Advanced Prostate Cancer
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Introduction

I am new to the group and had a question about Lupron.

I am 61

I am stage 4 with Bone metastasis

PSA 134

Quality of life poor

What to do next? I really don't know.

I am on my first script of casodex and they are wanting me to go on Lupron. However, I am highly resistant to go on it due to all of the horror stories I have read and heard about. Knowing the alternatives, I don't want to be making a mistake at this point, of course, thinking there may be a alternative, such as testosterone replacement therapy. I survived pancreatic cancer and the after effects of it and this is tiring. Now i,m looking at castration. I hope this isn't too gloomy of an intro.

Thanks

Wish you all well.

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I would at least try Lupron before castration. Lupron is reversible if it is intolerable, but I think you'll find you can tolerate it since you're already aware of some things to watch for. Early in my battle I would cry when I got the shot (emotions, not pain). Not so now. I know it helps keep me going. Good luck with your decision!

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Hi Oscar, In this business we go with treatment of lesser toxicity for the most part First, Your Dr. has given you casodex to prepare for the flare caused by initial Lupron, good move, and Lupron is recommended first course of action, get a fan if you have to many hot flashes, Lupron works very well for most men ,In recent studies for men presenting like you adding a 6 round course of docetaxol has been shown to improve survival and should be done if you are feeling OK. How old are you and what was your original Gleason score, are you seeing a medical Oncologist at this time, hopefully one at a highly rated hospital ,one affilitated with a major teaching college. You are just at the beginning of this, you have many options ahead to stem progression hopefully for many years to come, don't worry about side effects unless you have them, learn all you can become an empowered patient as it should be you making final decisions, I presented lil over 11 years ago similar to you except psa 148, went for 8th chemo today, chemo that I feared for so many years is not that bad at all, last month my hair started coming in again while on chemo, but now it is the original color and hardly any of the grey I had before it fell out. As others on this list have mentioned it is important to have a Medical Oncologist who can have a two way conversation about what is going on, and the more knowledgeable in current trends in prostate cancer preferred, things are changing so fast in Prostate Cancer in past 10 years. Make sure he checks your testosterone while on Lupron and it would be recommended to have your vitamin d blood test done.

all the best, Dan

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I'm sorry you have to be in this situation, but glad you found this group. Reading your introduction sounds so much like me when I was diagnosed. I'm a couple years younger and had a PSA of 400 at diagnosis. I remember the low point for me was right after all those endless diagnostic tests, painful bone biopsy, needles sticks, constant trips to hospital for this test and that appointment. I had just started Casodex and I was still in a lot of pain, depressed over the diagnosis of stage 4 cancer, etc. I could barely walk and had pain all over my body. I remember asking my doctor "Why I am even doing any of this?"

But then, a few days after starting Lupron, I distinctly remember waking up one morning and thinking to myself: I'm getting better! My pain is going down! Suddenly my mood completely changed in that instant. And it just got better and better from there. My PSA started going down. First to 12 in one month, then .6, then .5 and now only 4 months later it's .3 !!! And it may still go down more.

Yes there are side effects, I have hot flashes and no libido. On the other hand, I have a great quality of life now and was completely pain free after 4 weeks.

I'm also doing early chemo based on the recent trials done (Chaarted and Stampede) which showed a 13 month average life expectancy with early chemo over just ADT alone.

I know how hard it is when you are first diagnosed to start treatment and I also had a lot of fear about what it was going to be like. I read a lot of those horror stories too, but the problem is there are more people who write about negative experiences than positive ones so you really don't get a true representation. For me, Lupron has been a real miracle. I feel it has given me another chance at life. There are so many positive benefits that outweigh the side effects. It's well worth it.

I hope you start getting better soon. We're here to help and support you.

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Hi Oscar,

I was diagnosed over 3 1/2 years ago at age 65 with prostate cancer metastatic to 20+ bones and several lymph nodes, and a PSA over 5,000. I've been on "Lupron for Life" ever since. I get it as an easy injection in an alternating hip, once every 90 days. The side effects of Lupron have been tolerable for me - none of them reaching the level of "horror story" by any means.

With bone mets, you might also be asking your doctors about a bone strengthening agent such as Xgeva (denosumab) or Zometa (zoledronic acid).

Charles

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Oscar, hang in there pal! I've been on Lupron for the last 15 years and still have a great life. I have a great lady and a bunch friends that I meet with regularly and a little motor home that we travel in occasionally. With out Lupron I probably wouldn't be here to enjoy this great life. Yes there are side effects, but nothing you can't handle. The hot flashes are the most prevalent for me, but my lady and most other women deal with this as a matter of aging. If they can do it we can do it. Mood swings......not a problem, you can keep that in check if you try. Muscle loss.....maybe it is part of getting older? Man boobs.....well, what can I say? If yo grope me, I'll hit you with my purse! Get started on the Lupron, it's not that bad. Enjoy the rest of your prolonged life. Works for me and it'll work for you. Be thankful we've got it.

Norm

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Norm as a guy with constant Zoladex (Lupron) shots, 10 cycles of easy chemo and now Zytiga I agree with all your comments and your approach. Stage 4 multiple multiple bone mets, Gleason 4 + 5, 12 cores all cancer, pelvic girdle lymphs mashed. Am in good health and next time I buy a dress and full outfit I'll invite you to help me choose the colour!

David

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Hope you like pink with white trim.

Norm

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How did I know you knew?

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"Testosterone replacement" is not a treatment for prostate cancer. Something called BAT is, on a trial basis. It is superphysiologic levels of testosterone, and once/month, for roller coaster levels of testosterone. But you need to be on Lupron (ADT) to be eligible for that trial.

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Not only that but I am pretty sure you have to have CRPC...where BAT has had some success in making PCa hormone sensitive

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Hi Oscar,

Welcome to our group.

One important thing I want to tell you - Horror stories are only for kids and not for us!

Look at the excellent replies : Dan59, gregg57 and also the others. I don't think I have anything more to add other than pushing you to follow their good advice and help you to get rid of your undue fears. Soon enough you will see how all of us fight bravely against this enemy. Feel free to put your questions to our form at any time.

Wishing you the best in your treatment strategies.

Sisira

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Firmagon is an alternative with fewer symptoms that does the same thing as Lupron. You must get on ADT or risk serious metastatic disease. I've had PCa for over 20 years. After the biochemical failures of surgery and radiation wash out I've been on Lupron intermittent treatment for almost 10 years and it's still working. I take 5 mg. of prednisone twice daily. It reduces my inflammation and other problems and allows me to go almost three months beyond my three month shot until my PSA climbs significantly. That allows me to recover and reduces some potential cardiac and osteo complications.

Find a young oncologist with research experience who is familiar with all the new drugs and procedures. Read everything you can get your hands on. Fear is a mind killer. Get over it and survive for as long as you can with a quality of life that you find acceptable. Neither God nor man can save you but they will help you prolong your life. PCa growth declines in old age for most so perhaps you'll be one of the lucky ones. Prepare yourself for biochemical failures and learn to accept them as the price for living. Faith can be of great help. Don't look for miracles but don't stick your head in the sand like an ostrich. Lupron works. Everything has side effects. Listen to your Oncologist. If you don't trust him find another. Waiting in your case is simply going to make things worse.

God Bless and good luck.

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I'm going to repeat Attitude67: Waiting in your case is simply going to make things worse. I wasted time at the beginning and delayed my treatment. Meanwhile, my cancer was taking off like a runaway freight train. My PSA went from 300 to 400 in a few weeks and my pain went from bad to debilitating. Please don't give the cancer ANY time to grow.

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Oscar, i like the notion of getting the best doctor trained in oncology and urology who specializes in PC and is on top of the latest trials and networked with GoTo experts (e.g., teaching hospitals). Also join a good support group like US TOO and stay tuned to this group.

Casodex and Lupron seem to be a common treatment for someone with your diagnosis. However, there are other , more aggressive, treatments out there for newly diagnosed patients.

My diagnosis was the same as you and I went went the standard route. I'm now.on Lupron and Xtandi and have been able to tolerate the side affects of both.

Keep th faith

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Hollo afab. I jusr started xtandi with lupron and avodart. What dose xtandi are you taking and whaat trial are you in. How many bone mets and where is your trial and doc. for follow up. Thanks. Rococo

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rococo,

Were you not on Casodex monotherapy until it failed?

Rich

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I'm in a UCSF study that compares Xtandi only (me) to Xtandi/Zytiga control group. I think Study is now closed. Dosage 4 pills. Milligrams not stated. Pills are whit and large.

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Rococo, My oncologist/urologist in the "Go-To" PC Cancer Doc at Kaiser Oakland, CA. Her name is Andrea Harzstark.

I have one femur bone met in each leg. Taking Xtandi shrunk each tumor by about 40%.

art

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Look like you have the pc under controll and thats the main thing. If using only . Using only xtandi to get this response may last many years and if your arm shows that response it would be great for all, I just wonder if adding avodart would improve it. Hope to hear positive results from you for many, many years. Rocco

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Thanks Rococo, I've also been on Lupron since 3/14. When my PSA started to rise to 2.5, my Doc got me into the Xtandi Trial on 12/15, so I'm taking both drugs. So far so good. My PSA remains undetectable; my scans, bone and Ct remain stable.

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Hi, Oscar,

My take on OUR situation is this: for guys with advanced prostate cancer, Lupron is just a fact of life. First of all it seems to me to be a well-established fact that Lupron is the first line of defense against this disease. It is one of the first treatments that we all get, and most later treatments are earmarked for cancers that continue to grow in spite of Lupron. Second, Lupron is a fact of LIFE. It is the price we pay for living longer and better lives. All the downsides you've heard about are real, but much less scary in reality than in your imagination, and to my mind they beat the alternative: a shorter and more painful life.

So, buck up, my friend. You've been given this awful diagnosis; all of us have, and we all know the shock and terror of the first weeks or months after the diagnosis. But it is not a death sentence, at least not if you choose the therapy your doc recommends. You can trust the advice of this group. You CAN live a happy and productive life with the side effects. You may not be nearly as happy or productive without Lipton

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Sorry that you are here. Yes, some of the side effects of Lupron may suck. But know this, they are not as bad as you might think. Many men do not have any. I have been on Lupron for a bit over a year. During that time I still ride my bike (up to 60 miles), SCUBA in the Caribbean, walk about 7 miles a day, and generally enjoy life. Please try Lupron for at least six months before you decide on castration.

By the way, there is a study that just published there results that you may want to consider. It is called the Stampede trial. It showed significant improvement for advanced cancers using a mixture of Lupron and Zytiga. I know that taking an additional drug may not be what you want to hear when you have questions about Lupron, but you may want to consider it.

nejm.org/doi/full/10.1056/N...

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I recommend looking very carefully at Stampede and Chaarted. My Onco part of development team for Stampede and I have advantage of being put on similar programme. So far so good. From my 200 to a constant 0.03.

More results next week. We are surviving in radical medical times, for the better. David

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I was diagnosed in Mar of 2015, had prostatectomy a little over 2 years ago. Surgery revealed spread to seminal vesicles and at least one lymph node. Prostate treatment is from now on. When told about Lupton by Dr, I told him it's for now on. The idea of in injection every few weeks to months, I told him that I would rather have surgery once (under anesthetic) once than have a Lupton injection every few weeks forever. I HAD SURGERY (castration) and glad I did. PSA went to .06 and been constant. The end result is the same, but once and it's over, rather than multiple injections for the rest of my life

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My. Husband Mike has been on Lupron since 2012. When he took a 14 month break from Lupron his prostate cancer moved into his lymph nodes. He needed that protection but the doctors wanted to test not having any protection to see the results of no protection would have on Mike- BIG MISTAKE- now he's taken radiation again, Zytiga, xtandi, provenge and now on jevtana chemo- I'm not saying that the cancer would have never moved to his lymph nodes - I'm just saying he would have had more time without all the problems-TIME is the important word here-

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Oscar,

Don't worry. The important thing is that you're here. I hate like hell that you're here, but I'm glad you found us. This is a club that nobody wants to join, but it's really helpful when navigating these uncertain waters. Sometimes just reading our many stories can help you feel less alone. Sorrow shared is halved, Joy shared is doubled, and yes- we do have joy here, too.

Welcome, brother.

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Hey Oscar,

I've been fighting my stage 4 for nearly 10 years now. Gleason 10. I started a double ADT including Casodex (Bicalutamide) PLUS Eligard 3-month shots nearly 3 years ago. Undetectable PSA since. Managing the side effects just fine, working full time, Venlafaxine for hot flashes is a mood enhancer so my anxiety is also lower! Try what is likely to work. The bark is worse than the bite.

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Wow, What a response!

Thank you everyone for all of your excellent, informative, positive responses. This is just what a person needs when faced with such a deluge of information and decision making. With no one to talk to or bounce questions off of, a person feels isolated and uninformed in trying to deal with it all. I am glad I found this group. Your post helped to push me off the Lupron fence. Thanks you guy's.

I would like to catch up to Dr Who with his activities. I just don't know how I'll be able to get to the Caribbean's. I have always dreamed of going down to the marina and taking off in my sea plane whenever I wanted. Alaska for fishing or bear hunting, San Diego for dinner, Caribbean for a scuba dive then home for a Lupron injection.

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You'll be amazed at how much you can accomplish between Lupron injections.

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Osca, I am 82 , been on lupron for 4 years. Worst sides are the hot flashes but, hey I' m still here and not feeling that bad. I am shooting for 90. All started with Gleason 8, bone mets, same deal biopsies to back, radiation. I feel I have a great doc. Glad you found us, these guys are a great support group. Ray Hill

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I believe that Firmagon is the better choice. I couldn't tolerate Lupron due to the side effects. I was on Firmagon with Zometa,and Ketoconzole with hydrocortizon for 4 years when I developed osteoporosis necrosis of the jaw. Other side effects include breast enlargement, weight gain, lack of energy and fatigue. Is it worth It? With stage 4, Gleason 9 it has kept me alive for 7 years.

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I've read about necrosis of the jaw being associated with zometa. That is one thing that I would refuse.

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Hi Oscar,

I have been on Lupron since 2009 and found that the hot flashes disappeared for me when I changed to monthly injections. The timed release injections just didn't work evenly for me. Casodex quit working after a couple of years so I switched to Nilutamide and my PSA dropped back to <0.006. I also take avodart (Dutasteride) and Cabergoline (Dostinex) every other day. A great reference about PCa is: theprostateadvocate.com/obs...

Best of luck, Clint

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Lupron ain't so bad, once you get past the weight increase, the hot flashes, the boobs, the brain fog, the weakness, the...The point being, it's tough at first, but things will get better. Or is it that I just got used to them and don't allow them to bother me. Either way, after 7 1/2 years on it, it is what it is. And I'm just fine with that. Think Positive, smile, laugh a little.

Joe

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I'd ask around about a treatment to prevent gynecomastia (breast enlargement). I've heard that a little radiation treatment of the breast area could head it off. My urologist scoffed at this and now I am the proud owner of a couple of boobies. An ounce of prevention? But the lupron / eligard treatment really knocks down the T / PSA / cancer and I didn't have too much of a problem with hot flashes. Bedroom ceiling fan highly recommended.

Searched on 'preventing gynecomastia' and turned up nothing. Then I searched on 'radiation to prevent gynecomastia' and turned up this:

ncbi.nlm.nih.gov/pmc/articl...

I knew I had seen that somewhere. Too late for most of us. I think maybe I will create a new thread on this topic in hopes of helping new patients about to start lupron/eligard ADT treatment.

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Lupton 13 yrs, no problem. Now castrate resistant and on Lupton and Xtandi. Psa drop to .o4 from 39 . Praise the LORD DUING FINE RIGT NOW.

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welcome to the group, I think it is good to hear from other guys like me,

most of if not all of us are doing standard treatments, these treatments are nothing new

our cancer feeds on testosterone and sugar and who knows what else, so we need to block testosterone with Lupron, etc,, I am on Lupron now, and I have had casodex,, zytiga and all the rest, its all standard treatment that's all insurance will pay for is standard treatment.

I am currently on my 13th round of chemo, now that is a bitch, but for one more sunrise and sunset I will do what ever I have to do, and the onc docs are supposed to know, that's all we have

fight fight fight!

jack

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I have had no problem with LUPRON - been on it for 5 years - 22.5 mg injection every 3 months......put on some weight, a few hot flashes, but tolerable......my testosterone has been about zero for 4 years......as you folks may know, prostate cancer worsens if your testosterone is high.....

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Hi Oscar,

Sorry to hear about your diagnosis, esp. after a fight with pancreatic cancer. Note that I am a caregiver and a woman, but I feel like Not sure what is causing your "poor quality of life," and that might be significant about Lupron. It is chemical castration (but the Casodex is doing that too). It's not without side effects but it depends how hard you want to go after the disease.

My husband was diagnosed at age 51 with Stage IV, distant bone mets, so a pretty "hot" situation. We hit it with everything we could. That was over 3 years ago, and he's had pretty good overall quality of life. He does have hot flashes but they are manageable. He has a lot of interesting conversations with our female 50-something friends!

Also note that you can go off a treatment, so consider trying it? Lupron comes in 30-day and 90-day doses, so maybe start with the 30-day shot? Combined with that is also Zometa or Xgeva to help keep your bone strength. There is also something you want to check with the dentist before you start Lupron. Your oncologist should require a clearance from your dentist. My husband had a terrible time with Zometa, so he went to Xgeva (thank goodness we got that through insurance too).

Of course you don't want to stall for a long time but it is OK to take a little time to process everything. See if there is an UsToo group or two near you. Our experience was that the UsToo group here did not have a lot of people in this late stage BUT I have heard that some UsToo groups do have people with advanced disease. This forum is also great. People are honest, and you will get some varied responses.

As others have noted, you can also consider the CHAARTED protocol of early docetaxel/chemo for initial Stage IV disease. Again, take your time to look into it. In my husband's case, we didn't see great initial results but in hindsight, we think the docetaxel therapy helped. The theory behind it is that the chemo will go after the abhorrent (extra-bad) cancer cells early and prevent them from proliferating, or slow them down significantly. Maybe take it one treatment addition at a time.

Wishing you the best as you deal with these very difficult decisions.

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