ZYTIGA: Our Collective Experiences

Hello !

In the interest of gathering up-to-date, informative, first-hand experiences with ZYTIGA, I'd like to start off this thread, in the interest of helping others who may want insight.

ZYTIGA was first approved by the F.D.A. for advanced prostate cancer usage AFTER chemotherapy in 2011.

In 2012, its usage was further expanded to include use BEFORE chemotherapy.

Recent news indicates that ZYTIGA may play an ever-increasing role as a front line medication for advanced prostate cancer, in specific cases.

Doctors and researchers are STILL finding ways to increase the efficacy of ZYTIGA ... it is still considered one of the newer breakthrough medications that has emerged in the past decade to treat advanced prostate cancer.

ZYTIGA is taken daily, on an empty stomach.

A dose consists of four white "chalky" pills, taken consistently on a DAILY basis.

If ZYTIGA is prescribed, then two small steroid tablets (such as PREDNISONE) must be taken each day, as well.

Here is my first-hand experience with ZYTIGA ...

A few months after a series of TAXOTERE chemotherapy infusions, my oncologist suggested that I start taking ZYTIGA to help keep my P.S.A. suppressed, to a greater degree.

My chemo treatments had helped knocked my P.S.A. numbers down to low decimals.

Once I started on ZYTIGA, my P.S.A. went down to the LOWEST LEVEL I had ever experienced, since starting prostate cancer treatments !

I'm a school teacher and I started ZYTIGA at the beginning of a new school year.

Within a month, my oncologist suggested that I show up for some lab work, to see if we could see if ZYTIGA might be having an initial impact on my P.S.A. score --- sure enough, within the first month, my P.S.A. began dropping. It seemed like a day of small miracles !

Since then, I have remained on ZYTIGA ... it has now carried me through two entire years of full-time teaching, for which I'm grateful.

Hoping to hear from others, who have their own first-hand experiences with ZYTIGA to share ... in the interest of helping others, now and in the future.

With all my best,
Iowa State University "Cyclone"

---

PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing
My "Survivor's Story": www.yananow.org

ISU,
Excellent thread as most are with assisting others.
I have been on zytiga since February this year. It has not work so well for me. Sept 2016 my psa was 7 then January 14 and now 20. I have blood draw next wednesday then results the week after to see where the psa is. I get my lupron injection then also. Iam very happy it knocked your psa down.

---

age 65 diagnosed 10/2013 current psa 20 been on lupron since 2/2014 started xtandi 1/2016 now started zytiga 2/2017 gleason 8, mets through lymph nodes into several places in spine, pelvis, ribs, sternum, occipital, femur. tumor attached to prostate, prostate 210 grams. provenge therapy 6/2016.

This is a great thread. Thank you for starting it.

17 months after completing Provenge, my PSA had reached twenty something. I was asymptomatic so probably could have waited but I opted to start Zytiga. That was 46 months ago and my PSA is still in the zero range.

Side effects have included fatigue, occasional mild nausea, and a tendency to bruise easily. The side effects are easy to deal with and it has been a smooth ride.

---

DX 2006 age 42 PSA 3216 stage 4 Gleason (3+4=7 ) Lung, Bone, and Lymph metastasis
A.D.T. 5-1/2 years. Provenge, Zytiga, D.E.S.
Latest Bone scan, C.T. scan, and chest X-ray clear. Current P.S.A. <0.05
53years old
Todd's blog
Twitter @seals_todd

Thank you ISU Cyclone for starting this thread. I will be a willing "bumper" to keep it in view of posters.

I was diagnosed 11/2012, PSA 71.5, Stage 4 with 4 met spots on pelvis, femur and ribs.
Lupron was effective for a seven months, driving my PSA down to 0.10.

After the eventual sharp rise in PSA in August 2014,I asked my Onc about Provenge. He informed me he would prefer me to start right away on Zytiga, and that my Insurance would not approve Provenge and Zytiga in the same year..So we added Zytiga ,4- 250 mg pills plus Prednisone 5mg twice per day, also still on Lupron at the time. Apparently, My Docs also did not realize that studies show that the Chemo drug Taxotere could have been given as an added benefit in the long run, prior to me start of Zytiga. In any case, my PSA dropped dramatically to undetectable within three months. The Docs refrain from the word "remission" but there is where I see myself. For this I have an ongoing love affair with this powerful, effective new friend of mine.

I have tolerated it well and remain undetectable for the past 31 months. Like my friend ISU Cyclone, I have kept every empty bottle in my cupboard, as a benchmark, and reminder of how fortunate I am. Only occasional, additional fatigue and hot flashes noted. No pains at all from the bone mets. I also get injections every 3 months of Xgeva, Currently I am on a "Lupron Vacation"

Fortunate indeed that this staggering price of $102,000 per year drug , Zytiga, is covered by my Insurance for the most part, aside from my out of pocket $4,000 and monthly $200 payment for the policy. Fortunate that I am working , and my employer pays the other part of my cost. My heart goes out to those that are unemployed and/or do not have Insurance.

I know the pain of not having any Insurance when I was unemployed, and that is how my predicament began, But aside from this and that, I have also seen the drug not be effective for my dear friend whose PSA did not drop, and he could not tolerate the side effects. I am waiting patiently for the clinicians to find added combinations that work for more patients and work more effectively.

In the meantime, I enjoy every PSA result, and have gotten to the point were I am confident each time to tell the Doc, before he gives me the result, "I already know the result , and it is good". I told Todd I might catchup to his monthly total of being undetectable, his is currently at 46 months. However, he correctly pointed out that he hopes I never catch up to his monthly total. I will never catch him as long his remains undetectable also, 15 months from now he will be at 61 months undetectable!. So, I stand corrected. We are both looking for that durable long lasting remission. Positive outlook is also a strong medicine. That and keeping the faith!

Wings of Eagles, aka Dan Kasper, in very warm 90 degree Hemet, So Cal

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DX PCa -11/04/12,age 57=Biop-GS 3+4=7 and 4+3=7 w/mets PSA=71.2 start Lupron ,

1/13=2.7 2/13=0.67 3/13=0.16 6 /13=0.10
9/ 13=0.7 11/13=1.43 12/13=2.7 4/14=2.7
6/14=3.77, 8/14=5.25 Zytiga:
9/14=1.46 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06

Post Edited (Wings of Eagles) : 6/25/2017 10:11:59 PM (GMT-6)

I would also like to add my thanks to ISU-CycloneFan for starting this thread.

I am not yet taking Zytiga, so cannot contribute, but I expect it will be in my armoury down the track. The recent research showing it's effectiveness at an earlier stage is also of great interest, but unfortunately here in Australia it cannot be prescribed unless you have already been on Chemo (or proven that Chemo cannot be taken - ??).

It is already very encouraging to see the excellent results being experienced by most guys as described above. Long may it continue to be effective and thanks again ISU.

Chas

---

Age now 72
Dx 07/13 PSA 7.1 at age 68
08/13 LRP Path: Gl 4+3 ter5 mgn +, SV, LN Neg, pT3a N0 Mx
11/13 PSA .07
12/13 12 month ADT
Continent
01/14 37 EBRT
05/14 Incontinence back
11/14 Retentive. SPC installed
12/14 ADT Break. 05/14 - 09/15 PSA <.01
12/15 .01 03/16 .03 O6/16 .09 09/16 .53!! 11/16 .54 12/16 .71
03/17 2.6
04/17 ADT restart

Thank you ISU-CycloneFan for starting this thread. I am posting a comment so that I get updates.

My husband is just shy of one year since diagnosis. He's had Docetaxel and is currently on Lupron + Casodex. His PSA was over 400 at DX, now down to 1.08 but I know our MO would like to see it lower. Last visit he mentioned Zytiga, so I expect we'll talk about it at our next meeting. Very encouraging news from the latest studies!

I look forward to hearing from others.

--Adrienne

---

Age 61, DX July 2016, PSA 402;
Bone scan 7/16 "innumerable" lesions;
8 core biopsy: Gleason 4+3; R=10mm, 7mm, 5mm, 2mm, 40%; L=3mm, 5%
Eligard + Casodex
Taxotere 7/16 6 cycles
PSA 7/14: 335; 7/20: 180; 8/1: 48.2; 8/24: 6.76; 9/14: 3.33; 10/5: 2.48; 10/25: 1.77; 1/16: 1.43; 12/12: 1.93; 1/11/17: 2.02; 4/5: 1.48; 5/3: 1.41
5/24: 1.08
Zometa monthly

Cyclone - I would also like to express my gratitude for this informative topic. I just finished 6 sessions of Taxotere a few weeks ago. Still wondering when SEs' will go away. Med. Oncologist suggested Zytiga along with Lupron. I have been doing Casodex/Lupron since last December.

I do have a question. I received their (Zytiga's) welcome package and instructions. Seems like we have to take meds one hour before or two hours after food. Has anyone gotten any input into a cup of black coffee before taking Zytiga? My understanding is it must be black (no cream or sugar not even a wee bit of Baileys).

Anyone else hear that?


I guess this all started over the Stampede and one other trial.

Post Edited (mr bill) : 6/10/2017 5:38:34 PM (GMT-6)

I do not know the answer to your question Mr Bill. Since I use creamer I just wait the two hours before taking the medication. It seems like I have been on Zytiga for twenty-eight months. I take the prednisone and lupron as well as Zometa infusion every two months.

I have noticed over those twenty eights months that I have withdrawn a great deal from social activities. The fatigue has played a part in that, but I also have to take meds for nocturia. So sleep is sometimes hard to come by. However, most mornings I take my three dogs on a sixty to seventy minute run. My wife use to alternate days with me and she would walk them so that I could do weight training. She is noe busy with other things, so it is up to me to exercise the dogs. At 68yo I am lucky to still be able to run.

It is amazing to me that some of you are still able to work. I was a Family Therapist and there is no way that I could still be able to do that with my lupron clouded thinking. And with prednisone I have to be very careful when I become fatigued, with what comes out of my mouth. Glad to be alive, just wish that I didn't have to take all of these meds.
Michael

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Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7mpost SRT PSA.27 12 m.19, 21 m.27,May 2013 PSA 27 Mets,began HT, Ztyiga 3/10/15

Great thread ISU
I started on Xtandi in Dec. 2015. Xtandi was causing me vision problems by May 2016.
Stopped Xtandi and vision was much improved. To check if Xtandi was the problem we restarted
it in Aug. 2016 and again had vision problems. Ended the Xtandi in Sept. 2016.
Started Zytiga two weeks later. Still on Zytiga at present.
So what is the comparison: Xtandi worked better to lower my PSA (.29 to .04) but had noted side effects.
It cannot be taken by anyone with a history of seizures.
Zytiga did not lower my PSA as much (.20 to .16 {low} to.83 to 1.8) This was over 7 months.
The side effects on Zytiga were better for me. Had all the bad side effects from the Prednisone
weight gain, sweating and etc. You will need to have blood work to check for liver function.
These are both miracle drugs and I'm happy we have them.

If we must wait two hours after food to take Zytiga then we must wait another hour before food?

Did I get that right?

Yes, that sounds right. At least that is how I do it.
Michael

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Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7mpost SRT PSA.27 12 m.19, 21 m.27,May 2013 PSA 27 Mets,began HT, Ztyiga 3/10/15

That was my take on it also.

Should all the posts include the information on how the drugs are being paid for? Does insurance cover the cost?

Thx

MP

---

Age 59 as of 2013
PSA 2003=1.5, 2005=1.3, 2007=1.9, 2008=1.8, 2010=2.3, March 2012=3.1, May 2012=3.35, May 2012=3.6, several differnt Labs and Assays
Bx and Dx Aug 2012 = 3 of 14 cores all G6 (USC and City of Hope Path), Follow AS,
After Dx with PCa
Three months - PSA Oct 2012=2.5, Nov 2012=3.16, Nov 2012 2.1, three different Labs/Assays
Six months - PSA Feb 7, 2013=3.29 (up from 3.16)

I can't thank you enough for starting this thread. We just found that Paul's cancer is on the move and he is officially castrate resistant with his 4th rise in PSA. Soon as he stopped the taxotere it started to creep up again. Although it is still only 0.33 it may as well be 3300 in his mind. The innumerable mets returned to his lungs with some at .7 cm and those are all new. More lymph nodes, too...

So I had a talk with Med Onc on Friday- she said think about Zytiga or Xtandi next and will meet with her NP next week probably as the onc is going on vacation.

Todd- I am interested in your Provenge before Zytiga.... How did you get that approved? My understanding is that it was for afterwards... I remember reading your plight and fight- was it for that? We may be dealing with the same insurance and issues.

Best to you all!

---

Paul 2014 dx age 47:
PSA 4/4 84.61 5/27 115.07 10/31 0.32 11/21 0.36
BX 5/8- 12/13 cores nearly 100% 3+4 & 4+4 PNI
CT abd/pelvis: 5/28-lymph
Bone scan 5/27- clear
CT Chest 5/29- innumerable mets both lungs
Bostwick adds 5% pattern 5
Stage T2cN1M1c
lymph mets neck, other
june Lupron added
7/3 Taxotere 1 infusion then GI & Cardiac issues
11/14 CT abd- lungs clear now
Bone, liver, lung, lymph inv

Hello,

To answer the question about financing the cost of ZYTIGA ...

In my case, my oncologist submitted the prescription through my work insurance.

In the end, my monthly cost is sometimes free or just a $10.00 co-pay. I have a "Cadillac" insurance plan at my place of employment.

There ARE foundations which can also help patients help finance the high monthly cost of ZYTIGA.

Your clinic can help you work through any paperwork that is required.

All of these newer breakthrough medications come at a high price, to be sure.

The current cost for a month's supply of ZYTIGA is right around $9,000 per month.

Because of the high value of ZYTIGA, mine has to be shipped to a designated location each month.

In my case, I have it shipped to my work, where the office secretary SIGNS FOR IT upon delivery. That is essential.

When I am traveling, I have had it shipped to a pharmacy, where I pick it up. ZYTIGA is sent out from a specialty pharmacy to your home, your place of work, or a pharmacy that you designate in your area.

It's important to note that ZYTIGA must be stored at room temperature.

That's why I have it shipped to my place of employment, where the office secretary can sign for it.

Because of the high cost of the medication, make certain that you require a SIGNATURE upon delivery each month. That little prescription bottle is worth about $9,000 and you want to make certain it gets delivered correctly.

When running low on your prescription, plan ahead --- with weekends and holidays on the calendar. This can impact shipping dates.

The pharmaceutical company that ships my ZYTIGA has a customer care telephone number. They also send me online reminders each month, reminding me to re-order ZYTIGA in a timely manner.

I also remember the "room temperature" consideration when I am traveling in the winter time --- putting my bottle of ZYTIGA in a suitcase and throwing the suitcase in the trunk during the cold weather is NOT a good idea.

Consider this, as well, if you are flying to a destination. Due to the high cost of the medication, I think it's best to keep ZYTIGA in a safe spot while traveling. You wouldn't want your ZYTIGA medication lost in baggage claim at the airport !

Something to consider and remember when you are traveling in the winter time!

It's important to not skip a daily dose of ZYTIGA.

I have it built into my morning routine, first thing in the morning. I know other fellows who take it at bedtime.

You just have to remember the "no food two hours BEFORE taking the pills, and no food for an hour AFTER taking the pills."

Some more insight to share today,
Iowa State University "Cyclone"

---

PSA At Diagnosis In Year 2013 : 138
Initial Diagnosis: Advanced Prostate Cancer, With Metastases In Both Lungs
Age At Diagnosis: 48 years
ADT Treatments: LUPRON, FIRMAGON, and currently ZOLADEX
Subsequent Treatments: Chemotherapy (TAXOTERE) & now ZYTIGA
Additional Consultant - Dr. KWON - Mayo Clinic
Current PSA Level: < 0.50, Treatments Ongoing
My "Survivor's Story": www.yananow.org

For you coffee lovers. Med. Onc. said cup of coffee with NO sugar, honey, milk, etc. (only black) within that one hour is OK. Pharmacist also told me the same. You may want to check with your medical team to ease your mind. I am just glad for that cup of coffee.

Zytiga is my friend and my enemy. Over the last two months, PSA is down from 4.5 to 1. Just started a blood pressure medication. Currently the fatigue is bad but have not been able to quantify it as worse than Lupron w. casodex. The only thing I have noticed is that it is harder getting out of bed in the morning.

Still no hair growing back (still have it on my head and around my private area) but gone everywhere else. No bone pain.

Hope you are all well.

Mike

---

DX 55 Yrs Old - T4,N1,M0
11/13 - PSA 130, MRI BX -8/8 cores positive -G8 (4+4), BS Mets spine hips ribs, No Symptoms
11/13 - Firmagon, 12/13 Trial S1216,1st Lupron, Casodex
12/13 53, 12/13 7.45, 12/13 6.39, 1/14 2.36, 3/14 0.78 3/14 0.76 6/14 0.23 10/14 0.18 6/15 0.08, 9/15 .11, 12/15 .13 3/16 .14, 6/16 .17 9/16 .29 12/16 .7 4/17 4.5
B S - Healing reduction of Mets 12/15 &12/16
Zygita 4/17

Mike,
May I ask what blood pressure was before Zytiga and after? Also, do you attribute hair loss to Zytiga?

Mr. Bill

Here's an abstract from a study in which they examined the factors related to duration of benefit of Abiraterone.

Prostate Cancer Prostatic Dis. 2016 Dec;19(4):398-405.

PREDICTORS OF DURATION OF ABIRATERTONE ACETATE IN MEN WITH CASTRATION-RESISTANT PROSTATE CANCER.

McKay RR1, Werner L1, Fiorillo M1, Nakabayashi M1, Kantoff PW1,2, Taplin ME1.
Author information
Abstract

BACKGROUND:
Androgen receptor signaling remains important in castration-resistant prostate cancer (CRPC) as demonstrated by the efficacy of abiraterone acetate (henceforth abiraterone) in phase III trials. Given that heterogeneous patient responses are observed, we sought to identify clinical factors associated with duration of abiraterone.
METHODS:
We retrospectively identified patients with CRPC treated with abiraterone in our database. Patient characteristics and types and duration of prostate cancer (PC) therapies were analyzed. These parameters were analyzed with duration of abiraterone in univariate and multivariable analyses.

RESULTS:
We identified 161 patients who had received abiraterone. All had received primary androgen-deprivation therapy (ADT), 86% prior secondary hormone therapy (SHT) and 33% prior chemotherapy. The median duration of primary ADT was 23 months, duration of SHT (excluding abiraterone) was 17 months and duration of chemotherapy was 8 months. We demonstrated that lower PSA at abiraterone initiation, longer primary ADT duration, no prior ketoconazole, no prior chemotherapy and longer chemotherapy duration were associated with a longer duration on abiraterone in univariate analysis. In multivariable analysis, duration of primary ADT (duration of abiraterone 9 versus 13 months for ⩽12 versus >12 months, P=0.03) and no use of prior chemotherapy (duration of abiraterone 16 versus 7 months for no versus yes prior chemotherapy, P<0.01) were associated with duration of abiraterone.

CONCLUSIONS:
Several clinical parameters, including type and duration of prior therapy, are predictive of responsiveness to abiraterone. These parameters are logical and correlate with smaller disease burden or less exposure to PC therapies. This information can help physicians counsel patients about the potential durability of efficacy of abiraterone. Identifying predictive biomarkers that inform patient selection for therapy is critical to optimizing treatment outcomes.

---

Husband diagnosed Sept 2016 (symptomat
PSA 28, GS 4+5 (pos all cores) N0, M0, cystoscopy revealed visible cancer at bladder neck
Firmagon Oct 10
PSA
Oct 20: 5.38
Nov 18: 1.69
Dec 12: 1.98
Dec 16: 2.05
Jan 17: 2.33
Added 50 mg Casodex/Bicalutamide
Jan25: 1.09

RP Feb 10 pT3bN1M0- remained on Casoden + Firmagon
all PSAs since surgery undetectable

Adjuvant radiation planned for May 25

I have been on Zytiga since October 2016 when my PSA peaked at 178 after failing Lupron/Casodex. I have responded splendidly and my PSA as of June 8 was down to 1.1 and still falling. I generally feel about the same as I did when on first line hormonals, but the fatigue comes a bit easier. My insurance, CIGNA thru the marketplace, pays everything. Looking forward to a VERY long enduring effect from this drug, I sure hope.

--Charley

---

Dx 03/15 at age 53
PSA 121, Gleason 8, spine mets, rib mets, lymph mets
Prostate size - 5.5cm x 5.3cm x 5.6cm
04/15 Tx was Lupron and Casodex (control arm of TAK-700 clinical trial)
12/15 PSA nadir .9
09/16 failed first line HT peak PSA 178, new mets in skull, right thigh, stopped Casodex and trial, started Zytiga
10/16 spot radiation cleared up spine pain
03/17 Zytiga has PSA down to 1.7

Mr. Bill

Onc is saying blood pressure is from Zytiga.

Hair loss from having no testosterone. No change in body hair since I started taking Zytiga. THought it would be interesting to see if there was any changes. Also noticing that the hot flashes are back.

BP from 145-135/ 85-75 to 165-155/100-90. Bad.

I am currently on Tufts and live in Massachusetts. The Zytiga costs me nothing and is not used in my deductible/out of pocket costs.

Post Edited (kmclark1) : 6/13/2017 4:20:40 PM (GMT-6)

Article in Wash Post.

https://www.washingtonpost.com/national/health-science/drugs-score-big-wins-against-lung-prostate-breast-cancers/2017/06/05/0a946de2-49e3-11e7-987c-42ab5745db2e_story.html?utm_term=.5d1fc7603b7a

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DX 55 Yrs Old - T4,N1,M0
11/13 - PSA 130, MRI BX -8/8 cores positive -G8 (4+4), BS Mets spine hips ribs, No Symptoms
11/13 - Firmagon, 12/13 Trial S1216,1st Lupron, Casodex
12/13 53, 12/13 7.45, 12/13 6.39, 1/14 2.36, 3/14 0.78 3/14 0.76 6/14 0.23 10/14 0.18 6/15 0.08, 9/15 .11, 12/15 .13 3/16 .14, 6/16 .17 9/16 .29 12/16 .7 4/17 4.5
B S - Healing reduction of Mets 12/15 &12/16
Zygita 4/17

Just adding a bump to keep it active.

I'm a bit confused .. is this approved for use in the US prior to chemo for PCa?

---

Husband:
Diagnosed 4/12; PSA 177; G9 (5+4); some bone mets
Eligard + Casodex 4/12
Radiation 8/9/12 - 10/5/12
HT stopped 3/12/14
HT restarted 2/3/15; stopped 8/15
HT restarted 4/16; stopped 11/16
HT restarted 5/17
BRCA2 Gene

I was prescribed Zytiga after chemo. At that time I had been on HT for 6 months and Casodex was discontinued when Zytiga started.