ZYTIGA: Our Collective Experiences

I am just starting my 5th year of Zytiga. Through the ups and downs I have remained <0.01. So grateful to all those involved in clinical trials that brought this drug forward. And also grateful to all other ongoing clinical trials that bring new treatments forward every year.

Hi All;
Glad to hear the stories and successes you all have experienced in this journey we are all on.
Diagnosed at 73 (7/2021), metastasis in lungs (4, largest 1cm) PSA 50, G=7. Started Lupron 9/21, Abi Acetate (1000mg) and Prednisone (5mg) 10/2021.
PSA down to 2.7. SE; hot flashes, constipation, tired and hard to sleep. Not too bad. Liver function has been withstanding the drugs very well so far. Blood in normal ranges across the board
Take Costco sleep aid at night and that has been a big help.
I found a GoodRX coupon that brought the cost down to $260/month for the Abi until new insurance will bring down to $87/mo. in New Year.
Exercise 1 hour daily or ride exercise bike or walk the dog, So far so good.
The many posts I've read have given me a real sense of Hope! Thank you for sharing your lives with us all.
Merry Christmas,
Mike

Hello, Surveyor48 ----

I'm so happy to read your post --- and thankful you are doing well, following your diagnosis. Look at that downward trend in PSA scores! Tumbling down dramatically, in fact!

I wanted to reach out to you --- as we have common threads woven into our medical story --- I also had lung involvement in both lungs, when first diagnosed. My PSA was skyrocketing, and my treatments began at once.

I needed great doctors in my life --- and proactive, aggressive treatments. My treatments began the day I was diagnosed, back in 2013.

My family and friends were a tremendous source of support - but what I needed - above all else - was HOPE.

That sense of hope I now share with you today, Surveyor48!

Several of us banded together to create this thread when ZYTIGA was still a newer breakthrough medication. I was my doctor's first patient to give it a try.

Years later, I am thankful every single day for ZYTIGA --- and now its generic version --- ABIRATERONE ACETATE.

Thankful to read the stunning results you have already experienced with ZYTIGA.

Post here anytime --- we welcome you here as a compadre and brother, Surveyor48!

Here's to continued TREATMENT SUCCESS!

CYCLONE - # Iowa State University

Would love to know who on this thread has been on ABIRATERONE ACETATE and Prednisone the longest...It gives us newbies hope....

Been on 1000 mg of Zytiga and 5 mg of Pred for 2 1/2 yr, along with a every 3 month shot of Lupron. Started out with a PSA of 30, then the next test after surgery showed 45. That was a kick in the stomach as lymph nodes had become involved. So far good news with this treatment. Exercise helps the most with side effects. Do take fiber daily for the constipation.

Started Abiraterone Acetate (Zytiga) & Prednisone today..


Started in Arm A, which lasted about 16 months. (Below is the old info)
Then I took a break that lasted about 8 months.
PSA was steadly rising so Dr Tagawa put me back on the Degarelix injections.
Been on the second round for 3 months and they are not working any longer..
This is where I am now, starting Abiraterone Acetate (Zytiga) & Prednisone, lets see what happens next..

Nick


My PSA started to show up again in June of 2018@ 0.07, Jan 2019@ 0.14, April [email protected], July 2019@ 0.25, Oct 2019@ 0.36, Dec 2019@ 0.52
I was off treatment for about 3 years..
Dr Tagawa offered me this Clinical Investigation.
Arm A Degarelix
Arm B Degarelix + Apalutamide
Arm C Degarelix + Apalutamide + Abiraterone acetate/Prednisone
In a random selection I will receive one of these arm's for one year.
Monthly visits to Dr Tagawa for injection and blood work, plus weekly labs.

I'm near the end of my first month on Zytiga. I should receive a refill from the VA tomorrow or Saturday. Then have labs and follow-up appointment with Dana-Farber on Thursday. So far I've not noticed any SEs other than the minor occasional warm spells I've had with Lupron. I've checked my blood pressure a couple of times and it has been normal for me - 115 to 120 over 70 or so. Hoping labs on Thursday are also normal.

I had my follow-up labs today at Dana-Farber, a month after starting Abiraterone (Zytiga). Whoo-hoo - results are great. PSA is 0.05 - down from 0.55 a month ago. T is undetectable. Liver enzymes are well within normal range. PA said the fast PSA drop to near undetectable is a good sign for longer term efficacy of Abiraterone.

I've noticed no new SE's beyond what I was already having from Lupron - occasional warm spells -- but nothing really uncomfortable. And I think they may be primarily from the Lupron - they are much less frequent now than in the couple of weeks after my last Lupron shot. D-F faxed my labs to the VA pharmacy so I won't need to have duplicate labs at the VA.

Booted to the top, as we have compadres just now starting ZYTIGA (Abiraterone Acetate) this week.

Best to all,
CYCLONE - # Iowa State University

Hello, Onthgodiy ~

I'm sending you my positive thoughts, as you begin your new regimen with ZYTIGA.

As you know, many of us have now been switched over to the newer generic version ~ ABIRATERONE ACETATE ~ often due to our insurance providers.

I am thankful you found this thread. ZYTIGA was heralded as one if the new breakthrough medications when I was first diagnosed in 2O13.

It was not lost on me when I became my doctor's first patient to start on ZYTIGA. It's still helping me today. I'm picking up my 85th monthly prescription this afternoon.

There's 84 bottles lined up on my "gratitude shelf" ~ to mark my progress.

My birthday cake has more candles on it these days, needless to say!

I call it a game of "kick the can" ~ the game we all played in my neighborhood, growing up. Here's to "kickin' the can" down the road!

Along the way, let us know how you're faring on ZYTIGA.

Handshake, fellowship, and camaraderie ~
CYCLONE ~ # Iowa State University

Re-post from my I need another Zero Candy Bar post: (yes they still make them)
I got my blood lab test last Friday, all values looked good, especially the <0.008 PSA, Undetectable. That is actually 8 years and 3 months now, or 99 months undetectable!

That’s pretty good for an old dude who was told in 2012 with Stage 4 PC with bone metastasis, that I may have only three years left on this earth. I have truly received a lasting durable remission (though we know docs don’t like to use that word) but I do, and I shout it out!.

The good news continues as my new Oncologist at City Of Hope, L.A. (Dr. Tanya Dorff ) ordered a new pelvis, abdomen, and chest, CT Scan and also a Nuclear Bone MRI Scan. Testing mainly for a new baseline, as it has been 8 years since my last scans. The CT scan showed no evidence of soft issues invasion, and the MRI showed still the same small seven bone mets; in both femurs, each side of pelvis and in three ribs. I am feeling only occasional very pain in one rib, so good for now.

I never thought I would be still working at 67 1/2 years old, but going strong and plan on working until I am 68, then enjoy life to the fullest and count as a blessing every single day. I count this site as a blessing and hoping and praying for Healing Well for all.

Wings aka Dan in So Cal
P.S. Cyclone ISU-99 bottles of Zytiga/A/A on the shelf
P.S.S. Todd and Go Bucks - Keep the Faith Brothers.

Hello,

I just started Abiraterone. Any suggestions and what would you have done different if you were just starting.

I was just reflecting today, realizing ZYTIGA (Abiraterone Acetate) has been helping fellows for over a DECADE now ~ since it received full FDA approval in April 2011.

Even better ~ as more studies were completed ~ ZYTIGA (Abiraterone Acetate) moved up the line in the treatment landscape & became a Frontline treatment for many.

When I started ZYTIGA ~ you had to have had a series of chemotherapy infusions first. My chemotherapy treatment with TAXOTERE paved the way for me to start taking ZYTIGA.

I was the first fellow at my treatment center to start taking ZYTIGA. My oncologist believed so strongly that this newer medication could help me. It's still helping me today. Taking ZYTIGA is part of my morning routine.

Nowadays, it's comforting to know that fellows facing a new diagnosis of prostate cancer can begin taking ZYTIGA (Abiraterone Acetate) - in a context where their doctors have more background in prescribing this medication ~ and patient testimonials to share.

I know my oncologist often referenced my experience with ZYTIGA (without revealing my name) to encourage other patients. That meant a lot to me ~ because ZYTIGA was still relatively new when I got my first prescription.

So ~ for those of you just now starting ZYTIGA ~ we're here to encourage you and support you!

With my best ~
CYCLONE ~ # Iowa State University