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Advanced prostate cancer stage 4 w bone mets psa 1200 age 55

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Posted 1/21/2017 3:26 PM (GMT 0)
My husband finally diagnosed dec 2015. Casodex then taxitre now getting Lipton and xgevia shots. Psa went down to 4 then to 6 now at 30. Doc says on Thursday we will discuss another drug xtandi. I am sick with worry and can't stop crying whenever I get alone. Any advise about this drug? Side effects and if it works? Any other suggestions? Going for second opinion at Sloan Kettering. He is currently being treated at north shore hematology.
Posted 1/21/2017 3:38 PM (GMT 0)
I am sorry I am new to posting and half my thread that I typed didn't get posted. My husband was sick from July to December with hemoglobin at a 5 multiple transfusions and scopes done couldn't figure out what was wrong till December . Stage 4 prostate cancer with bone meta spine, pelvis, hip, arms, leg, skull. They said they never thought of it cause he was so young 54. Gleason 5 psa 1200. Any advise would b most appreciated. Praying each and everyday.
Posted 1/21/2017 3:40 PM (GMT 0)
Gleason score of 9 sorry typo. I am new to this an frazzled to say the least
Posted 1/21/2017 3:51 PM (GMT 0)
Hi 4myhubby,
I haven't taken Xtandi but it is an advanced form of ADT (hormone deprivation therapy) and works well for many men. I take Zytiga which is also an advanced form of ADT but from what I understand it works a little differently and is usually prescribed with prednisone. Even with advanced disease it is possible to get is under control for long periods of time but you must remain vigilent and not disregard new aches and pains. Hoping for a wonderful response for your husband. Take care.
Posted 1/21/2017 4:15 PM (GMT 0)
So sorry to read about your husband's very serious case. I hope that the staff at Sloan-Kettering will give both of you hope for the future. They are among the best.

To find out more about Xtandi, you can do a search of this site. The search box is close to the upper right hand corner. Please realize that most of the information that you will find is anecdotal, but you might find it useful anyway.
Posted 1/21/2017 4:53 PM (GMT 0)
My dear 4myhubby...worry not about how you are coming across to us...your concern is safe with us
There are tons of treatment in the line and beyond that can tame this beast...you do need to be treated at a medical enter such as Memorial Sloan kettering...you will be so happy and relieved...once you get a medical team that will not be in a position to say " we couldn't figure out because..." I can assure you MSK will figure it out and you realize what others here have said said...Your hubby can live a long and fruitfill life with the treatment and care of MSK's team...The mutual love the 2of you have created...your
hope...your faith...and your patience...you both believe this to be true in your deepest of deepest...now know it and rest in it...the mind is a powerful organ...play its harmony...know its beauty...it fills...never is empty...turn to it and lo......

Your frazzle...dazzles...your Hubby is blessed...not just words...manifestations of what IS....
Posted 1/21/2017 5:05 PM (GMT 0)
4myhubby, so sorry to hear of your husbands situation. But all is not lost.
I assume because you are being treated by NS Hematology I assume you are on Long Island? Seeing MSKCC will be. Quantum leap forward for you guys, and will give you lots of options, I'm sure. Also remember, you can work with one of the MSKCC doctors in NYC , and get treatments at one of their facilities on Long Island to make it more convenient. I'm sure you know, but just in case, they have facilities in Rockville Center and Commack.

Good luck, keep us posted, and stay calm and try to be positive, there is ALWAYS hope
Posted 1/21/2017 6:51 PM (GMT 0)
Thank you so much for answering. I REALLY appreciate any information. Wishing you all health.
Posted 1/21/2017 7:10 PM (GMT 0)
Howard Scher at Memorial Sloan Kettering is one of the best medical oncologists in the world. That was a great initial response to Taxotere. Xtandi is a good choice for a next step. There are lots of new drugs he will be able to try, and MSK is conducting many clinical trials.
Posted 1/21/2017 8:57 PM (GMT 0)
Hello 4myhubby, welcome to our forum. He does have a serious diagnosis, but there is hope. Some of the more knowledgeable people here can give you some direction, as some already have. Many here can empathize with the fear you're feeling right now.

We have a member, Todd1963, who had a PSA at diagnosis of 3200. He is still with us 10 years later, presently with an undetectable PSA. No one can predict the course of any individual case, and perhaps Todd is an exception, but in his story there is definitely hope.

I started a thread quite some time ago specifically as a gathering place for the G9 Crew, those of us facing this diagnosis. If you look through the thread, and the one linked before it, you'll find quite a lot of us here. I've added you to the list (under the 4+5 section, listed by date of diagnosis). There are links to the threads of some other G9 people there. It may not be of much comfort now, but it's at least a reference for you.

The Gleason 9 Crew -- Part 2, continued.
Posted 1/21/2017 11:17 PM (GMT 0)
Dearest 4myhubby. I can totally empathise with the fear and angst you are experiencing right now. The bottom just dropped out of my world last year when my hubby was diagnosed, and I cried every day and night for months. Your hubby's case is serious, no doubt, but as the other very knowledgeable folk (above) have indicated, there are many treatments available and excellent specialists to take great care of your man going forward.
You have come to the right place for compassionate advice, support and knowledge and I wish you both the very best with his treatments.
Sending healing thoughts, Jaybee
Posted 1/22/2017 1:43 AM (GMT 0)
I am so sorry you are here. I am so thankful that your husband has you.

This is serious and you have to be with a medical oncologist that is very good with serious situations. You have received some excellent suggestions and I can't add to that. Thankfully there are many treatments that can do a lot of good for a very long time.

Best wishes
Posted 1/22/2017 4:42 AM (GMT 0)

Dear 4MYHUBBY,

We are all here for you on the Healing Well website. You've discovered a very compassionate and caring CORNER OF THE WORLD. You've already seen, read, and experienced the outpouring of concern from other members ... this happens, each and every day, right here on the website.

I'd like to share some hope and encouragement with you. You've already gotten started on your treatments ... the LUPRON shots have worked some wonders for you already, helping to "starve and strangle" those hormone sensitive cancer cells.

From there, you have added other treatments in your treatment regimen. You and your medical team are taking a proactive approach in the attack !

I'm thankful that you are "taking it to the top" and seeking some additional expertise from an internationally renowned medical facility. All of us deserve the very best ... and seeking out additional expertise for cases with complexities is always an excellent idea.

I was diagnosed with advanced prostate cancer when I was in my 40s. My initial PSA was over 100 when I was first diagnosed ... and to add some complications to the situation, my prostate cancer had already infiltrated both my lungs by the time I was diagnosed. I had to get started on treatments IMMEDIATELY ... no time to waste !

I am a school teacher, and a new school year had just begun. I had taught school for about twenty-five years and a new school year was just beginning when I got the news of my health diagnosis.

I want to share some hope with you ... since that day, I have continued teaching full-time ... I exercise every day ... I stay active ... I pursue hobbies and volunteer work ... and I stay connected to my family, friends, and faith.

I have a personal saying, that I would like to share with you: "Cancer might be a chapter in my life story, now, but cancer is NOT the title of my BOOK OF LIFE." Words to think about, words to reflect upon ...

Despite the diagnosis you have just received, there is hope for you, just as there has been for me. When I was first diagnosed, I wondered, "Will I even live until Christmas time?" Sigh ... I've been there ... we all need ENCOURAGEMENT along the way ... that's what you will find, right here on this website.

We've got members from every corner of the country here, as well as loyal members from across the globe. Our collective purpose ? To walk alongside each other ... to support each other ... to learn about new treatments and medications ... to advise each other, when asked ... and to share first-hand experiences that will help others. We invite you to check in here often ! There's loyalty and camaraderie in abundance here on this website ... you'll see it in action, each time you visit.

Once my treatments began, I began to feel hope and encouragement ... family, friends, work colleagues, community members, and my students rallied around me ... my doctors became a lifeline and GODSEND to me ... and I began to see that my initial treatments were beginning to HELP ME.

Since then, I've had some meaningful successes with my medical treatments ... I've had many accomplishments since the day I was diagnosed, that I perhaps never imagined on that day that I heard the news of my cancer diagnosis.

Several of us have banded together lately and created a special thread for our newly diagnosed friends here on the website. I'd like to invite you to read it, and I think you will find it meaningful and inspirational. In the top right-hand corner of your screen, you will see a SEARCH BAR. Type in this thread title: LETTERS TO THE NEWLY DIAGNOSED. I think that reading through the letters will give you a sense of hope ...

I have continued to live life, to the fullest extent ... and recently celebrated my fourth Christmas, back in my hometown, with all my family members gathered together with me. Over New Year's, I had a reunion with my old college roommates from "back in the day" ... milestones ... the simple, everyday blessings of life ...

Not so long ago, I realized that I have lived to see over 1,000 sunrises and 1,000 sunsets since the day I was diagnosed. I'm still here ... I'm still facing forward ... I'm still pursuing treatments ... and I wanted to share these pieces of my story with you, in the hope that you will be encouraged, as you continue your medical treatments.

I want to wish you ongoing success, as your treatments continue. We are all in this together, and we're ALL here to support YOU !

Handshake of support, from across the miles,
"Cyclone Team Fan" ~ Iowa State University
Posted 1/22/2017 7:03 AM (GMT 0)
Welcome to the HW forum. Let me first say that your hubby is a very fortunate man to have you there 4 him through this. It will likely be a difficult journey for you both but this forum will become a very valuable resource for you as it has for me and my DH. Getting educated an knowing what are likely torrent outcomes and next steps will help alleviate the anxiety you are likely feeling right now.
Gary's stats, as you can see below, are very similar to your own hubbies dx. He has been hanging tough for more than six years now.
I am always open to emails for mutual support and shared experiences.
You can find members' email addresses beneath their "handle" in the top left corner. If the envelope is in color, their email is open.
Best wishes, and do keep us posted.
Beth
Posted 1/22/2017 12:13 PM (GMT 0)
4myhubby- welcome to the forum. Not where you want to be but "here we are". I am G9, stage 4 and have been on Xtandi since last March. It has worked for me. As for side effects, I don't see any. Since I have been on HT for 5 years, I have the normal weight gain and tiredness, but I can't say that anything changed when I started Xtandi. I was on Zytiga for 20 months prior to Xtandi, but I like Xtandi better because I can take it with food and Xtandi does NOT require prednisone.
As other posters have indicated, we have plenty of G9 guys and caregivers here too. We are here for you and hubby. Please know that.
Posted 1/23/2017 3:11 AM (GMT 0)
And be advised 4my hubby...I for one understand that some times too much is too much...you have shared your situation and responded gracefully...you should feel no pressure...to respond anymore than YOU want to...we are here when you need us...we are here for YOU...not you for US... Thank you for allowing us to be a part of your healing and Hubby's healing...He will be healed...know this....
Posted 1/23/2017 3:40 AM (GMT 0)
Dear 4MYHUBBY,

I have been a patient at MSK since the fall of 2009. I think you will probably want an initial appointment with a medical oncologist. An MO can refer you to other resources at MSK such as radiation and handle overall management of your case. The Kimmel Center for Prostate Cancer ( part of MSK on 68th St.) has about a dozen MO on staff. All very capable and experienced. I can recommend Dr. Michael Morris. He is an excellent physician and a man of science. I have been very pleased with my treatment at MSK. It also offers "one stop shopping," one reason I went there. Best wishes to both of you.

Newspaper Lover
Age 73
Gleason 8
2009 Prostate Surgery upstate NY. Failure in about 18 months.
2011 Moved management of my case to MSK.
2011-12 Radiation + Hormone Therapy
2012 -14 PSA undetectable 5 tests.
Jan 2015 PSA detectable at .08.
Jan 2016 PSA .26
Dec 2016 PSA .46
June 2016 bone and CAT scans negative.
Next PSA scheduled March 2017.
No treatment at the his time.
Posted 1/23/2017 3:41 AM (GMT 0)
Welcome 4myhubby,

I'm so sorry you have to be here! You've come to a great place for information and a family who really cares about you and others. I see others have been helpful with information and their journey.

Oct. 3, 2012, my Doctors told me I'd only live 4-5 years and my first line of defense would only last 6-18 months!! As you can tell by my profile, I'm still on my first line of defense, presently with an undetectable PSA and doing VERY WELL!

I truly believe that the reason I'm doing so well is my faith in God, prayers and my Doctors!

I'll keep you and your family in my thoughts and prayers.

Dave in Bartlett TN
Posted 1/23/2017 4:00 AM (GMT 0)
My husband is a patient (he sees a medical oncologist) at MSKCC. I believe that it is the best place to be treated for advanced prostate cancer in the NY area.
Posted 1/25/2017 9:12 PM (GMT 0)
Dear 4myhubby,

I am sorry you have to be here. My wife is in a similar situation with me. It can be agonizing in the beginning. My hope is you find peace especially since you are at a highly recommended Hospital

I was diagnosed Jan.,2013 with stage 4 gleason 9. At that time I was given 3-5 years. Well that's just not long enough for me so here I am.

Lupron failure after 5 months brought me to Taxotere. Then was put on Xtandi. Xtandi was good to me. No side affects and kept my PSA undetectable for over 15 months.

There are many promising treatments in the pipeline now. Now, the understanding of Pca is expanding more rapidly than in 2013.

Thank you for being a part of this forum and for the opportunity to share with you some of my experience.

Rick
Posted 1/26/2017 1:14 AM (GMT 0)
4myhubby
I just want to take a moment and add to what others have expressed to you. Your husband is facing a serious diagnosis. His PS a number is sky high. He has widespread metastases and I'm sure that the future looks pretty bleak for you right now. I am not a G9 I am a G7 but at the time of my diagnosis my PSA was over 3200. I too had widespread metastasis. At the time of my diagnosis The cancer had spread to my lungs my bones in my lymph nodes. That was 10 1/2 years ago. I'm telling you there is hope.
Posted 1/26/2017 3:13 AM (GMT 0)
I concur with Todd. 2 years ago I got my DX and as you can see from my signature it was bleak. I feel great now and can routinely hike 10+ miles a day and enjoy an almost normal life. Lots of hope out there so please hang in there. We are always here for you and him
Posted 1/5/2018 2:41 AM (GMT 0)
Update on hubby. Xtandi stopped working in November . Being treated now at msk in nyc . Going to be startion xofigo-(radium)and with either a parp inhibitor or platchemo. He is still feeling well . Very anxious about this next line of treatment. Anyone familiar with these treatments? Psa started rising. Dr Scher recommended psma in Germany not covered by insurance also possibly California also not covered by insurance. Anyone hhave any info? How are all you gentlemen doing? Wishing you all the best of health.
Posted 1/5/2018 3:13 AM (GMT 0)
4MyHubby: I am not knowledgeable enough to offer advice so I will just keep the two of you in my thoughts and send all of the positive energy your way that I can.

May the two of you be well and share in the blessings springing from the good I have done.

Roger
Posted 1/5/2018 4:06 AM (GMT 0)
Scher is the best of the best. There is a whole new set of radiopharmaceuticals based on PSMA coming out of Germany that are getting good results in early reports. There is one (called I-131-MIP-1095) that is currently in a clinical trial at MSK. perhaps you can ask Dr. Scher if your husband is a candidate:

/pcnrv.blogspot.com/2017/01/i-131-mip-1095-new-radiopharmaceutical.html

You can read about the radiopharmaceuticals coming out of Germany here(note additional links at the bottom):

/pcnrv.blogspot.com/2017/09/a-new-lu-177-psma-ligand-has-good.html

There is a trial of Lu-177-PSMA in Houston, but I've heard it is very expensive (around $8,000) and not covered by insurance. But you can call and check:

/clinicaltrials.gov/ct2/show/NCT03042312

Medical tourism to Germany will probably be cheaper and better, because they have more experience with it. You may want to contact:

Dr. Haberkorn at the University of Heidelberg (he speaks English):
Email: [email protected]
Phone: 06221 56-7731

The PARP inhibitors and platinum chemo works well on tumors that have certain genomic characteristics (and sometimes in patients who are born with rare genetic abnormalities). Low grade nausea is a common side effect of both platins and PARP inhibitors. They will monitor his blood work closely and the effect on his liver. For a summary of all the potential side effects known for any drug, fill in the searchbar at the following site:

/medlineplus.gov/druginfo/meds/a695017.html
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