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Zytiga has anybody tryed it

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

I'm a Vietnam Vet 1970 with Prostate remove in 2008, Gleason 9 (4+5). After Proton radiation in 08/2009 and by 04/2010 when to MD Anderson for for CT/bone scan and found PC in Lymph node's. Started lupron and Psa when back down to 0.5, but then started climbing again psa 1.5. By 04/2011 at started Bicalutamide and the PSA went back down PSA 0.7, but by 07/2011 back up PSA 1.0. They remove me from the drug 10/2011 PSA 1.2 and kept me on lupron. They waited until 12/2011 to see what the PSA would do and now it was PSA 1.9 Waiting on next drug, took until 01/15/2012 because insurance conpany. PSA 2.6 in 02/01/2012. Started Zytiga 1000 mg with prednisone 5mg. My side effect are OK, but time will tell!!

It is metastatic prostate cancer, I also have two stent in my heart, DiabetesII, and Peripheral Neuropathy thru-out body.

My Brother and sister's are older than me and all in good health! I'm better looking :-)

Where did I go wrong?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ralph,

Welcome to the forum and sorry about your numbers. As you are probably aware, Vietnam era veterans with boots on the ground in country or "brown water" sailors, or sailors who served on certain ships that regularly called on Vietnames ports have a proven link to Agent Orange. These men also tend to have more aggressive cancer as you do. The Agent Orange exposure has also been linked to increased cases of diabetes for Vietnam veterans compared to the general population.

Hopefully, the VA is paying for your treatment and has awarded you an increased disability number.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

The Doctors from MD Anderson have me on the lupron 4 month dose with Zytiga. I think MD Anderson are the best the nation and my Doctor is one the best! They told me last month or should I said to them. How much time do have and said 2 1/2 to 5 years. He said how fast it move into the bone's and if they can slow it down. That do think of MDV3000? VA is Compenstated me 100% totally and Permanently To think I will maybe only make to my 65th birthday. Got shot at and miss and shit at and hit. I know that there is 58 some thousands people that would like to in my shoe, that did not come home and I honor them as the true hero's! Sorry side track, do you know about this Zytiga?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ralph,

I have heard nothing but fantastic reports about MD Anderson and regularly correspond with a radiologist there. Of course you realize that your physican's mortality estimate is only that. Many men have lived much longer periods with advanced cancer. I don't know specifics about Zytigia other than I know that it works inside individual prostate cancer cells to inhibit the production of testosterone in advanced cancer. Zytigia is different from Lupron in that it addresses the cancer cells individually and not the testes. The side effects from Zytigia should be less than from Lupron.

Eventually prostate cancer becomes resistant to Lupron. As it advances the cancer actually becomes more primitive and eventually begins producing its own testosterone which it needs to survive. That's the point where Zytigia and similar drugs come into play. I think I recall reading that men taking Zytigia survived 33% longer than those men taking a placebo.

Eventually, all of these drugs become ineffective but hopefully they delay our mortality until something else gets us.

I'd encourage you to look at diet and nutrition as another tool in fighting prostate cancer, especially your intake of dairy and meat products.

During that war I spent my time off the coast on an aircraft carrier in Yankee Station...never made it ashore. In retrospect I'm thankful for that and I agree with you about who the true heros there were.

Best,

K

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

First, thank you for your service! If I had a dime everytime a doctor, I want you to go on this diet or you should eat this food. I call it the YO-YO effect. My Heart Doctor wants me on a Protien diet, My primary wants me try this, and my nutritist at MD Anderson keep it under 2000 cal's. But they all know if I eat 1000 cal's aday and on hormone drug it like eating 3000 cal's aday. Primary Doc said walking is my best defense :-) I Thing he right! + Diet and less dairy and meat. I'm like a rabbit eating green's

VascodaGama's picture
VascodaGama
Posts: 1916
Joined: Nov 2010

Ralph,

I read with interest your comments in the various threads in this forum and do understand your “high and low spirits” in your suggestions.
Treatments for PCa are not perfect and there is lots of guessing when a doctor recommends us something. Your experience in your survival is proving of that and all one can hope is that things work positively in our favour.

What one have chosen as a therapy is, without any doubt, the best, and we all tend to be biased to recommend the same to others.
Like you I have endured two failed treatments and now I am on my way to a continuing fight which I will never win. However, I know that I can be the “commandant” and so I can try to move things around when they become “too hot”. I only need to be ready and ahead of the things before they happen. I do it by educating myself in all matters that concern our sickness and try to be healthy to better sustain the side effects of the treatments. In fact the cancer has never bothered me.

Your treatment with Zytiga seems to be the best you can get for your present status. Your doctor’s suggestion with regards to the newer drug “on the block”, the MDV3100, is also something that have shown success on the trials (now advanced for FDA’s approval). These are drugs I hope one day to get to give me a grip on the cancer.
Kongo has explained well their action as intratumoral effect in the cancer cells. Lupron is lowering your body’s testosterone and hypogonadism may be causing you the typical “mood change” and “hot flashes”. You can check for this condition with a testosterone test. I would recommend you to get your lipids checked because the condition can cause problems with diabetes and Zytiga may cause liver damage.

I am still on the beginning (14 months) of the hormonal treatment with Eligard (leuprolide acetate). This drug has caused a decrease in the PSA (from 1.0 to 0.02) and several side effects which I have countered with a change on my diet and life style. I try to be fit and healthy so that my body will accept better any "difficult-to-control" drug in the future (such as Prednisone).

I would recommend you to get checked for any bone metastases with the newer Na 18F PET bone scan. This can provide more accurate readings which could lead to focal radiation on any spot. MRI with C11 contrast (radioactive agent) and 3Tesla field can check for any metastases in local tissue providing you with added possibilities to “kill” cancer localized. Here is a link;
http://www.molecularimaging.com.sg/c11_acetate.asp

You can inquire on the above with your doctor. Another drug that may be of help in your future treatment is Alpharadin from Bayer that is awaiting approval by FDA. This drug attacks PCa in bone successfully. Here is an article on the wonder drug;
http://www.medicalnewstoday.com/articles/234945.php

I believe that all of us in this boat got the same question without a proper answer;
Where did I go wrong?

The best to you.

VGama

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

Vascodagama
Yes, you hit it on the head. My condition's is one day in the gutter and the next day on top of the world. If I was just fighting cancer, I would be a happy camper, but the other condition's cause more problem with the drug's I take for the cancer. Along with the Peripheral neuropathy and bowel dysfunction and diabetes II and it goes on, But the good thing is that I'm taking walk's again" everyday :)))! My mind sometime fade in-out with the lyrica. Oh yes with the Zytiga you have to take the Prednisone

The best for you TOO

Ralph

pquinn
Posts: 1
Joined: Nov 2015

I am new to this site . My husband has stage 4 since 20ll. Had prostatectomy but unfortunately had already had mets to bone . On lupron since then with good result until 2 weeks ago sent to oncologist as psa rise to 3 . Repeat psa 7. He reassured us there are many things to try . He was alitte rushed as he fit us in. He called on the phone and wants to repeat scans as none have been done in 4 years . He names mutiple drugs a casodrex, firmagon and newer ones as zytiga .  We made another appontment for next week as we were confused as to his plan . How would firmagon help as his t level is low now. Also would casadex help ? He  also received  xgeva from the start , feels fine , no pain , rectal was normal. Your posts are very infomative and helpful. 

Thanks

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1784
Joined: May 2012

PQUINN,

A friend was on Zytiga two years ago. He was not a very cooperative patient, but it did knock his PSA down nicely (it was around 600 when he started, if I remember correctly).  I do not remember the side-effects being much more than weak appetite and fatigue.  He later went on Jevtana, which also was helpful, but the Jevtana caused him severe looseness in the bowels, which is a common side-effect of that drug. I believe that part of his bowel issues derived from the fact that radiation had badly damaged his colon years earlier, so not everyone is likely to have that problem to the degree he did.

Jevtana and Zytiga were both initially FDA approved as follow-on drugs to fight metastatic disease after Taxotere (the usual prostate chemo drug; also known as docetaxel) had failed; Taxotere is not regarded as 'curative' for metastatic PCa.  They are now used at other stages of treatment by many docotrs, so your sequencing throught these drugs may or may not follow Taxotere, if your husband does receive it.

The prognosis for life extension on Jevtana-Zytiga varies significanly, and the early reports were based on very small population samples.  It is quite possible that they will assist your husband for a long time, however, and I hope they do so.

Please note: from what you wrote, it is quite possible your husband is not to the point that these  'chemo and post-chemo' drugs are required. I am not very well-read in end-stage treatments (I just asked a lot of tretment questions from my firend's NP when taking him to the doctor, and then researced each drug a little).  Chemo, for advanced metastatic disease, is ordinarily regarded as the "last hurrah" in treatments, so save it for the final battel, when ever that time arrives.

max

http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx

http://chemocare.com/chemotherapy/drug-info/zytiga.aspx

http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

asmith0612
Posts: 1
Joined: Nov 2015

At age 45, i was diagnosed with prostate cancer in both side of my prostate, but not yet in the lymp nodes and bone. It took a minute for my ego to chose life but I did, and a radical prostectomy was performed. My life had just changed forever. After things healed up we immediately did 6 weeks of focused beam radiation. Now PSA is (Undetectable). Recovery went well, except for the incontinence the drove me almost insane. To be standing talking and feel yourself leak uncontrolled, was nerve racking. So a one year later, I told my Doctor, then from St. Lukes, but fantastic. That I could not continue leakking uncontrolled like this. So his solution was an Artificial Urinary Sphinter, that has been working great to this day. It is a small cuff placed around the urethra at the bladder neck and operated by a small device in one testical. it is barely noticibale, but does a fantastic job.  My company drop insurance that my Urologist used, and I moved  to MDAderson where I heard were the best. Because after 15 years of (undetectable) I had a reoccurence in 2011. By 2014 I was 2.1 and it was suggested to start Lupron and Zytiga. I said no, I went to Cancer Treatment Centers of America, but they came up with the same diagnosis and treatment. So I went back to MDAnders now at 2.9 and started treatment 2 months ago. at the end of  (first month) of the Lupron injection, 4 250mg tabs of Zytiga a day, and 1 tab of prednisone, I was back to (undetectable). So far the side effects have not been that radical, just a little tired at times, which can be compensated for. This is a trial (Zytiga / Prednisone) FYI I am now 59.

ssyyp6
Posts: 4
Joined: Jan 2012

hi, my friend is going through very tough time right now due to his high PSA, it seems the chemo treatment doesn't work on him, because his PSA is still going up, and doctor said he might be out of option, i am so worry about him, trying to find the best and specialist doctor for him to try again, you are talking about MD Anderson, how to find him, is he very good? thank you for you great help!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

ssyyp,

So sorry about your friend. Although the details you shared are pretty sketchy, high and rising PSA after chemotherapy is not a good sign as I'm sure you and your friend realize. Typically, chemotherapy is the last option for advanced prostate cancer.

I hope he seeks other opinions but MD Anderson has a great reputation as a world class cancer center and I am sure his medical team is doing everything possible. Sometimes, despite the best efforts of science and the medical community, these aggressive cancers win out in the long term.

Can you share more details about your friend and his medical history in reaching this stage?

Hoping for the best.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

One thing I for sure like about MD Anderson is the way they attack this Prostate Cancer. Mine is stage at M1a. They have never talk about Chemo treatment with me. But like this Zytiga drug you had to have Chemo first before you could take it. Md Anderson got FDA to allow aproval use od Zytiga before. I have been on the drug for one month and my PSA is down to .3. MD Anderson Dr. are excited and me too. They said this new test is show great result and that it could keep my cancer in check for up 1 to 2 years. Or it work for only 3-to 5 month. They have to watch my liver every month. IT LOOKS GOOD

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Ralph,

That's great news. There are some potentially significant side effects with Zytigia as your medical team may have explained to you, but your results so far are fantastic.

Here's a handy reference on potential side effect I think you should bookmark.

http://www.drugs.com/sfx/zytiga-side-effects.html

K

dcpowders
Posts: 2
Joined: Apr 2012

Glad for you, do you know of any foundation or help in paying for Zytiga, we have the Part D drug coverage but even with that it will be 4700 out of pocket per year, and then at least 250 per month, that can wipe a savings out really fast, please help if you can, thanks

mrspjd
Posts: 694
Joined: Apr 2010

dc,

Welcome here. Have you tried the Zytiga site or through Zytiga's pharma manufacturer, Johnson & Johnson?
http://www.zytigahcp.com/zytigaone-support-for-patients
http://www.zytiga.com/support_and_resources/zytiga_coverage.php

You might also try doing an internet search (with google, etc) using the words "zytiga financial assistance." Hope these suggestions prove helpful. Good luck.

dcpowders
Posts: 2
Joined: Apr 2012

I will certainly give it a try, thanks so much

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1784
Joined: May 2012

A buddy (71 years old) has been Stage IV with prostate cancer for some time. His prostate was cut out about 12 years ago, and treatments of every kind (radiation, hormonal, chemo)have been off and on pretty much since.

His PSA was an incredible 260.00 (this is NOT a typo; his PSA always runs over 200.00) when he started Zytiga about three months ago. At his most recent check, the PSA was down to around 40, a very dramatic drop, of course. He feels great (always has), and the drug has had no side effects so far. He is taking four pills a day at home.

max

lookin4aMiracle
Posts: 2
Joined: Jul 2012

Inquiring on behalf of my father... Anyone seen PSA's rise a bit after being on Zytiga for about 6 weeks? I hear this can happen, but wondering if there are any cases/examples someone can give. Looking for anyone who has had an initial dip, then temporary rise, then decreasing PSAs from there.

thanks!

lookin4aMiracle
Posts: 2
Joined: Jul 2012

Inquiring on behalf of my father... Anyone seen PSA's rise a bit after being on Zytiga for about 6 weeks? I hear this can happen, but wondering if there are any cases/examples someone can give. Looking for anyone who has had an initial dip, then temporary rise, then decreasing PSAs from there.

thanks!

VascodaGama's picture
VascodaGama
Posts: 1916
Joined: Nov 2010

Miracle

Zytiga is an inhibitor of the enzyme 17 α-hydroxylase/C17,20 lyase that is required for testosterone production. This is a drug capable of intratumoral activity, stopping the production of testosterone within the cancer cells (their androgen factory) along with the production at the testes and adrenal glands, inducing the cancer to die from “starvation”.
An increase of the PSA due to active cancer would mean that your dad is experiencing hormone treatment failure. Chemotherapy and immunotherapy would be his next choices to control any advance of cancer.

Nevertheless, a small rise could be due to a variety of other factors. Bad administration or bad metabolism/absorption of the drug may cause it not to function properly in stopping the production of androgens. The drug is recommended to be taken together with prednisone to avoid liver problems (causing hypokalemia), and it should be taken on an empty stomach for proper metabolism but low levels of acidity may cause the drug to be badly absorbed. Taking other medications may also cause interaction with a result of bad absorption of Zytiga. Doctors may prescribe higher doses in such cases or adopt other means to control acidity.

I recommend you to discuss with his doctor or an oncologist specialist in targeted medication, before drawing any conclusion.
Constant vigilance of lips is important (liver health, etc).
I wonder what are the levels of PSA you are describbing. Can you share info on his case, status, age and reason for taking Zytiga?

Wishing you find peace of mind.

VGama

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

Miracle, I have been on Zytiga since 02/2012 and the psa from my test has been at 0.3 down to 0.2 and holding. As VGama said that need to be careful in when he takes the Zytiga VS predinisone. My Doctor from MD Anderson said eat some food in morning and take the Prednisone after you eat and start a 2 hour alarm clock and when the time is up take the 4 Zytiga pills and start a time 1 hour before eating. Never miss your Prednisone!!!

With all the medicine I'm on, I forget to follow my schedule. So I make sure of my alarm clock.

Good luck, would also like to know his status psa, gleason scores, age

God bless :-)

Samsungtech1
Posts: 351
Joined: Jan 2011

Ralph,

Really good news. I am really happy for you. Wish you continued success. Keep it up.

Happy Fourth, I hope you enjoy your day.

Mike

VascodaGama's picture
VascodaGama
Posts: 1916
Joined: Nov 2010

Ralph

I recall you telling us about other pills you are taking. Could you explain about your daily time-schedule to take them including any meal?

Your above comment is important for all of us (the ones on the drug and to the ones like me that will surely follow your suit), and I am aware of the interaction/reaction between drugs which may be toxic if not properly administered.

Appreciated.

VG

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

VGama, Thank you for all your support to all!!

Medicine

Lupron every 4 months
Carvedilol twice daily 12.5 mg
Quinapril 20 mg once in the morning
Glyburide 1.5 mg once in the morning
Lyrica twice daily 300 mg
asprin 81 mg daily
Vitamin D 2000iu daily
Simvastatin 40 mg in the evening

The first month on Zytiga I started the morning with Zytiya 4-250mg first and then wait for a hour to eat and take my morning medicine with the prednisone .5mg. Had some side effect of disconfort. Some of the thing listed by J&J.

Then I went back to Back MD Anderson after 1 month and told the doctor of my condition. They told me to eat first and with my medicine and the prednisone. Then waiting the 2 hours and take the Zytiga. The side effects seemed to have decrease. Now waiting for a hour or more to eat anything else.

I found that increase of water through out the day seem to help with the side effects. Also time between food and medicine also seem help decrease side effect. Instead of 2 hours, I would go 2 1/2 hours and instead of 1 hour, i would go 1 hour 15 minute. I would drink enough water to get zytiga down, trying not to drink any other liquids with Zytiga. Orange juice, coke ETC.

Some of the side effects are due to the Lupron, so it sometimes hard to understand which drug is the effect. But my opinion of Zytiga is that it will probally give me maybe 18 months quality life.

VGama and everybody good luck with your direction in life.

God bless

VascodaGama's picture
VascodaGama
Posts: 1916
Joined: Nov 2010

Thanks for the details.
Zytiga may be close to be the Silver- Bullet to kill cancer but it needs stealth technology when being shot. Precision administration is required and tried differently in each patient. Some guys do not as well as you are doing.
I hope that your 18 months become 18 years.

Thanks again.
VG

nforshee25
Posts: 1
Joined: Feb 2013

Hi Max,

 

I am wondering how the Zytiga ended up for your friend.  I am in the same situation with my father - he was just taken off chemo due to being non-responsive (this was his second round of chemo) - he was on Lupron (hormone treatment) prior to this.  His PSA levels have also been over 100 several times after coming off from chemo or hormone treatment.  How long did the Zytiga work for your friend?  Any info you can provide would be appreciated!

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

It's like anything we do, we should injoy life! Zytiga is a good cancer drug that was approved by ME for 13 months and MD Anderson cancer center!!! There was no chemo required and did the job.

 

God bless and good luck! Ralph

grey ghost
Posts: 33
Joined: Jan 2012

Hi Ralph,

Hope that your Zytiga is continuing to work well for you. I have been on it for 5 months with good success, but found your comments on timing most helpful. 

grey ghost
Posts: 33
Joined: Jan 2012

Hi Ralph,

I take my Zytiga at around 5 am (when I have to go to the John) so I have been fasting for at least six hours. Then, after breakfast around 8 am I take the Prednisone and my daily meds. I find this regimen easy to follow with no apparent side effects.

How are you fairing?

Jim

jashmore3
Posts: 1
Joined: Jul 2015

I started zytiga 12 months ago, psa was 41.6. It dropped to 11 after first month then 9 second month until it reached 4.6 after10 months. it since has climbed to 6.0 next month 9.6 and now it is

9.5 this month. i have had and am still on the luperin. hot flashes are the only real side effect. Should be starting ENZALUTAMIDE this week, has anybody experienced this?

VascodaGama's picture
VascodaGama
Posts: 1916
Joined: Nov 2010

PQUINN

You may want to start a newer thread to discuss and share details about your husband PCa story.

A note on your above questions (http://csn.cancer.org/node/236006#comment-1520990), on Firmagon, Casodex and Zytiga, recommended by his oncologist, I would consider trying all of them at (its own timing) because they may have a meaning in the treatment of your husband’s present status, if his cancer is still hormone dependent.

Yours and your doctor’s decisions should be taken from a testosterone test. All three drugs will try to subdue the cancer by starving it, avoiding it from absorbing androgens.

Firmagon works similarly to Lupron in reducing circulating testosterone (cancer food) in the body but its achievement is done differently from the way of Lupron. Lupron is an LHRH agonist and Firmagon is an antagonist. Lupron floods the pituitary LSH signal system and Firmagon obstructs the LSH signal receptors at the pituitary. When one is not functioning well it can be substituted by the other.
These drugs good action can be verify from a simple testosterone test. If your husband is in clinical castrate levels (T=< 50 ng/dL) it means that the drugs are OK but the cancer has become hormone refractory.

Casodex works at the cell’s androgen receptors flooding it so that these cells cannot absorb the real stuff (testosterone). Patients taking Lupron would expect lesser testosterone in circulation but the agonist is feasible to avoid manufacturing of T at the testes. Androgens produced in the adrenal glands (10% of the circulating androgens) are not affected and will be circulating and feeding the cancer.

Zytiga is a newer drug that will go further the line trying to avoid the manufacturing of testosterone in the whole body, by suppressing an enzyme (CYP17) required in the production of androgens. Please read my above post. The drug has its risks because it may interfere in the production of substances required for other body functions so that it is administered with prednisone, an immunosuppressant drug good in inflammatory situations caused when certain body substances are lacking.

In any case, hormone refractory patients may not benefit as much from hormone treatments so that doctors move up in the sequential recommending treatment with chemotherapy. Max above provide you with good information on that matter.

Best wishes,

VGama

Swingshiftworker
Posts: 818
Joined: Mar 2010

It's easy for me to say because I don't have to deal w/the problem yet but, if I ever have to make the decision, I think that I'd still prefer to just cut off my balls and deal w/the side effects of that rather than have to deal the confusing array of ADT drugs -- Lupron, Firmagon, Casodex, Zytiga, whatever -- and their various (sometimes extremely debilitating) side effects.

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