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Anyone else on abiraterone (zytiga)?

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Posted 9/7/2011 9:40 PM (GMT 0)
Hi: My husband is going to start on zytiga in a couple of weeks if all funding goes through . Just wondering if anyone else has been on this and what was their experiences.
thanks for any input.
Posted 9/7/2011 10:53 PM (GMT 0)
Best of wishes with the new treatment!

I will be following your updates closely.

Be blessed...
Posted 9/7/2011 11:59 PM (GMT 0)
Hello-I noticed in your post the mention of funding. I am not sure where you are located, but wanted to let you know that this July, I was offered zytiga as a trial at MD Anderson-Houston. Zytiga was at no charge, but everything else in the trial was not.

I opted not to try the trial because I wanted to be treated in San Antonio and did want to hang around Houston for ongoing observation. Best wishes.
Posted 9/8/2011 3:23 PM (GMT 0)
Hi: Actually I am from Canada and the drug is totally funded through a test program. it just had to be approved and we got notice yesterday that it is approved and husband will start next week.

Still looking for any one out there that has been on the drug.
Posted 9/8/2011 4:24 PM (GMT 0)
My father started on the drug about 3 weeks ago. He is tolerating it fairly well, but we don't have information yet about how effective it is. When I have more information, I will provide an update. He was originally treated with radiation in 1991 at age 58 (Gleason 7), followed by HT a number of years later. He has been through two other chemos before this current medication.
Posted 9/8/2011 7:18 PM (GMT 0)
 

There was an article in our local paper's health section today about how well trials are going on with a  smallpox like virus treatment in California in treating advanced PC and other cancers.  The article says this treatment is showing promise in cases where abiraterone  is not as effective for some PC.  They hope to get FDA approval  by 2013. If this is as promising as this article says there is more hope for advanced PC treatments in the next couple of years.

Terry TWG

Posted 9/8/2011 8:08 PM (GMT 0)
kak

I just got off the phone this afternoon with a gentlemen that lives in Payrump, NV and he is on it. If you want to send me an email I will be happy to provide you with his contact information so you could either email him or call him and see if he is willing to talk. He was very generous with me with his past experience with a trail study that we both were on and we exchanged notes and experiences. I am sure he would be willing to talk to you and give you his experience with it. I am not sure how long he has been on it, but probably not too long.

My best wishes and hopes for you and your husband on your jouney.
Posted 9/9/2011 5:18 AM (GMT 0)
kak,
Best of wishes to your husband in his treatment. Please keep us posted of his progress.

Startech,

Interesting! Med-Onc just told us today that they wanted to put my husband in that trial, but when lymphs tested postive, he was automatically excluded.

Terry,
I was reading about that last night. Very interesting stuff.
Posted 9/14/2011 7:25 PM (GMT 0)
My father was diagnosed with Stage 4 Prostate Cancer 3 years ago. He has undergone hormone therapy, radiation, and chemotherapy. Eventually, each of those treatments stopped working. In June, he began taking Zytiga.  When they performed scans and took his PSA at the end of July, there was no change. He is going for scans this week and will be speaking with the doctor next week to see if it is working for him. He has had some symptoms that I am wondering if are a side effect of the Zytiga or just something related to the cancer. For the past month, he has had enuresis which has now progressed into enuresis and encopresis. He has no control or awareness of when he needs to go to the bathroom. Is anyone else experiencing these side effects?? I would really like to hear from anyone else on this medication and what their experiences are. It is difficult to find information due to the newness of the medication.
Posted 9/22/2011 12:29 PM (GMT 0)
Hi all,
My first posting here, just a short note... my father (born 1931, prostate cancer since 1994 - see http://www.myprostate.eu/?req=user&id=364 for details and PSA graph) is on Abiraterone since January, initial PSA was 1390, and it dropped down to 200 within a month. Meanwhile it climbed again to 360, but phosphatase is still gong down and he's feeling much better, gained 10kg weight. For us it was definitely a success story, of course we're also worried of what to do when it stops to work. There were no adverse side effects. But the oncologist told us that the drug was not so successful in all cases, we seem to have been quite lucky this time (not so lucky with docetaxel last year).
Andy
Posted 9/22/2011 1:18 PM (GMT 0)
My husband has been on Zytiga since May.  (Dx 1/2007, Gleason 9/10, PSA 174).  He has not seen a dramatic PSA drop but the rise seemed to have leveled off.  His onco. recently added low-dose Cyclophosphamide which is an unconventional  treatment "cocktail".  Last month saw a PSA drop and we are hoping this will continue. 

He has had few if any side effects from the Zytiga and liver function tests have been normal.  He feels well and is very active. 

Good luck - the Zytiga seems to greatly improve QOL for many men.

Posted 9/29/2011 7:45 PM (GMT 0)
I am new to this forum ... I am interested in others that have been taking Zytiga and perhaps similiar to me ... I was diagnosed with advanced prostate cancer 11 years ago. Stage IV ... age at the time 47 ... my initial PSA was 4,900 ... metastasized in the bones at that time ... currently I still have mets in the bones, and also a cancer mass in the pelvic area ... J stent in place .... I have been treated with docetaxel for many years along with Lupron, and a few other things as needed ... recently I have been taken off of docetaxel and put on zytiga about a month ago .... my psa today is 427 ... it had been mostly between 800 and 1000 in recent years. I have PSA tested every month.

 

 

Posted 9/30/2011 3:38 PM (GMT 0)
Henry, thank you for joining and posting. Your experience humbles me greatly.

For most of us our great question is how, and for how long, can we manage this disease. Your experience shows us that at even a very advanced stage there are effective means of management.

I would be very interested in learning about the professionals that have been treating you. Obviously they have been effective and could be of interest for many on this board for future treatment plans and assessments.

Welcome and thank you for sharing.

Thanks also to Klayman and Ashland79 for joining and sharing experiences.    This is what makes this board great.   We learn from those that have gone before us and I  greatly appreciate learning from their experiences.

Jack

Posted 10/1/2011 6:01 AM (GMT 0)
In response to last posting, as far as the professionals that have been treating me for the last eleven years ... I use a local oncologist group (I live in New York on Long Island), also a local urologist that takes care of my J stent (I have had numerous operations over the last 3 years for the J stent, it has to be replaced about every 4 - 6 months, sometimes I develop infections from it which is common) ... the J stent is in place because of the urinary issues from the mass in the pelvic area.

 

I have found that once a person has advanced prostate cancer, late stage, and hormonal resistant, there are not too many options. Unlike early stage prostate cancer (like stage 1 or 2) where treatment options can be confusing, and where sometimes doing nothing, or watchful waiting is the best option ...

 

I have found my oncologist group (they have their own practice) are fully informed of what treatment options are available. I didn't find the need to go to one of the large, highly advertised cancer centers. I have found that a local oncologist is usually well informed and probably the best option, and where I go they also do the chemotherapy at the office ... they have a chemo room. I have spent 4 years in the chemo room going just about every week.

 

I was on a 3 week cycle with Taxol and Cytoxan ... once a week, then one week off ... but, I went in the week off also to check my blood levels (they check my CBC every week).  I often receive Procrit for the low hemoglobin count, and sometimes Neupogen for the low white blood count.

 

I also have been on Lurpon (Eligard) for 11 years (4 month injection), and Zomenta every 3  months (for bone's) .... plus, I have had many radiation treatments for the various areas of the bones that have 'hot spots', or cancer mass ...

 

I recently started Zytiga ... as with all treatment options at this point ... it is palliative in nature. I am just curious about how long the efficacy of the drug may work ... it the only benefit of the drug is lowering of the PSA for a while, that doesn't necessarily improve the situation of the patient. Once the cancer has advanced the PSA is not as important in the overall health of the patient ... it is my understanding that the PSA is more of a diagnostic tool. If a person's PSA is either 400 or over 1000 at the advanced stage it doesn't really matter in my opinion ... the very high level doesn't change the disease ... that is my observation.

 

I am just wondering if there is any real benefit to the drug Zytiga. I know this Zytiga was only FDA approved last spring ... I guess there are not long term studies (other than the trials) to see what happens to patients. The only promotion of the drug is that it can bring down the PSA level ... I am just questioning how this Zytiga helps in other ways ... I have my doubts. I know it is palliative, and not a cure ... but, does it really do anything? ... at least with chemo you know it is killing cells ... good one's and bad one's ...

 

I should note it was my decision to try this Zytiga ... my oncologist presented what options I have left. I couldn't continue with the Taxol (chemotherapy) anymore because of the development of Taoxl related peripheral neuropathy (which does develop after long periods of chemo, CIPN)

Posted 10/24/2011 12:42 PM (GMT 0)
Hallo, I am very glad and happy I found this forum. I read most of the stories and I like to say that Henry you must be a very strong and brave man. It is amazing how much you have been through! I thought of the song "I am still standing". I am writing as I have my father with advance prostate cancer. He started with Abiraterone in August 2011. He is 66 and he was diagnosed 2006 with prostate cancer. He got a prostatectomy and then radiotherapy and started hormone therapy. A 1,5 year later he got metastasis on his bones and started chemotherapy with Taxotere and since August 2011 he started with Abiraterone. (see history below) In August 2011 before he started with Abiraterone his PSA was 18. In September his PSA went to 44. This week he will have his 3nd blood tests to check PSA. I am more writing to find out the side effects that you might experiencing. My dad is having muscle pain. He gets really tired and he has days when he has not pain at all and days when he just sits and takes a lot of painkillers to feel better. The doctor told us that usually after 3 months the side effects get less and he is realy counting now to the 3 month period hoping he will feel better. It has affected his apetite (due to the pain) that he lost 6kg within 1,5month. He had a bone biopsy and bone marrow biopsy in August and one also 3 weeks ago but the doctor told him by looking on the bone sample and bone marrow sample he got 3 weeks ago that it was much better than the previous one. I like to know if anyone else is experiencing muscle pain and if any of you had it in the beginning but not anymore. I tried to find more about it on the net and the only thing I see is that it is a common side effect but not sure if it stays for the rest of the time he will be treated with Abiraterone. Thank you all for your feedback in advance. I really appreciate it. I hope God keeps you all well. Eleni   §   June 2006-December 2006 Omnic (Tamulosin): 0,4mg Avercap: 11,5 (twice) §   December 2006 – SURGIVAL REMOVAL OF PROSTATE Surgical removal of prostate Right side 5,5% cancerous cells Left side 12,5% cancerous cells Right sperm bladder 65% cancerous cells In total 20% of the total examined area PSA after surgery 0,44 The PSA remained at the 0,44 since his operation. §   27 February 2007-16 April 2007 – RADIOTHERAPY TREATMENT Radiotherapy in total in 33 sessions §   September 2007-January 2008 HORMONE THERAPY Avercap: 11,5 every 3 months PSA values missing §   22 January 2008-November 2008 - HORMONE THERAPY Casodex 50mg Avercap: 11,5 every 3 months PSA values missing §   November 2008-February 2009 - HORMONE THERAPY Estrasyd 140 & Dexamethason: 1mg Avercap: 11,5 every 3 months PSA values missing §   February 2009-October 2009 - NO MEDICAL TREATMENT PSA Feb 2009: 15 PSA October 16 th 2009: 111,35 §   October 2009-13 May 2010 - CHEMOTHERAPY TREATMENT Taxotere 80mg every 2 weeks - Total 18 sessions Prezolon 5mg twice a day - October 2009 – April 2010 Every 4 weeks calcium infuse §   May 2010- May 2011 CHEMOTHERAPY TREATMENT WITH INBETWEEEN 3-5 MONTHS BREAKS §   August 2011 PSA 18 STARTED ABIRATERONE–UNTIL TODAY §   September PSA44
Posted 10/26/2011 8:54 AM (GMT 0)

I don't experience any noticeable symptoms from the Zytiga such as pain. Sometimes it is difficult to distinguish symptoms with metastasized prostate cancer. If it is in the bones, and effecting the pelvic area any symptoms such as pain may be because of the cancer, and not the treatments.

 

I have learned that even if diagnosed with the same disease, that is advanced prostate cancer, stage IV, and hormonal resistant ... each person is unique in how they progress. The most common symptoms seem to be the effects on the bones, and eventually the effects in the pelvic area, (the bladder, rectum, etc) as that area becomes constricted by the cancer mass.

 

The list of treatments do become limited as one progresses from one treatment type to another ... hormonal treatment seems to be a constant, and the first line of treatment (Lupron/Eligard) ... beyond that it usually is chemo, (Taxol), or some variation of chemo, and now Zytiga, and Provenge.

 

My experience has been that with stage IV the doctors will keep you on a hormonal treatment, and add other forms of treatment as you progress. All palliative in nature, but effective for awhile.

 

For me the main symptoms of pain, and inability to pee, (blood in the urine, etc) are results of the cancer itself.

 

The whole journey is a learning process. Before diagnosed in the year 2000 I didn't even know what a PSA was, or what an oncologist was. I have learned that each patient is unique in their journey. How they respond to treatments, and how the disease manifests itself.

Posted 1/19/2012 10:05 PM (GMT 0)

i have been on zytiga since 0ct.25.  i take prednisone with the drug.

had been on lupron/casadex from 1992 to mid 2011, when my psa started to rise from 15 to 200 in 5 months.  after using zytiga for 3 weeks my psa srise slowed down but still rose from l88 to 200. during the next 6 weeks the psa dropped from 200 to 168.  a positive result am hoping that zytiva and prednisose continues to work.

harold

Posted 2/13/2012 10:37 PM (GMT 0)
harold  new information.  after 3 months on zytiga my psa has dropped from 200 t0 139. hope it keeps dropping.                     harold                           
Posted 3/24/2012 6:37 PM (GMT 0)
Hope no one minds that I'm reviving this thread.

I would appreciate hearing updates from those who had posted.

Much thanks

Bud
Posted 3/25/2012 12:38 AM (GMT 0)
Hi: My husband started zytiga in September and was on for 2 weeks and than a psa showed his psa had gone down by 1/2 so after consulting with oncologist decided to go off of it for 1 month as weren't sure if results were from the chemo he had finished about amonth earlier. W

After waiting one month his psa went up again so went back on zytiga. Have been on it since than . His psa has dropped drastically is around 300, but has stabilized.

He is not having any noticeable side effects. He has some muscle pain off and on , but he thinks it's more arthritic than anything. He is on low dose, long release, hydromorphone and this seems to keep any pain he has under control.

He is doing fine otherwise and we are hoping his psa continues to hold.

One of his liver function tests have been elevated, but has stabilized, the oncologist is sure it is from having bone mets. and seems to think as long as the rest of his liver functions stay stable that it isn't something to be concerned about.

Hope this helps.
Posted 3/25/2012 1:06 AM (GMT 0)
kak

I should have mentioned in my post that I just started last week Zytiga 4 tabs once a day. A single tab is 250 mg.
Also two Prednisone. One in the morning and one in the evening.

I do have a number of questions for you,
His age?
What was your husbands PSA before the drop?
Is he also on HT at the same time? Such as Lupron or Eligard ?
How about Prednisone? Is he taking that?

Thank You!

Bud
Posted 3/25/2012 1:06 AM (GMT 0)
My husband was on Zytiga from May to December, 2011.  The PSA leveled off and even dropped a bit but lymph nodes in neck increased greatly by December.  He stopped the Zytiga/Cyclophosphamde combo in January and had the neck nodes radiated.  He begins Provenge this Tuesday.

He had a good response to Ketoconazole for two years.  His onco. feels that Zytiga is equal to but not necessarily greater than Keto.  We had been warned that previous Keto users might not have as good a response to Zytiga. 

He had extensive lymph involvement at diagnosis five years ago.  Has occasional aches and pains but remains busy and active.

Good luck to you.

Posted 3/25/2012 3:32 AM (GMT 0)
Hi Raddad: My husband is now 57 was diagnosed at age 52. Psa at diag. was 107, gleason 8.
He has had radiation (was good for about 2 years)
He had chemo.(taxotere) for 10 treatments. When his psa started up again he was accepted in a trail for zytiga.
Hi PSA was 449, started zytiga in 4 weeks went to 151, than in 4 weeks went up to 173 and than in 4 weeks went down to 169.
He has been on lupron every 4 months since he was diagnosed 5 years ago.
He is taking the prednisone twice a day , they won't let you take zytiga without it.
He has been really fortunate as he has not suffered a lot of side effects. Has had some hot flashes.

Hope this helps any more questions you have let me know.
Posted 6/12/2012 10:26 PM (GMT 0)
I have been on Zytiga for almost 6 months. Biggest side effect is hot flashes, night sweats are pretty bad.
PSA has been between 3.1 and 7.4. I was diagnosed in May 2011, stage iv, metastasized to the bone. Have gone through 2 chemo treatments and 3 weeks of radiation.

Feel very well, had to get pulled off chemo in Dec 2011 dut to lung infection. Started in Jan 2012 with zytiga and monthly lupron shot. Still working good, chemo not used, radiation not used since.
Posted 6/12/2012 10:59 PM (GMT 0)
Oh yeah hit flashes and night sweats! Got those!

Zytiga and prednisone twice a day.
Zometa monthly
Lupron (Eligard) every 3 months.

As my signature shows - PSA is down to 66.2 - hoping it will continue this trend.
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