Dan596 years ago

I was diagnosed in June of 2006 with gleason 10 and widespread metastatic disease to bone and Lmph nodes in distant sites, and given a year to live at age 49. I did casodex with zolodex, and avodart , I started nilandron as high dose casodex raised my liver numbers, after 2 or 3 years with rising psa I started high dose ketoconazole and got another 2 years or a little more with that and zolodex, then I did zytiga and got more time , I had almost no side effects from zytiga, then combined it with xtandi for more time, when that was clearly failing I began chemo after 10.5 year, I am getting a good response by scans .

I have heard of Dr. Smith, I believe he was principle investigator in xl184 trial a few years back. I also have a lot of faith in Mass General, My wife had breast cancer surgery there and it is very highly rated Hospital, also I it is where Ted Kennedy was treated.

2 years is a median statistic, as are most numbers we get so it is important to know that there is 50% chance you will do better . Must read essay by Stephen Jay Gould, "The median is not the message , a true message of hope for Cancer Patients phoenix5.org/articles/Gould...

I wish you the best, we are all here for you,

Dan

grahaminator63 in reply to Dan596 years ago

Thanks Dan. You inspire me to have hope when the last year has been so bleak. Keep fighting.

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podsart in reply to Dan596 years ago

Dan59, you reference ketaconazole, only the 2nd time i have seen it referenced in Pca. The other in one of Dr Liebowitz 's treatment modalities, when I a do lookup on this med it's listed as a anti-fungal, do you know or were told how this drug has been found to be useful in Pca?

Much luck to you

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Dan59 in reply to podsart6 years ago

Ketoconazole was used extensively in Prostate Cancer before the FDA approved zytiga about 6 or 7 years ago, many of us had good responses, it is an antifungal that inhibits testosterone although I can not remember at the moment the way it does. It is about 1/20 of the price of zytiga. here is a quick search of ketoconazole in Prostate cancer in google scholar. scholar.google.com/scholar?...

with 15,400 hits

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podsart in reply to Dan596 years ago

Thanks

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BigRich6 years ago

I was given 5 years, and that was 18 years ago. Continue to have good doctors and read all you can about the disease. Be part of your medical team. You can't be a medical doctor; however, you can be an informed medical consumer.

Rich

motosue in reply to BigRich6 years ago

What was your Gleason score, PSA then and now. Did you ever reach undetectable?

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BigRich in reply to motosue6 years ago

Gleason score 7, The highest psa was 105 and I don't believe I was ever undetectable, for they didn't use ultra sensitive PSA tests back then..

Rich

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zengirl in reply to BigRich4 years ago

How are you doing, BigRich?

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Nicnatno6 years ago

I was diagnosed on March 3, 2017 with metastatic PCa that spread to the nearby bones. My PSA was 415 and Gleason score of 8. After 1 shot of Lupron and 2 rounds of chemo, my PSA is now down to 0.8. My Onc

motosue6 years ago

I'e been taking Lupron and Zytga and Xtandi together for about 4 - 5 years. I have ED but I don't know from which medication. Good luck.

Nicnatno6 years ago

My Onc said he will not set a timeline on future meds because everyone reacts differently, meaning it's all genetics. He told me to stop reading Dr. Google, period. When I told him that I wanted to retire in 4 years, he said why, I had many more years to live past that. I felt so elated of course. My advice to you is not to think ahead to future meds as you may get plenty of years with just the lupron. I live day to day and cherish every moment of it with my wife and 3 boys. Ive learned to embrace the "c" word and not think about it. I just go about my business on a daily basis. The great men and women in this group have also helped me and contributed why I've embraced the c word. I am 52 and receive my treatment at the M.D. Anderson Cooper Hospital in Camden, NJ.

Nick

George796 years ago

I've been on Zytiga for 9 months and am still on Lupron after 3 years PSA was doubling monthly before Zytiga. Was knocked back to where it was before I started the drug almost immediately. Now beginning a slow rise again. Seeing oncologist today to learn if positive effects are wearing off, As for side effects, some mild fatigue but nothing else.

Hidden in reply to George796 years ago

I'm in the same predicament, George. Seven+ years of Lupron, and Zytiga for about eight months. Over my past recent history, my PSA has risen by .2 a month, until last month it rose by .4. Right now, I'm at 2.3. My Onc doesn't want to do anything until it doubles. What does yours say? I'm really curious as to what he has to say.

Joe

PS I'm also taking BIRM, which helps for the fatigue and brain fog.

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George79 in reply to Hidden6 years ago

Got good news today. PSA dropped from 4.2 to 2.9. Lowest it has been in years. Had a shot of xgeva to ward off osteoporosis. I'm also taking monthly xofiga shots hopefully to eliminate the bone mets. We have a big travel schedule coming up and my oncologist is confident nothing will stand in the way

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Hidden in reply to George796 years ago

Very cool! But now I'm back in a confused area here.

I'm on Xgeva for bone health, a shot every 28 days. My Onc said no to Xofigo due too no painful mets. Do you have pain?

Joe

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eggraj86 years ago

Life with metastatic cancer is one day at a time. The Lupron will work until it doesn't work and then the doctor will try something else. The one thing I have found is that many of us with metastatic CRPC behave differently. I have just finished eight cycles of chemo and my cancer is stabilized but I do not think it will last forever. My oncologist will then try another drug or procedure based on my vitals and then hopefully i will get another couple of years.

RonL6 years ago

I was originally diagnosed at age 64 in April 2013, PSA 67, Gleason 9 (4+5). Had radiation and went on Eligard (Lupron). With good PSA results I went off Eligard after two years. I was good for a year then my PSA started to climb and I went back on Eligard. 7 months later my PSA climbed again so I was now in the castrate resistant stage (CRPCa). A bone scan revealed metastasis in several locations. I've now been on Zytiga/Prednizone plus Eligard for two months and my PSA is down to 0.3. I'm also on Xgeva to help prevent skeletal events. I can say I've had virtually no side affects from the Zytiga and so far have been asymptomatic as far as the disease goes. Secondary hormone treatments eventually fail and the length of their effectiveness varies. I know one individual who has been on Zytiga for 8 years, another for four years and in some cases its effective life is much shorter, it's a crap shoot. Nonetheless there are other treatments that can extend your life after Secondary hormone therapies fail. Good luck.

Ron

TommyTV6 years ago

Hi

I was diagnosed 5.5 years ago, PSA >600, Gleason 7. Multiple bone mets, skull, shoulder, two ribs, large pelvis met, both femurs. After 4 weeks of Bicolutamide and started on Zoladex, PSA at <0.1, which was astonishing. Joined the Stampede trial immediately on arm G, Abiraterone and Prednisolone along side the Zoladex. PSA has remained at <0.1 throughout.

I'm checked every 4 weeks for liver function etc. My main problem is that of muscle wastage, particularly in my thighs, which were in a bad way anyway from the PCa. Major hormonal changes and the steroid have changed my skin and hair for the better, not as greasy, and a slight effect on my throat mucus, which has thickened. I'm pretty sure the steroid is the main culprit.

What a small price to pay! I've had 5.5 great years so far, and many more to come. I might just get shot by a jealous husband at 82 yet.

Now the really good news.. I spoke with my Oncologist last week for the first time in 5 years, and we discussed the long term effects of Abiraterone, as previously it had been used as an end of life treatment for 15 months on average. He told me the results of Stampede trial G are due in the next two weeks. Although he couldn't say what they were, he just told me that 'You bought a lottery ticket and won'. Sounds really encouraging.

Neal-Snyder6 years ago

I was diagnosed over 14 years ago. PSA 60.7. Gleason 3 + 4. RRP only brought me down to 0.2, & EBRP only briefly to 0.1. They weren't using chemo on early-stage guys back then.

When Lupron failed & bicalutamide (Casodex) was added, I briefly hit 0.1. I was told that I'd be on Lupron for the rest of my life, so they must think it supports other treatments(?). If anyone knows the answer to this, please speak up. Graham, the time that any medication will work for you is highly variable. I was also told I'd never hit 0.1 again.

A few oncologists told me that I wouldn't survive for long. They were wrong. Of course it's been very helpful that new treatments have come along.

I just finished almost 3 years on Zytiga. It reduced my PSA from 160 to 13. I always said that the only side effect was easy bruising, from prednisone. But reading what other guys have written here, I realize that I have experienced some fatigue & fog-brain. (I had a bunch of tests about the fog-brain & nothing was found. I never felt that the fog-brain interfered with mental functioning, just that I would rather feel clear-headed.)

I was encouraged by a nurse practitioner to retire to reduce my stress hormones & have more time for fun so I could increase my pleasure hormones to fight the PCa better. Since I didn't necessarily have much time left, she also urged me to have some retirement time while I was feeling healthy. I did retire 11.5 years ago. It's allowed me to sleep late, have extended visits to Asia with my wife, go out to see live music, go to grandsons' Little League games, etc. I really believe it extended my life. But if I were 54 like you (I was 64), & not being told I might die soon from PCa, that would alter the equation. If there's anything you can do to reduce stress without retiring, such as reduced hours or a different assignment, you might want to consider it. Late in my career, I switched from prosecuting child abuse cases to supervising other child abuse prosecutors, & that was very helpful.

Best of luck to you, Graham.

Neal

BigRich6 years ago

Clintmeek

" Having a well researched plan of action at each stage of your disease is important." That is so true.

Rich

Troutwerks6 years ago

I have been taking Zytiga since early December 2016. My PSA dropped from 38 to 5 very quickly and I found that I felt much better physically. My PSA plateaued at around 5-6 until 3 weeks ago when it rose to 11.9. Where we go from here is to be discussed on the 24th of May. We have discussed adding chemo to my treatments as I haven't had any chemo at this point.

I have tolerated Zytiga very well (except for the prednisone which has caused me to gain a lot of weight). Zytiga can work very well but in my case the positive PSA results have been short-lived.

I was diagnosed in July 2015 and have undergone a radical prostatectomy and radiation as well as Zoladex every three months. As of last November we switched that to Eligard every 6 months.

Good luck and I look forward to following your results.

cm19416 years ago

I don't know what you read that said hormone therapy quit working after 2 years but it is wrong and misleading. How long it will last is dependent on the nature and aggressiveness of your PCa. It may not work at all or keep working for over 5 years. It has worked for me since 2011. Lupron, Casodex, Avodart. Casodex quit after 2 years, so I switched to Nilutamide which is still working. Start going to Us Too meetings, if possible. A great reference site is:

theprostateadvocate.com/obs...

Good Luck, Clint

ontheroad5896 years ago

Diagnosed 4/2016, age 57. PSA total 658, Gleason 9's and 10's, all 12 cores. Initial scans showed Mets to distant lymph nodes, skeleton (everywhere, from toes to cranium). Casodex immediately brought PSA to 110 by May. Lupron Zometa in May 2016, every 13 weeks and stopped Casodex same month... and again next Monday. Docetaxel 6 rounds, 7-18 to 10-31-16...PSA got to nadir of 1.59, was doubled by 12-19-2016 (3.57). Doubled again by January (7.65) , tripled to February (23.0), put back on Casodex, PSA stayed at 23 for March, then doubled in April (46) so stopped Casodex and doubled again to 96 in May 2017, then hit 220 so we started Zytiga June 30. PSA dropped to 165 in first two weeks, then 150 next two weeks, then back up to 225 9/5. Have MO appt next Monday 10/3, so we shall see where we are and what the MO wants to do, but I feel pretty good most of the time and think PSA had either dropped or held steady this month, in which case he will stick to Zytiga...guessing Xtandi is next...

snoraste in reply to ontheroad5895 years ago

have you done any genetic testing?

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ontheroad589 in reply to snoraste5 years ago

no

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snoraste in reply to ontheroad5895 years ago

I strongly urge you to do it if you can. I discovered I have BRCA2 mutation. That was the bad news. The good news is that there are several drugs that specifically target that mutation, and seem to work very well for patients with BRCA2. That's just one example.

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phelie5 years ago

My husband started Zytiga 6 weeks ago and has had increased pain. He changed from Tylenol with codeine to low dose morphine twice a day. Still has pain. Was told his case is "unique" because he developed lesions in the skull base within 14 months of diagnosis and had 14 radiation treatments to the skull. Not sure what the next steps will be. It's terrible to see him in such pain as you all well know.

grahaminator63 in reply to phelie5 years ago

Thanks for sharing. Keep on fighting.

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scarlino4 years ago

I did zytiga as part of a clinical trial. I tolerated it very well, with limited side affects. I went about 18 months before it started to fail.

Be blessed!

Originalsnds3 years ago

I am currently on Zytiga with Elligard (proving to be better than lupron however the same type drug) been on it for 3 months now. A clinical trial.. No side effects so far.. has really taken the PSA down to .16 in a couple weeks. PSA was getting out of control with just the lupron after a year and 1/2. All been going pretty well so far. Been fighting the cancer almost 4cyears. Started with 45vtreatments of radiation and monthly treatments of Firmagon. The firmagon did greatvfor 18 months. Last 6 months PSA started rising fast. Switched to Elligard for 1 &1/2 years. PSA again on the move doubling every month. When it hit 10 went on the Clinical trial wit Zytiga and all went well so far. Taking 4 pills ecery morning 250 m each. 1000 m total. Not even a little side effect. Hoping thisvtrial paves the way for everyone

Originalsnds3 years ago

Forgot to mention that i also have multiple bone mets in left hip. Ribs and several places in my spinal column. Everything is going fine so far. No furtger progression last couple months.

Originalsnds2 months ago

Good morning, I have been in the battle since December 2015, started with radiation treatments 45 days. and then Firmagon injections every 28 days. After about 18 months the firmagon was failing. I decided to get a second opinion at a Cancer Center.. Fox Chase in Phila. After an intense review and testing they recommended Lupron injections every 3 months. Several months later added Zytiga 1000 mg every morning, and prednisone 5 mg every morning. This was due to metastatic prostate cancer spreading several places. Ribs , left hip illiac which I did do additional 12 days of more radiation. Has spread to my spinal column and did much damage to my lower spine that I could not even get a fusion done. Very hard to walk and bend. Troublesome

Had an electronic morphine pump implanted in my abdomin and tubes and catheter placed in and along my spinal cord near half way up my back. This automatically doses me 24 /7 to control pain. Refill every 3 months with needle going thru abdominal to get into the tank to refill. Works unbelievable. been very lucky

I had very little side effects but I got to say what a difference. Zytiga really worked well for me.It's now 5 years later and still on the Zytiga program with Lupron injections. My PSA which was original 28. Is holding around 3.74. I am a Gleason 9. Very Aggressive Cancer

Going on 8 years now in the battle. I still see my Oncologist every 28 days from the beginning. Lots of Blood tests. Monitoring etc. Also go through many scans and nuclear bone scans as well every 3 months.

Cancer is different for everyone. Treatments are many. In the beginning I was a mess I've in mind etc.

I'm more relaxed now and trust my Medical Team at Fox Chase Cancer Center.

I know I cannot be cured, however it can be maintained and that's a big one for all of us...

Hope this gives you a better picture on patients taking Different med programs.

ZYTIGA and Prednisone is pretty much the Cancer go to drug these days.

It is working.. wish you well in your choices in this battle. Barry