Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

ZYTIGA: Our Collective Experiences

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3 4 5 6 7 8
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1825
Posted 6/8/2017 1:50 PM (GMT -7)

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"
profile picture
Thomasjohn
Regular Member
Joined : Mar 2017
Posts : 148
Posted 6/8/2017 1:59 PM (GMT -7)
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.
profile picture
Todd1963
Veteran Member
Joined : Oct 2008
Posts : 3443
Posted 6/8/2017 2:13 PM (GMT -7)
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.
profile picture
Wings of Eagles
Veteran Member
Joined : May 2013
Posts : 1042
Posted 6/9/2017 7:37 PM (GMT -7)
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
profile picture
Chask
Veteran Member
Joined : Jun 2014
Posts : 545
Posted 6/9/2017 9:46 PM (GMT -7)
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
profile picture
AdrienneA
Regular Member
Joined : Oct 2016
Posts : 21
Posted 6/10/2017 10:58 AM (GMT -7)
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
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/10/2017 4:33 PM (GMT -7)
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)

profile picture
60Michael
Veteran Member
Joined : Jan 2009
Posts : 2254
Posted 6/10/2017 6:40 PM (GMT -7)
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
profile picture
bayviewron
New Member
Joined : Sep 2015
Posts : 3
Posted 6/10/2017 11:03 PM (GMT -7)
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.
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/11/2017 5:03 AM (GMT -7)
If we must wait two hours after food to take Zytiga then we must wait another hour before food?

Did I get that right?
profile picture
60Michael
Veteran Member
Joined : Jan 2009
Posts : 2254
Posted 6/11/2017 7:55 AM (GMT -7)
Yes, that sounds right. At least that is how I do it.
Michael
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/11/2017 9:35 AM (GMT -7)
That was my take on it also.
profile picture
akai
Regular Member
Joined : May 2012
Posts : 277
Posted 6/11/2017 11:41 AM (GMT -7)
Should all the posts include the information on how the drugs are being paid for? Does insurance cover the cost?

Thx

MP
profile picture
kukukajoo
Veteran Member
Joined : May 2014
Posts : 619
Posted 6/11/2017 4:48 PM (GMT -7)
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!
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1825
Posted 6/12/2017 10:07 AM (GMT -7)

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"
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/12/2017 10:22 AM (GMT -7)
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.
profile picture
kmclark1
Regular Member
Joined : Mar 2014
Posts : 221
Posted 6/12/2017 10:56 AM (GMT -7)
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
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/12/2017 11:46 AM (GMT -7)
Mike,
May I ask what blood pressure was before Zytiga and after? Also, do you attribute hair loss to Zytiga?

Mr. Bill
profile picture
Annie88
Regular Member
Joined : Oct 2016
Posts : 177
Posted 6/12/2017 1:15 PM (GMT -7)
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.
profile picture
gmoose2
Regular Member
Joined : May 2015
Posts : 153
Posted 6/13/2017 2:06 PM (GMT -7)
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
profile picture
kmclark1
Regular Member
Joined : Mar 2014
Posts : 221
Posted 6/13/2017 3:15 PM (GMT -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)

profile picture
kmclark1
Regular Member
Joined : Mar 2014
Posts : 221
Posted 6/13/2017 3:42 PM (GMT -7)
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
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/24/2017 12:03 PM (GMT -7)
Just adding a bump to keep it active.
profile picture
DebbieMH
Regular Member
Joined : Jun 2012
Posts : 125
Posted 6/24/2017 12:44 PM (GMT -7)
I'm a bit confused .. is this approved for use in the US prior to chemo for PCa?
profile picture
mr bill
Veteran Member
Joined : Sep 2010
Posts : 829
Posted 6/25/2017 7:38 AM (GMT -7)
I was prescribed Zytiga after chemo. At that time I had been on HT for 6 months and Casodex was discontinued when Zytiga started.
✚ New Topic ✚ Reply
12345678




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.