Lupron only or lupron plus zytiga and... - Advanced Prostate...

Advanced Prostate Cancer

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Lupron only or lupron plus zytiga and Prednisone?

GeorgeGlass profile image
63 Replies

I have metastatic prostate cancer. I did lupron for year, got psa to .09. Took lupron holiday. Psa snow rising (currently 7.5) Testosterone over 900. I got my most recent three-month shot, eight months ago. My psa has been up to 38 before I started Lipton in late August 2016.

One doctor recommending adding zytiga and Prednisone another doc saying how much of a commitment it is to do that. I have coronary artery disease from family genetics. My diet is very healthy, I'm strong, athletic and 52 years old. I get slightly depressed on the lupron.

Are there any studies that show that the combined treatment will give me a longer life than Lipton alone? How much longer? I think a test showed 13 months increased life for non metastatic cancers, so what about metastatic category? Is there combined treatment so much more harsh and travel restrictive, and harder on coronary arteries than just lupron? I'm trying to figure out if the quality of life is much lower with the zytiga than without it and do a cost benefit analysis. Example - live one year longer but the 5-8 years it whatever I have might be a lot lower quality of life if on the zytiga.

I am hoping to live long enough that I can hopefully receive the next big breakthrough treatments from stem cell research.. maybe approximately 7-13 years from now.

Lastly, how do you take zytiga and Prednisone? Sounds like they are pills and not a shot like the lupron is.

Thanks in advance!!

Blessings,

George

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Dr_WHO profile image
Dr_WHO

Yes the buzz is that Zytiga with Lupron offers significant advantages vs just Lupron. They added Zytiga (and prednisone) last summer to the Lupron I have been on. So far the only side effects are those associated with Lupron.

Here are some references

ascopost.com/News/55699

ascopost.com/News/55700

cancernetwork.com/asco-pros...

The two major negatives are first the fact that you have to take it on an empty stomach. I end up taking mine in the middle of the night. The other is cost. If not covered by insurance it cost ~$300/day.

Wishing you the best. Please remember, people like us we have to stick together!

GeorgeGlass profile image
GeorgeGlass in reply toDr_WHO

Thanks Dr who. Very good information!!!

pinejog profile image
pinejog in reply toDr_WHO

Me

Hello everyone I am new to your forum and could use a little help I had my prostate removed in 2011 with radaiation shortly afterwards. I have been on Xtandi and Lupron for a little over over a year Before starting Xtandi my PSA was at 196 Since I began Xtandi and lupron my PSA has moved from 40 to 69 where it is currently. My T level is 21.

My MO is leaving it up to me if or when to move to Cemo.I have a break in my employment and need advice if this might be a good time to give cemo a shot.

All this is made even more complicated with the reality I fell great.

Thanks

Dan59 profile image
Dan59 in reply topinejog

Pinejog, I would suggest you make a post to the group, as most people will not see this reply to a 2 month old post, best wishes, include all the known facts you can remember or find, and dates. I will just say that for me chemo was not that bad, and be sure to check on ways to mitigate the side effects of chemo, if you should decide to go that route.

Dan

Polly092750 profile image
Polly092750 in reply toDr_WHO

My husbands Dr told him to take the zytiga and prenissone with food he said Its 10 time better.

GeorgeGlass profile image
GeorgeGlass

I'll ask the doctor about the vantage gel insert. Surprised I never heard of it before now.

GeorgeGlass profile image
GeorgeGlass

Wow, interesting. Will insurance cover it? Any big dangers like the norplant in women's arms?

Your treatment is the "right" treatment if you are happy, just move on and enjoy life.

Yet, as one metastatic prostate cancer survivor to another, I have to ask, do you fear chemotherapy? And, you are seeing a Medical Oncologist that specializes in metastatic prostate cancer, right?

In my opinion, and I am not a physician, those with strong bodies while the tumor burden is minimal, have the best results with a possibility of cure, than those who do not or wait until the cancer fully engulfs and weakens the body.

In the last fifteen years, tremendous headway has been made on thus bastard of a disease. Arsenals of "magic bullets" are created every year to extend life; and it is nice to have those available. As my research Medical Oncologist told me when I started my journey, "we found out how to kill cancer in 1978. The only problem was how to kill the cancer without killing the patient. I believe that I am there." Thus far his hypotheses have born fruit?

Today the only medication associated with prostate cancer I take is 4 mg of Androgel twice a week to bring back testosterone. I am most fortunate to enjoy undetectable PSA and T averaging 500. I will be 71 in two weeks and am enjoying life and my family; especially my seven year-old granddaughter. When I started my journey in early 2004, the statistics told me that I had two to five years to live. Screw statistics! Never forget that you are a Statistic of One! You are what matters, not some population with various side effects, ages, degree of disease, and most of all very positive thoughts and environments.

I wish you the best in your fight. Keep kicking the bastard down.

Gourd Dancer

GeorgeGlass profile image
GeorgeGlass in reply to

Thanks Gourd, I appreciate your information. I agree with you and I am doing well with eating and exercise but I'm getting ready to try and take things to another level by adding yoga, meditation, positive subconscious reprograming of my mind, and some related techniques like kagan water (probably a waste of time but only $20 a month so why not).

I have a few questions of you:

1. Are you suggesting to do the chemo? They offered me that, but I think its unproven as to whether it helps in the long run or if it increases the speed at which the cancer mutates, as some contend?

2. The 4mg of androgel twice a week that you take...Is that in conjunction with Lupron or another treatment? What is the purpose of that for me? I have a T level of 800+ with no medical assistance?

3. You said, "The only problem was how to kill the cancer without killing the patient. I believe that I am there." Thus far his hypotheses have born fruit? " - How does that translate into what I should do in order to extend life/not die from the metastatic cancer in less than 10 years? My plan is to try and use Lupron, zytiga combo and the natural health things I'm doing in order to get out to the late 2020s where there might be a genetic splicing type of revolutionary treatment that can give us another 20 years or so after that.

Thanks again for your advice and encouragement.

George

in reply toGeorgeGlass

George, I apologize if I was not clear. 1. On May 4, 2004, on confirmation of mets, I took my first Lupron injection. I sought out a more aggressive approach when told that hormone therapy was only palliative. By June 7, 2004, I made my decision and entered a six month chemotherapy and hormone therapy trial with a Medical Oncologist Professor and Researcher. On February 10, 2010, I took my last Lupron injection at the suggestion of the same Medical Oncologist. He told me if PSA rises, then you go back on Lupron. What have got to lose? After a year my PSA remained undetectable and my T remained under 5. So, again, under the hypothesis of what have you got to lose, I started with the Androgel. I am a proponent of aggressive treatment. My last testing on November 15, 2007, yielded an undetectable PSA and T of 650.2.

Let me add that since I started this trial, I have had 19 scans and 74 PSA tests. My blood work runs three pages of various tests. I have been closely monitored. My next bold work will be on March 20, 2018.

2. When I started the trial my goal was to keep T at less than 5. My the low dose T supplement is very difference from current studies of high dose T supplement. Others my undergone with good results, but I have particular knowledge. I have seen write-ups, but that is all. I have no desire nor would I ever criticize ones' treatment, but taking a Lupron holiday with a 600 T would concern me if I were in your shoes.

3. Tough question. I found my answer with the six month chemotherapy and hormonal therapy trial. I know that I was in his first grouping and that he has treated over 600. I have posted my group's results in the group. Note: Not everybody had a complete response to therapy.

From a paper e-published April 2013. I do not know when it was originally written. Median progression-free survival (PFA) was 23.4 months. Median overall survival (OS) was 53.7 months. Out of 45 with measurable disease, 22 patients had an objective response: 9 patients achieved a complete response; 2 patients achieved a partial response; 10 patients achieved stable disease. I am one of the nine. The abstract can be found at ncbi.nlm.nih.gov/pubmed/236...

Gourd Dancer

GeorgeGlass profile image
GeorgeGlass in reply to

thanks Gourd Dancer. Great information. Can I ask you what your PSA was and your highest Gleason Scores BEFORE you started the chemo and Lupron in 2004? Thanks again,

George

in reply toGeorgeGlass

George my PSA was 32.8 when scans shoed metastatic cancer; the year before Gleason was 7 (4+3). After diagnosed with PCA, I never went back to my Urologist. Went straight to a Radiation Oncologist in San Antonio for seeds and a separate one in Houston for IMRT. They were stationed together in the Air Force and best of friends. The one in Houston is a Professor at a Medical School and helped developed the IRMT machine.

GD

GeorgeGlass profile image
GeorgeGlass in reply to

GD, so you did radiation treatments before you ever did the chemo, is that correct? I'm trying to decide if I should still consider chemo and Lupron, after being on the Lupron for over a year. Or do the zytiga Lupron combo instead.

in reply toGeorgeGlass

George my primary treatment was Radiation; both seeds and external. This was planned to give me the best chance. Same percentages as surgery. Unfortunately, it did not work. My Medical Oncologist told me that it mattered not which primary treatment I had as micro-metastasis had already taken place. And to not second guess. I chose early intervention with this chemo trial simply because, I did not want palliative treatment. I wanted a chance at cure and that could only happen by killing the cancer cells traveling around my body via vascular and lymphatic systems.

Discuss with your guy. Find the most experienced Medical Oncologist that doecisluzes in Prostate Cancer. A Researcher, if you can find one. They are all associated with Medical Schools where they teach and have lab facilities and staff for research. My guy was at the Medical Schools associated with first, the University of Texas, then Baylor, and the Cornell, and then back to the auniversity of Texas. My hospitals associated with these schools are all in the Texas Medical Center. Methodist and Memorial Hermann. I have friends also go to MD Anderson and St Luke's. Importance to he is that all of these guys sit on joint committees with the Medical Center complex.

I was fortunate that I was able to participate in the trial after three successful rises in PSA within a year of my primary treatment - 6.8 to 12.4 to 24.2 to 32.4........ frankly, I spent 4-8 hours late at night researching when it was quiet. I was struck with the stats in 2004 - that I had 2-4, maybe 5 years to live with palliative treatment. I recognize that great strides have been made in longevity over the past 14 years; but then, I just wasn't content to lay diwn and do nothing.

I'll never forget, the almost three hour first time consult with Doctor A when he remarked, " we found the cure for cancer in 1978; however the problem was killing the cancer without killing the patient first with the treatment. I think that I am there." Important was strong body and tumor burden minimal; not as a last ditch effort when the body is weak and the tumor burden invasive.

I also recognize that they are a lot of PCa patients cringe when I write this. The paradigm is completely reversed from standard treatment protocols.

I wish you well in your informed decision. To me, the good fight was paramount.

GD

FreeTuneUp profile image
FreeTuneUp in reply to

LUPRON 6 MONTHS: My first 6 months shot was 3 weeks ago. Wish I had never taken it. I felt tremendous before taking the shot. Dx PC in 2004 (14 years ago) but just started radiation therapy 2 weeks ago. Gleason 7: 4+3. Cancer of prostate with slight involvement in Neuro-Vascular bundle (nerves & blood vessels) close by. PSA been high for years (120 to 75 range ... now 26 after taking Lupron 3 weeks ago.) How long does it take before I stop having negative mind junk: depression PLUS lack of energy. I want to feel like a man again. Now, I'm even thinking of stopping the radiation therapy. I should have researched more, but the doctor(s) should have provided a little (if not, MORE) insight on how bad this Lupron med is.

in reply toFreeTuneUp

George, I don't know what to write. Through Feb 2010, I took the 3 mos variety of Lupron. Unless there have been major miracles, hormone injections is how PCa is kept at bay until the day it stops suppressing PSA - castrate resistant. I never faced that. They are plenty of people here who have.

I took a different path than as as soon as my PSA jumped, I had mets and immediate underwent a six month chemo trial.

I do want to encourage you to stay positive and do not let this disease get you down. I was never depressed. I fought that battle the 15 months prior after a double by pass. It lasted all of a day when I decided that to remain so was stupid. Again there are others who have expressed more do than me.

I wish you the best in your treatment. Follow the advice of your PCa Specialist. Hopefully as I expressed they are cutting edge. Always remember that you are a Statistic in One. The alternative is death. Keep kicking this bastard down.

GD

GeorgeGlass profile image
GeorgeGlass in reply to

thanks GD, were you meaning to respond to "FreeTuneUp"? He wasn't doing well on Lupron.

GeorgeGlass profile image
GeorgeGlass in reply toFreeTuneUp

FTU - My suggestions are simple. These work for my negative thoughts. Do all of them. It will work but wont get you to where you were before the Lupron. only Lupron holidays/breaks will do that for you.

1. Sleep at least 8 hours

2. Eat very healthy - oatmeal with seeds and nuts and fruit for breakfast ALONG with low acid healthwise coffee and mushroom coffee. This is essential for energy and motivation.

3. eat salad or vegetables and some healthy fish for dinner. don't even need lunch but if you do, have a small salad and nuts. everything organic.

4. Drink matcha green tea powder and rose hips with hibiscus tea 1-2 times a day for energy, mood boost and antioxidants. also add the turmeric and ginger to the tea.

5. if required, have another cup of the coffee mixture that you had with breakfast. Just don't drink coffee after 4pm.

6. workout - cardio and weights EVERY DAY

7. work in golf, tennis, yoga, meditation

8. spend time in the sun early morning and late afternoon and spend time with people who make you laugh. also watch tv that makes you laugh.

let me know if these things help

george

Armystyle profile image
Armystyle in reply to

Gourd, 3 spots in bones 1 centermeter, Lupron,

Zytiga, just started, Gleason 9 age 70

Doctor is optimistic,

Says I have yrs & yes,

But I am scared to death

Armystyle profile image
Armystyle in reply toArmystyle

Psa 5

in reply toArmystyle

Army, I certainly understand. The decisions which I made at age 57 really don't relate to age 70. Now, many will disagree with me, but that is ok. Sure, it's scary, but stay positive, find the best MO that soecislizes in PCa -preferably in research, trust in your zcreator and accept Prayer and kind thought from all people from all religions. Above all, remember that you are a Statistic of One - regardless of the numbers that people quote, the only number that affects you is yours. That is what I did.

There has been a lot of progress made in metastatic PCa over the past 14 years. I mean, then, the numbers said that I had 2 - 4, maybe 5 years to live; and at age 57, I was determined to go down swinging and give it my best shot in fighting this disease.

I can tell you this from experience, fretting over a death sentence, is not positive. Please stay positive and live and enjoy your life. I do not think that I ever got nervous nor apprehensive about what my blood draw revealed. It is what it is and no amount of worrying will ever change the result. Now go out and kick the bastard's butt!

GD

Armystyle profile image
Armystyle in reply to

Thanks gourd. Seeing onoclogist at

Hospital. She specializes in PC & does research as well.

Tommyj2 profile image
Tommyj2 in reply to

Hello.....

I'm a little confused. Am I reading that your MO has you specifically increasing your testosterone??... is this part of a plan to bring back testosterone and then depress it again months later ( I've read of such a new protocol) or is he telling you that you are "cured" of the cancer ( a term I have never heard related to cancer)

Good advice re: avoiding statistics... most are based on old findings and have little bearing on the drug protocols available today....hell....most of the people on this forum have defied these stats by a wide margin. BUT... whatever you are doing it sure sounds like you should keep doing it!!

in reply toTommyj2

Tommy, since 2010, my research MO has stated that he can’t find any cancer in my body. Hence stopping Lupron and a year later trying to restart the production of T; knowing full well if PSA rose, I could always restart Lupron and stop the low dose of testosterone. Yes, he and I understand my results as well as eight others. I believe that the stage is set for some great things to come. However, it takes time to get standard approval and understanding why I am fortunate.

I would encourage you to read the trial summation or trial results. I have previously posted. You can always search, Trial of Chemotherapy plus Hormonal Therapy as Initial Treatment for Unresectable/Metastatic Adenocarcinoma of the Prostate for first paper and A Phase II Trial of Androgen Deprivation Therapy (ADT) plus Chemotherapy as Initial Treatment for Lical Failures or Advanced Prostate Cancer. The former is about 2008 and the latter 2013.

Or try: ncbi.nlm.nih.gov/pubmed/236...

GD

in reply to

Thats a fine statement ...by your MO .. awesome. gd

Tommyj2 profile image
Tommyj2 in reply to

Now THAT would appear to be great news!!!

j-o-h-n profile image
j-o-h-n

Erections? what the hell is that?

Good Luck and Good Health.

j-o-h-n Thursday 02/01/2018 6:44 PM EST

GeorgeGlass profile image
GeorgeGlass in reply toj-o-h-n

Lol. Thanks

GOLFER72 profile image
GOLFER72

THERE MEN STILL ALIVE AND DOING WELL WHO HAVE BEEN DIAGNOSED WITH STAGE 4 METASTATIC PROSTATE CANCER UP TO 18 YEARS AGO. i WAS DIAGNOSED WITH SAME OVER A YEAR AGO DOC SAYS HAVE AT LEAST 10 YEARS AND BEYOND i AM 76 VERY FIT AND HEALTHY DOING SO WELL I GER 4 TO 6 WEEKS OFF LUPRON AFTER EVERY 3 MONTH INJECTION, I AM ALSO BEING TREATED WITH ZOMETA TO STRENGTHEN MY BONES WHICH A RECENT FULL BODY BONE SCAN REVEALED THAT IT IS WORKING. PLEASE UNDERSTAND METASTATIC PROSTATE CANCER IS NOT A DEATH SENTENCE I PLAY GOLF 4 TO 5 TIMES A WEEK DOC SAYS MOST LIKELY WILL DIES WITH PROSTATE CANCER NOT FROM IT.

GeorgeGlass profile image
GeorgeGlass in reply toGOLFER72

that's great to hear. Its clear that active people with happy lives and optimistic minds do very well. The mind is so powerful and many of us probably got the cancer partly because of stress or unhappy lives. I will keep playing golf, tennis etc and working on my happiness. what was your gleason score and psa before you started the Lupron? have you considered the zytiga with the Lupron?

GOLFER72 profile image
GOLFER72 in reply toGeorgeGlass

Psa only 8 something goes down to zero after Lupron, gleason scores 8 n 9

GeorgeGlass profile image
GeorgeGlass in reply toGOLFER72

Ok thanks golfer.

in reply toGOLFER72

That 8 and 9 ain’t good . I was a 4+4... master the short game .. keep golfing ..

in reply toGeorgeGlass

George I was one of the many living the stressful life. I do believe that was part causation for me to acquire APC #4 T-4 ,plus dam stubborn male “ I don’t need no stinking doctors”. Ooppps ...cool and collect was never my strong suit, now I’m learning slowly like a turtle.. keep moving ..even as a turtle... I am ...

GeorgeGlass profile image
GeorgeGlass in reply toGOLFER72

I have to remind me that nothing is set in stone. talking to the docs makes it seem like a 4-7 year demise is imminent for me even though they haven't spotted the cancer on a ct yet. I huess they are basing things on how past my psa doubling rate is. Below 6 months doubling rate is very bad for longevity. My doubling rate is every 3 weeks when I'm not on the Lupron.

in reply toGeorgeGlass

Love that Lupron..

Lunbo profile image
Lunbo

After being on Lupron for a year and PSA my started rising my MO moved me to Zytiga and Prednisone which lasted for 5 years until PSA spiked to 14 now on Xtandi with P and PSA stablilized---be aggressive go for Z.

GeorgeGlass profile image
GeorgeGlass in reply toLunbo

Thanks lumbo. I agree. I'll go for it. How much worse are the side effects? I'm sick of the doctors acting like the drugs are worse than they really are. That led me to where I am now because the old radiology guy was telling me not to do lupron with brachytherapy because lupron side effects were horrible. Well I was on lupron for a year and although it's no picnic, it's nowhere near as bad as he said. He may have costed me and allowed metastasis. I'm going for aggressive now so I can be alive for the next big breakthrough treatments next decade.

Armystyle profile image
Armystyle in reply toLunbo

On zytiga, got 2 month

Co pay assistance. After that 3000 a month copy,

What am I to do

Pay 1 dollar a month for two months

Mormon1 profile image
Mormon1 in reply toArmystyle

I am interested in your statement but I have no idea your point? More facts, please.

in reply toLunbo

Z & P for 5 yrs excellent!

Lunbo profile image
Lunbo

Initially some dizziness, fatigue, but little else and much better than the beginning of Lupron. I'm also on Xgeva for bone mets. Good luck!

GeorgeGlass profile image
GeorgeGlass in reply toLunbo

thanks Lunbo, the biggest issue now is getting my insurance to pay for the zytiga because ordinary ct scans have not spotted my cancer yet, only the PSMA PET scans did, but insurance companies don't recognize those. If I push my doctor I think I can get her to say the right things to the insurance company. This same doctor is even suggesting that I could do intermittent "breaks/holidays" from the zytiga, pred/ Lupron treatment. Have you heard of anyone trying this break just like people often do with Lupron alone?

george

GeorgeGlass profile image
GeorgeGlass

Thanks again. I would be convince the lupron with the zytiga and Prednisone. One guy on this site said he does 5mg of Prednisone instead of 10 mg and it reduced his side effects.

GeorgeGlass profile image
GeorgeGlass

Lunbo, where did your bone pain start? Was it a continuous pain or intermittent? I have mild pain in the flat area just above my buttocks. I cant tell if its from basketball and sitting at dinner table or due to the cancer. I'm waiting for the darn doctors appointment next week to start on the Lupron again. My PSA is up to about 9 or so again as of this week.

Lunbo profile image
Lunbo in reply toGeorgeGlass

George ---I would opt for Zytiga plus Pred. with lupron as worked for me along with Xgeva to slow bone mets, with which I have had no pain. Try going to JNJ to get patient financial support for Zyitga. Wishing you good luck against the beast...

GeorgeGlass profile image
GeorgeGlass in reply toLunbo

Johnson and Johnson - JNJ?

Do you know/believe that the STAMPEDE study is unbiased. One man on this site said that his dotor said it was a biased/scewed study designed to get people to buy Zytiga. It seems to me that if it was bogus, many of people would have discovered that by now.

GeorgeGlass profile image
GeorgeGlass

For anyone still following this thread, I never really got specific answers to this question, except one person suggested going for the zytiga prednisone Lupron combo as soon as I can.

Should I wait for Lupron to fail before adding zytiga and prednisone OR add the Zytiga now, before the Lupron fails????

STAMPEDE would suggest I start Zytiga/pred now but Id have to fight with insurance because my cancer isn't visible on CT scans yet (just PSMA/PET scans).

I'm concerned about the lower quality of life on Zytiga too, although some mentioned that it isn't much worse for them, or not worse at all.

Lastly, has anyone heard of "holidays/breaks" from Lupron/zytiga/prednisone combination treatment??? My doctor is suggestion this as a possibility for me.

George

Joes-dad profile image
Joes-dad in reply toGeorgeGlass

I'm doing Firmagon + Zytiga + Prednisone at the same time. I didn't want to second guess myself later plus I knew I could always change it if I had bad side affects. I'm not having any issues taking the Zytiga + Prednisone. After reading the stampede and latitude trials, I was convinced this was the right plan for me,

Lunbo profile image
Lunbo

My MO said that average efficacy for Zytiga was 11-14 mos. But I got a 5 yr run on it plus Prednison and Lupron with Xgeva for bone mets--so I don't think it is overhyped.

GeorgeGlass profile image
GeorgeGlass

Thanks lumbo. What are your added side effects with zytiga? Not the lupron side effects.

Raymonda100 profile image
Raymonda100

If the doctor gives Lupron via injection in the office it is covered by Medicare Part B. If not, it may or may not be covered by a Part D plan, and the cost is as prohibitive as Zytiga.

Tommyj2 profile image
Tommyj2 in reply toRaymonda100

Generally procedures ( and meds) that must be done in an MD's office are covered under part B.... Can't say definitively re: this particular capsule but I'd consider it a none starter if I was the one facing paying for it under part D..... The vast number of patient assistance programs will not pay for drugs if patient has medicare D coverage....... some of cannot AFFORD to stay alive under these circumstances....

Nalakrats, thanks for asking. No, mine is in Houston at the Texas Medical Center which has multiple hospitals and medical schools as its hub; all concentrated in a large complex. There are at least ten academic and research organizations in the complex.

Treatment: Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days. In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. 30 mg of Prednisone everyday through the three courses of chemotherapy.

Nakarats, you can readily see that this trial is different from today's typical chemo/ hormone treatment for metastatic prostrate cancer. It throws all drugs known to have cancer cell killing properties at once rather than piece meal. For example, just look at the administration of Taxotere. Every other week for six weeks and a total chemo break for another week reoeatlted three times. Compare that to 6-9 twenty-one day cycles "approved" by the medical community in an effort to do no harm. In trials, sometimes the rules are thrown out the window. After my initial 2 1/2 hour consult where my guy gave me a complete overview, I signed the papers and put my life in the hands of a pro. I have total confidence in the ability of my MO and if he says, "Jump." I jump. To put this in perspective. Everything that I read, told me that in 2004, I had 2 - 5 years to live. Palliative treatment in my mind was not an option. I was going to die. I did not want to make it easy for death and was most fortunate that my two Radiation Oncologist told me what they would do if they were in my shoes and I able through academia find the right guy to try a cheat my prognosis.

BTW, as I explained my treatment to another Medical Oncologist in a hospital during a total knee replacement, he remarked quickly, "That will never work!" I am not spiking the football to him, but his comments speak of the established training received by those who treat Metastatic Prostate Cancer.

After my February 2010 injection of Lupron. My MO suggested that I stop. My response, "But won't my PSA rise." His answer, "I don't think so, but if I am wrong, we can always start Lupron again. Mike, I can not find any Cancer remaining in your body. Let's find out. Besides you will feel better to do the things that you like to do." As a check, six months later I had a complete set of scans - all negative for mets; only resolved mets with new bone growth.

A year later, testosterone remained at less than 5.0. My MO suggested that we try to jumpstart testosterone production. Me, "but Doc, doesn't testosterone feed Prostate Cancer?" Doctor A, "Yes, if you have Prostate Cancer. Look I know that you are a realist and everything that you read says Advanced Prostate Cancer can not be cured. I have doesn't my entire career looking for a cure. All my tests indicate that the cancer Is resolved. The downside, you start back on Lupron if PSA rises. The upside, testosterone will allow you to get your body back in shape. Don't you want to know?"

Five years later in November 2016, I had another complete set of scans with the same results. Until then, I had doubt as to remission, cure, etc. finally I started to believe without a doubt what my Medical Oncologist and Cardiologist have been telling me - you are cured.

I continue to be followed with complete blood work (a little over three pages worth of results.) with the two most important results, PSA - undetectable and T - ranging from roughly 360 to 700 depending on when I apply the gel.

I know that this sounds too good to be true, however, it is fact. To me, the keys were very early intervention of chemo in a trial with zero shortcuts, the knowledge and skills of my Medical Oncologist researcher, love and positive support of family and friends, acceptance of Prayers from all religions across the Globe, and the re-enforced belief that my job on this Earth is not done so the Good Lord is not ready to take me home yet. I have never been overtly religious, yet I believe.

I don't want to bore, however, I do want others to know of my journey and it's successes that someday may be accepted. And, the only way that will happen is through evidence-based data. From my perspective, I go back to the trials original hypothesis. Is it not better to utilize early intervention of chemotherapy while the body is strong and the tumor burden minimal? Why wait? Why fear? Kick this bastard's butt early and hard. What have you to lose?

So glad that you found a Research Medical Oncologist as they are really current on treatment and what is happening before academia teaches a standard care protocol. The best thing is that reaction is much quicker.....

Gourd Dancer

pinejog profile image
pinejog

Me

Hello everyone I am new to your forum and could use a little help I had my prostate removed in 2011 with radaiation shortly afterwards. I have been on Xtandi and Lupron for a little over over a year Before starting Xtandi my PSA was at 196 Since I began Xtandi and lupron my PSA has moved from 40 to 69 where it is currently. My T level is 21.

My MO is leaving it up to me if or when to move to Cemo.I have a break in my employment and need advice if this might be a good time to give cemo a shot.

All this is made even more complicated with the reality I fell great.

Thanks

TEBozo profile image
TEBozo

Prostate removed on January 4 eight week postop PSA was 2.8 at 10 weeks was 2.68. Found three out of 14 left nodes positive.Gallium PSMA PET/CT at UCLA last week showed 3 more. Nothing in bones or elsewhere. Prostate Oncology Specialists in Marina Del Rey, CA gave me a Firmagon shot which I am tolerating well. Want me on Lupron in 3 weeks and Zytiga/Predisone, too.

Dallas doc at UT Southwestern only wanted to do Lupron and "hold Zytiga in our back pocket." I don't have a second chance to strike the first blow. I am a young 67 the plans on being around for a while. Anyone have some thoughts?

GeorgeGlass profile image
GeorgeGlass

I'm on 53 and I'm using Lupron only. There were two studies that showed good (extended) lives with Zytiga added, although they didn't compare to Lupron followed by Zytiga. For some people, Zytiga immediately after Lupron starts to weaken in it's effectiveness, works for many years. For others it works for a short period. The reason me and some others dont start Zytiga asap is due to it's increased side effects and lower quality of life on average. If you tolerate the Zytiga well then stay with it. If you dont, then relook the situation.

timotur profile image
timotur

Just started adjunctive ADT 5 weeks in prep for HDR Brachy in a few weeks. Scholz at POS recommended Casodex, Lupron, and Zytiga together. Due to delays in approvals, and whatnot, the first 3 weeks on Casodex alone, dropped PSA from 33 to 21. Then adding Zytiga+Pred for last two weeks PSA further dropped to 4 on just 3/4 dosage of 3x250mg (my choice to ramp up). Haven’t had a Lupron shot yet and T measured < 10. I’m tolerating Z very well, ALT and ALP are elevated slightly over ULN.

So the question is, should I even bother with Lupron since T is negligible, and PSA has dropped 86% in 5 weeks?

GeorgeGlass profile image
GeorgeGlass in reply totimotur

I think you should post this question separately so you can get more of the experts to respond with answers.

TEBozo profile image
TEBozo

Did you have your prostate removed?

GeorgeGlass profile image
GeorgeGlass in reply toTEBozo

No, It was fried by the brachytherapy.

1Warrior1 profile image
1Warrior1

I started zytiga 9 months into Lupron.

I personally have no side effects from the addition.

It’s a pill . I take 250mg with a low fat breakfast and 5 mg of prednisone.

My oncologist worked with Mayo and said it would increase my odds of BCR.

I had a RP and dx PT3b N1 M0

Got my first ultra sensitive Psa dec20 at <.006

Good luck in your journey

GeorgeGlass profile image
GeorgeGlass in reply to1Warrior1

thanks warrior, great to hear that zytiga is not causing you additional side effects!

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