. Leo

Tippler profile image
Tippler

Always check what Tall_Allen has to say. I read somewhere that consistent, slow improvements of the Lab.results are the good ones. Obviously, it is really important what your doctor says. Some guys change doctors continuously until they hear what they want to hear. Good luck!

Fitzbruce1 profile image
Fitzbruce1

I have 20 plus bone mets. I have been on Zytiga, Prednisone and Lupron for 10 months -and now Zometa for the past 4 months for bone strength. PSA is 0.02 and T is 16. Hot flashes, which my wife n I call Power Surges are much less frequent and severe. Life is pretty good but there is a fear of the Zytiga failing and then going from Castration Sensitive to Castration Resistant. That might be when I do chemo since I started immediately on Z, P and L.

Mentally you will probably feel less stress and sadness once you make this forum your ‘daily talk with a friendly n knowledgeable doctor/friend’ or so it will seem. The guys and gals on this forum give you so much info to ask your doctors!

Good luck! We are all here for you!

Drphil1938 profile image
Drphil1938 in reply to Fitzbruce1

I do listen and appreciate each of you. I enjoy hearing how each are doing and the process that got you there. I also appreciate the humor provided by J-O-H-N, we all need to laugh. Thanks.

lincolnj8 profile image
lincolnj8 in reply to Fitzbruce1

I'm pretty much on the same regiment as you are. And yes for me this is a great site for info and encouragement. Many fly with this beast for many years. In 10-15 years I'll be pushing 80, and many live that long with todays medicines. When I can't find the spoon for the ice cream, I'll know it's getting close. Good luck to you and remember "Chocolate Chip is the Best"..

Drphil1938 profile image
Drphil1938 in reply to lincolnj8

I'm pretty much a plain vanilla guy, once in a while, a little chocolate syrup.

lincolnj8 profile image
lincolnj8 in reply to Drphil1938

That'll work

Litlerny profile image
Litlerny

You are off to a good start to corralling the monster. Addition of early chemo might help. Keep it up, and stay positive! 😎

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

Drphil you're filling the bill. Good going....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/25/2019 6:40 PM DST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

Ty

larry_dammit profile image
larry_dammit

Good luck fighting the monster 👍👍🙏🙏

Drphil1938 profile image
Drphil1938

TY all encouragement needed. 😛

You may also like...

How can I be sure that cancer is not progressing

therapy. Path report showed Pt3b, SVI, gleason 8 with tertiary 5. Psa recurrence 5.5 years ago,...

11 months of vacatión and going strong, I think

return to ADT when PSA reaches 6, then go back on vacatión once I get my PSA back down to point...

I think this is the beginning of the end.

9 months into my father being on zytiga and prednisone and his PSA came back today at 0.06. It has...

Husband thinks PSA undetectable means cancer is undetectable...I think not

bring you up to date..2018 Gleason 10,mets,lupron chemo,gene mapping nothing,zytiga gene mapping...

Progression

volume, low PSA Oligmatistic. Can someone translate. I had a PSMA scan a couple of weeks ago and...