G10 with Mets

Just a perspective ... my husband was diagnosed G9 with a PSA of 177 in March 2012 with bone mets ... he's doing well almost 7 years later .... enjoy your cruise, you are not on your way out yet!

Lupron, Eligard, brandnames for the same basic drug. The drug should start working in a few weeks - you won't need a URO to tell when it does. Three months would be a normal follow uptime.

Dignity and medical are mutually exclusive.

The RT is an endurance test, but you'll do fine.

Enjoy your cruise and keep us updated on your progress,
Andrew

Thanks guys. I should have done a little more research before I posted my ignorance on Eligard. A quick search here would have (and ultimately did) tell me everything I needed to know.

I get that cruises aren't some folks cup of tea. Frankly, It took my wife and I 30 years to discover them. We did our first in September, renewed our vows on the ship on the ship and had such a good time, we just couldn't wait to do it again. Before this year, our typical vacation was to fly somewhere (usually the western mountains, rent a car and drive three thousand or so miles over 7 or 8 days. While I do love to drive, we have found that we come back more exhausted than when we started. Now, with my diagnosis, we just can't do that anymore. All of my docs encouraged us to go so we are off in the morning.

Have a great time on the cruise -- it's totally doable. FYI, I got my G8 diagnose (later changed to G9 by JHU 2nd opinion) the night before my wife and my flight for a six day trip to the UK for vacation. It was a nice diversion which took some compartmentalization to set aside, but we did.

Randy,
The Zytiga suggestion is actually good news. I am surprised your team didn’t consider using it right away. Adding Zytiga early is the new paradigm. Major studies have recently shown that using Zytiga earlier gives longer control of PCa.

Relax, early Zytiga is the new standard and your treatment is appropriate.

Enjoy your cruise.🙂

PS. This is a good example why your MO should be running the show, instead of your Uro.

Hello !

Adding an oncologist to your team is a tremendous, vital step ... I started with just my urologist, but adding an oncologist opened MANY new doors !

You mentioned ZYTIGA ... many of us here are on ZYTIGA. It is a relatively newer breakthrough medication, F.D.A. approved in the last decade.

I was one of my doctor's first patients to start on ZYTIGA ... he has watched over my case with care and compassion.

Not knowing what the results might be, I began saving the monthly ZYTIGA bottles, just as a way to track my progress.

I was happy when I had 3 empty bottles ... then 6 ... and then 9 empty bottles. Nine empty ZYTIGA bottles was significant ... I'm a school teacher, and started ZYTIGA at the beginning of a new school year. When I had nine empty ZYTIGA bottles lined up on a shelf, I gave thanks, knowing it had carried me through an entire SCHOOL YEAR.

Slowly, month by month, the line of empty ZYTIGA bottles has grown. I just opened a new prescription bottle this week, and there are now over 40 empty ZYTIGA bottles, all lined up on a shelf. I share this story with you, to give you hope and encouragement, which all of us need when starting a new treatment or medication.

In my case, combined with my other treatments, ZYTIGA has helped keep my PSA in the low decimals.

Many of us here on this website were among the new "wave" of fellows who started taking ZYTIGA after its F.D.A. approval. Our doctors keep track of us, discovering the true potential of this new breakthrough medication.

Remember how thankful I was when I saw 9 empty bottles of ZYTIGA lined up on my shelf? Imagine the depth of my gratitude now, seeing over 40 bottles lined up on the shelf, realizing it has now carried me through several school years ...

For first-hand insight into ZYTIGA, we have banded together here on this website to create a detailed thread for those who are starting ZYTIGA. Just go to the top of your screen, find the SEARCH BOX, and type in this thread title, as follows: ZYTIGA: OUR COLLECTIVE EXPERIENCES.

The search will immediately locate the thread ... click on it, and you will find a wealth of first-hand experiences, put together by our members here.

Wishing you all the very best,
CYCLONE ~ Iowa State University

Since zytiga costs about 10 grand a month the Docs are smart to get pre-authorization. It is part of the ADT. It works well for a lot of us. Happy anniversary and happy cruising!

Randy, IIRC, I DIDNT START HAVING SIDE EFFECTS FROM Firmagon, until about 6 weeks after my first shot. Ithpppens gradually. For now, enjoy the se free ride,

Hi Randy, best wishes on your cruse and treatment. If you haven't had genetic testing this is something you should order. This might increase your treatment options in the future. " In February 2018, the National Comprehensive Cancer Network (NCCN) updated its guidelines to recommend expanded genetic screening for prostate cancer. According to NCCN, men with prostate cancer that has spread outside the prostate gland into nearby tissue regionally and men with metastatic disease, regardless of age, should have genetic testing performed by a specialist.Your healthcare provider may refer you to a genetic counseling program so that you can make an informed decision about the value of genetic testing for your situation. If prostate cancer, breast cancer, or ovarian cancer runs in your family, consulting with a genetics specialist can help you determine your risk and management options. See article: https://prostatecancer.net/clinical/prostate-cancer-breast-cancer/

69 yrs., 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 10.5.18. PSA .012, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 93 yrs. Neurogenic bladder due to lumbar disk disease and recurrent bladder neck contracture with urinary retention man. 20 years doing catheterizations. TURP & scaring 2003, Finasteride 5 milligrams daily since 2002.

Resistance to these drugs is so rare that it shouldn't be a concern. Soon enough you will be wishing the side effects hadn't come on so soon. Eligard was developed as the generic version of Lupron, but does have a little different version of delivery.

Remember that the Leuprolide drugs like Lupron and Eligard will first boost your testosterone as the body tries to counteract the drug's action. That is why Casodex is used to offset the T flare. This takes a few weeks to settle in before the T production stops. Then a few weeks for the T to metabolize out of your body so the side effects of no T can begin. So the 6-8 weeks is normal to see the side effects. For me, my first shot was on October 6, 2010 and I didn't start having hot flashes until mid January, 2011. By the end of January my PSA was undetectable. My T was tested in March and is was single digit.

In my case I did have an unusual negative reaction to the drug (Eligard) that manifested a week after the shot, but several weeks before the normal side effects appear.

Haven't updated recently since there really wasn't much new. That seems to have changed today.

Uro put me on Eligard (6 month) Nov 19 and Zytiga/Prednisone on 12/3. Until this week, I have had no SE's at all. Probably began with some really mild hot flashes last week and they have really kicked in now. Still have no ED issues and this had me really worried that I might be castrate resistant. He also added Zytiga and Prednisone on 12/3

RO started 28 rounds of radiation (7,000 rads) on 11/27. I finish next week. I have had the usual issues from his treatment, frequent urination and some pain in the process. RO put me on Flomax which helped

Went back to the Uro last Thursday for a routine blood test. They were not going to check my T level or PSA until I absolutely insisted. I really needed to know if there had been any progress. I got those results this morning. My T came in at 45.3 which is essentially meaningless since we didn't have a pre-treatment baseline test to compare to. (Not happy about that) My PSA came in at 0.99! Not there yet but I am truly excited at the improvement. It is the best news I have had in several months, Still a ways to go but now I feel much better.

Met with my new MO this morning. Dr Reddy of Atlanta Cancer Care. Thank you JNF, my wife and I were both really impressed with him. He ordered what he called a Foundation One test of my tumors from the earlier biopsy. I'm sure others here know much more about it than I do but it is essentially a genetic test to help determine the course of my future treatment. We discussed how aggressive I wanted to be with treatment. He said we could sit back and let the current meds do their thing or add chemo, or perhaps immunotherapy, depending on the genetics testing. I told him I wanted to be as aggressive as possible and throw everything we could at it. That seemed to please him as I suspect that is his preference as well.

I told him that if the Doctors would stop telling me I'm sick, I would still have no idea. I have no pain of any kind. That continues to surprise me. Radiation ends next week. Nest appointment with MO to discuss genetics test in about 4 weeks and follow up with Uro the week after that. I am hardly out of the woods but I feel much better than I did before today

Fl Drifter said...
my brother from a different mother....we`re all in this together ....hang in there ....Peace ....David

What David said! May you join the group a couple of other brothers here belong to: diagnosis as bad as yours or even worse, and still here doing great 10 years later. May that be your group!
Bill

EDIT: I just realized this is not a new thread, and I have told you the same thing before, but it doesn't hurt to repeat the same wishes for you! And hopefully those docs will quit telling you that you are sick! What do they know, anyway?