Worrying about first hormone effectiveness lupron for advanced metastases to bone

HI,

My name is Steve and I live in Florida

My friend Todd S urged me to post and describe my situation. I am 59, and newly diagnosed with advanced prostate cancer, lymph node involvement, psa 305, 10/12 on biopsy, and already lesions on the bone. I am on lupron and casodex for 5 weeks, and just wonder, and hope it is working. (Gleason 8)

My doctor seems to think that down the road I may need docetaxel. I am visibly worried and this has consumed my time worrying. I guess that is part of this existence. I want to live...I really do, and I am interested in any one that reads this commenting on their experience with pcA and if they are taking chemo and just how you are coping with this.

Hello Boynton and welcome to the forum...First of all the battle you have just begun is not hopeless..Many men in the same situation have brought the monster under control and kept him there for a good many years...In cases like yours, the number one rule is hit it as hard as you can with everything that's available to you...A recent study, the Chaarted Study, has demonstrated that starting chemo early can significantly improve your prognosis so I would put that on your "A" list of possible treatments..A new radiation treatment called Xofigo can target and control bone mets....There are many more tools in the tool-bag then there was just a few years ago..If you have not already consulted with a Medical Oncologist and a Radiation Oncologist, you should make appointments to see those specialists....

Over the next 60 days, your PSA should drop rapidly and end up at a very low number...The faster the drop and the lower the number the better....This time period will give you a couple of months to map out a treatment plan..You might also wish to read Dr. Pat Walsh's book, "Surviving Prostate Cancer" which will give you the background you will need for the journey that lies ahead..Best Of Luck To You.....

Hello Steve,

We're a collective BAND OF BROTHERS ... we welcome you ... you're going to find tremendous support, encouragement, moral support, and HOPE right here.

We have members from all "corners of the country" and our collective goal is to support one another ... and we have valued members from all across the globe, as well ... Europe, Africa, Australia, Asia, and so forth.

We truly support each other through thick and thin ... through valleys and peaks ... through storms and successes. You've discovered an amazing forum here ... tremendous outreach from our members ... 'round the clock, 365 days a year ... the members are HERE FOR YOU, Steve !

You can go back through the archived threads from the past and see the wealth of information, advice, and most of all ... first-hand treatment experiences from our members. That's invaluable when you're just getting started ...

More than anything else --- we are BATTLE BROTHERS --- and we have a bond of friendship --- characterized by comraderie. We're all comrades here --- we're in the battle TOGETHER --- you just became our newest recruit and you're going to find assurance from your fellow "soldiers and veterans" standing right beside you now. The most important thing by finding this forum, and you might already feel this sentiment by now: YOU ARE NOT ALONE IN THIS FIGHT ! It's amazing what some support can do for a person's morale, just when you need it the most ... you just found it ... brotherhood ... friendship ... expertise ... a listening ear ... solace ... SUPPORT !

I was diagnosed with advanced prostate cancer, as my signature below reveals. I'm a school teacher and a new school year had just begun ... with the sudden, unexpected diagnosis of advanced prostate cancer when I was still in my 40s ... sobering news, to be sure. That's right where you are at this juncture, Steve ... it's an emotional whirlwind ... the test results ... the anxiety ... the appointments ... the scans ... the worrying .... the lab work ... the endless waiting ... the sleepless nights. We know these things, because we've all been there. Stick with us ... we're here for you, Steve.

Let me share some hope with you today ... that's what you need right now, isn't it ? I got started on my treatments right away ... the LUPRON shots, which you mentioned in your post. I had no idea if a single shot could begin to help me fight back against what I now call "The Crouching Tiger, Hidden Dragon" --- to borrow from the movie title of the same name. Upon diagnosis, my prostate cancer had already spread into both of my lungs and my PSA was over 100 when I got started on this medical journey. I knew I had to get involved in this battle and give it EVERYTHING I had ... physically and emotionally.

Can I share a hopeful first-hand experience with you? That first month, after my first LUPRON injection, my PSA plummeted from 138 all the way down to SINGLE DIGITS ! I went out and celebrated that night, as soon as I left the doctor's office. The second month ... my PSA plunged down into decimals. I'll never forget that day, hearing those results in my doctor's office and him saying these words to me: "You are having a TREMENDOUS initial response to the ADT shots."

Since then, I then pursued a series of CHEMO TREATMENTS, which have now become an upfront "plan of attack" for many fellows with certain forms of advanced prostate cancer. The chemo treatments knocked my PSA down even lower, as my ADT hormone shots continued to do their important work during the chemo treatments. Chemo treatments ARE something you should discuss with your doctor ... if chemo treatments are recommended, there are quite a few of us here who can give you very informative tips on what to expect during chemo treatments.

For my case, I realized I needed a SECOND weapon to attack my cancer --- the ADT shots, such as LUPRON, can only attack hormone sensitive cancer cells. My oncologist advised me that I needed a SECOND weapon to attack the stubborn, resistant prostate cancer cells. Adding chemotherapy treatments is akin to loading up a DOUBLE-BARRELED shotgun, to attack your cancer in an additional way ... an IMPORTANT topic of conversation with your doctor at your very next appointment, to be sure !

Make CERTAIN you have a top-notch medical ONCOLOGIST on your medical team. Oncologists can give you expert advice on possibilities like chemotherapy treatments. As time has gone by, I have also added an expert UROLOGY ONCOLOGIST to my team --- you will find them at larger medical facilities around the country. They are experts in advanced prostate cancer cases, which is what both of us have, based on your post. I always say that ALL of us deserve the BEST doctors we can find --- so, seek out top-notch doctors for your case.

More recently, my oncologist placed me on one of the newer breakthrough medications known as ZYTIGA. Other fellows here are on XTANDI ... and others have benefited from another breakthrough treatment known as XOFIGO, which is used for bone involvement. The most important point of all of this ... there ARE new breakthrough medications which are helping MANY of us here with advanced cases.

Make sure you stay in touch with your family, friends, and faith ... in whatever form that takes for you. You need support as you begin to pursue treatments. Some brotherly advice, Steve --- stay active --- keep interested in your usual hobbies and activities --- get together with your friends and family --- exercise --- keep facing forward --- and keep living life each day.

Many of us here have faced some daunting news at the time of diagnosis --- honestly, there are hundreds of fellows checking in here who are leading full lives --- long-term survivors ! They are actively pursuing their full-time careers --- traveling --- exercising --- setting new goals --- reaching new milestones --- and living LIFE to the fullest.

Words of advice to share with you ... I always say to my fellow BATTLE BROTHERS: "Cancer is now a CHAPTER in our lives ... but don't EVER let it become the title of your BOOK OF LIFE." I hope you find some HOPE and WISDOM in those words ... I needed to hear those words when I was first diagnosed, so I hope those words are helpful to you ...

Form a tight, connected bond with your doctors ... they are going to become essential to you, as you become educated about your diagnosis ... and then put together a proactive TREATMENT PLAN .... as I said above, that first LUPRON shot had a MIGHTY IMPACT on my PSA ... getting that lowered PSA score after the first month was a tremendous SOURCE OF HOPE ... and gave me the courage and fortitude I needed to keep forging ahead with additional treatments.

I can honestly say that while there have been occasional setbacks ... and we've all had them ... I have had VERY MEANINGFUL SUCCESSES from my treatments. I think that's VERY important to share with you right now ... I teach full-time ... I exercise every day ... I am busy with volunteer projects ... I have lots of energy ... I stay up late ... and I have a full social life, filled with family and friends.

I give THANKS every day for the doctors that I have ... the tremendous outpouring of support that I have received from my family, friends, teaching colleagues, community members ... and my ELEMENTARY SCHOOL STUDENTS that I teach ! I'm grateful to all of them ... and I try to "pay it forward" by reaching out to others in my community who are now facing a cancer diagnosis ...

Let us know how you are doing ... let us know what treatment plan emerges, as you continue to consult with your doctors ... there's a wealth of first-hand knowledge and expertise waiting here for you, for any treatments you follow, going forward. Keep us informed ... keep posting ... keep checking in with us ... we'll leave the front porch light on for you, Steve ...

This BAND OF BROTHERS ... you just discovered a tremendous network of support right here, Steve !

Handshake of support, from across the miles,

"CYCLONE FAN" ~ Iowa State University

Hi Steve
I am glad Todd S got you to post. This is where you need to be.
As has been stated, treatment of newly diagnosed met pca has been revolutionized in past year where ht and chemo are given early. So yeah you should expect chemo soon. But you may be a candidate for Nih clinical trials that give access to mess not yet on market. I am working from phone cause I am in Bethesda for therapy and will be brief. If my chemo had been started I could not be in the trial I am in. Click on my username to find thread called fangorn forest. My story and trial details. Be calm, it is worse at the start than on the middle.

Rf

I want to thank everyone that has been contacting me, and the impact is really helping me decide a critical time for me as I know the effectiveness of early action, and the fact I have advanced prostate cancer.

I want to say that I have read many of the accounts on here and all of you guys and women deserve the right to beat this horrible disease. It affects everyone, and I know that each of you want to be rid of it. Demon be gone!

I am certainly going to follow your example, because each of you is a hero, and join the band of brothers to fight this disease, and you all have given me a good example and are all paragons of courage.

We all are human and have to live with this thing, and it certainly helps to know that other people want to give good advice, and believe me, I want to bury the cancer and not me, so I will be doing the chemo as although it is a rough road, each of you have told me that 'you wouldn't be here today' if you hadn't have been brave.

I think of all of our families and what it has done or is doing to them, and I think of how brave you all are to share with me your most intimate fears, and believe me I have all of them, especially late at night.

Each of you have helped me cope, and implanted some hope and courage in my soul.

It may not seem like much, it is not a championship in sports, etc, etc. However, you are all super stars and I my wish is that you all are cured.

Hi Steve, just adding my welcome to HW, I am sorry you had to join this club. Do your research, ask your questions, decide on your options. Good luck to you. -JR