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Advanced Prostate Cancer
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My oncologist said it's a bad ass cancer that trying to kick my ass

Well it's baaaccckkkk!!!! If posted awhile ago my condition, I have Gleason 9 aggressive prostate cancer, had my surgery Nov 7th 2017 remoived entire prostate and 28 lymph nodes in the pelvic area , and after 2 months my psa was 1.4 in a month it rose to 6.4 , I had a CT feb 14 2018 and it showed the cancer came back and aggressive it move up into the lymph nodes and other nodes have grown in the prostate bed after another biopsy it proved 3 of the nodes are cancerous so the next step he recommended is to start on XTANDI has any had this treament and what have you experienced

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If all the detected cancer is in the pelvic area, I don't understand why you never had salvage radiation. That's the logical next step. You have to talk to a radiation oncologist - not a urologist - about this. (I'm amazed at how little most urologists know about radiation).

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I second your motion. In 2002, my "stage" was T3a (surgery done at Mayo Clinic), and the oncologist where I lived never pushed that option. Now, research proves I should have had radiation then, not now, for a better chance at survival (I "failed" in December, and am on number 35 of 40 treatments)

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Radiation was given as an option. But wanted the urine incontinence to improve before beginning rad. Every thing was put on hold including chemo in Dec due to a fractured leg . Now they want to start on XTANDI since the biopsy came back positive and the psa is rising from 1.4 to 6.2

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It is certainly a good idea to let the incontinence heal as much as possible before beginning radiation. Is your PSA rising while on Lupron? If not, you can have Lupron in the meantime to keep your cancer from spreading while you wait. The results of the radiation will be improved by starting Lupron at least 2 months before SRT begins. Perhaps adding Xtandi may further enhance the radiation's effectiveness - I can't say for sure, but it seems reasonable.

Chemo has not been shown to be effective when there are no distant mets. It may further enhance the effectiveness of SR, but if so, only marginally, and not worth the extra toxicity.

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Thank you yes it is rising as soon as I got home from the hospital they called with the new blood test spa is now 14.1 it's rising damn fast in a month

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And I am on Lupton as well 45mg every 6months

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Radiation was given as an option. But wanted the urine incontinence to improve before beginning rad. Every thing was put on hold including chemo in Dec due to a fractured leg . Now they want to start on XTANDI and possibly radiation since the biopsy came back positive and the psa is rising from 1.4 to 6.2.

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Sure would like to know what your Doctor Considers a Bad Ass Cancer. What does he know that you do not? Do you know your Pathology Descriptions---I have BAD Ass---Ductal Cribriform---0.4% of all Prostate Cancers with an OS of 18 months. What is yours? Did they find any Neuroendrocrine--usually defined--> as widely undifferentiated. Just curious?

Nalakrats

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I'm not sure I Don't know of any of that but I will definitely ask thank you

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Nal,

forget bad ass cancer....when your time is close call me and I will set up a wrestling match with Gustave the killer croc...so far has killed 300 men...you might as well go out is style

Gus

i.pinimg.com/originals/c3/2...

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I would bite out his throat gullet--and let him bleed to death---Cover him in BIRM, and light him up. Ashes to Ashes---Dust to Dust---I win!!!!!!!!!!!!

Nalakrats

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radiation will not work...you had an RP+28 nodes and PSA back to 1.4 in 2 months and 6.4 in ! month later...quadruple doubling in 1 month...you need systemic treatment....xtandi is a good choice

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Yes my oncologist said he wouldn't do chemo cuz it wouldn't help and now I'll take XANDTI 4 pills a day at 40mg each and yesterday my psa rose to 14.1 it's moving fast they say after it comes back down they will discuss radiation thank you for your reply

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Are you going onto primary ADT such as Lupron? Normally, you do that before starting on a second-line ADT such as Xtandi.

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I'm on lupron 45mg 6 month but the nodes are still growing and getting worst I have constant pain now so I'm starting the 40mg each XTANDI 4 x a day I was wonder if any one has remarks or using it

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All I can say in MotherF#####! You can beat this down. Others have. I’m not there yet but we all dread a freakin return .We have to dig deep into our souls in order to battle this beast. Good luck and keep the team together ...I am pulling for you .

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Thank you lulu700 it's amazing how we humans come together many blessing to you

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God bless you in this storm ..

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Haven't been on much lately. Too damned sick after chemo. #9. On Lupron and added Xtandi at first rise in PSA at Chemo.#5. Dropped PSA right back down. Has since stabilized at 0.140 area., but I 'm giving up on Taxatore. It's trying to kill me with no noticeable improvement in PSA. Been off work for 12 days again this time and still can't function. Maybe by Tue. or Wed. I can get back in the seat.

Definitely add Xtandi as soon as possible. It really helped me and should help you. Good luck with your aggressive PC. Hard place to be in the Gleason 9/10 group, but that's just where several of us are.\

Doug

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Shooter1 , sorry youre Going thru hell right now. You will get thru it . I am praying for you to cope with this hell

In order to kill off the beast that’s on your tail . As bad as you feel, we pray that the pc feels worse and that it’s getting whacked out permanently .Hope everything’s better soon for you..

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Hope you feel so much better soon Doug! So sorry you feel so bad.

Healing hugs,

Jackie

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Thank you shooter and I pray for great health for you I'm sorry you had to go thru trail and error but I'm pulling for you thru chemo I was insanely scared of chemo and radiation but from what I'm learning it's better than the alternative .. iv taken 4 pills today of XTANDI I hope it works for me .. God bless shooter

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Rich,

Sorry to hear about your challenges. We are all pulling for you.

Do you have a medical oncologist who specializes in Prostate Cancer? If not, I’d strongly recommend you get one ASAP. And given how aggressive your cancer has been, if possible, I’d get a second opinion at a center of excellence hospital like MD Anderson, Mayo Clinic, Sloan Kettering, Johns Hopkins, etc. Their capabilities and access to clinical trials is incredibly helpful.

Also, a question asked several times in this thread is whether or not you are on Lupron. Did you already start it? If not, did your doctor recommend it? I can’t imagine your not being on it since the day of your diagnosis. (But of course I’m not a doctor ... but that’s the basic standard of care for advanced prostate cancer.)

We are all praying for you and pulling for you. Please keep us posted - we are here to help! 😊

James

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Thank you James yes I feel I have a pretty good team iv gone thru a few diff doctors I'm in calif so there are plenty of choices. So my first doc that diagnosed me he started me on 45mg lupron but it hasn't slow it down even after removing my prostate.. yes it went down to 1.4 but quickly moved up to 14.1 in a month .. so this new oncologist gave me XTANDI to hopefully slow it down to start radiation .. Thank you James for the prayers

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Well my man: your plate is full, but know you can certainly beat this with all you got physically, spiritually, mentally and immunologically. I’m new to this group having joined last week, and I gotta tell you that collectively these comrades on this sight are bowed up when it comes to knowing the ropes about all the rabbit holes we travel fighting this disease. I’m in year 5 with Pca, no surgery and radiation treatment of 45 visits to my prostate bed in 2015, which is basically all I’ve done; but of course things went south the last 12 months, and my PSA numbers today are at 224. I’m awaiting results on a bone scan to see if I have metastasis in my spine. My advise is this: Do not panic. Get a prostate specialist oncologist on board. Get a book my oncologist recommended titled: Radical Remission Surviving Cancer Against All Odds, Kelly A Turner PhD- Berkley. Yeah, she runs a tad against mainstream, but the cases in her book are inspiring and something in this book may click for you. I am a retired Chiropractor so I’ve always leaned alternative. But I’ve learned that you definitely need both camps working for YOU when your fighting this battle. As old Dr Max Gerson MD (the Gerson Methid) used to teach back in the 40’s, you must reduce the tumor load before you can conservatively eradicate the cancer fully. Ultimately your body has to beat this thing back, and I think boosting your immunity in light of all the stress of surgery, radiation, worry and fear must somehow be in your mix. If you check the book out she has some excellent ideas. I wish you the best with allopathic care and perhaps some CAM (alternative) when your body is ready in this battle, and I think it safe to say we are all behind you on this, Stan AZ

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Thank you for calm words and sharing your experience. Sound advice. I’m 2yrs behind you in My pc trip . Radical remission gave me my first initial hope that I could do more than the typical western med to improve my health. The spiritual side not often mentioned in our w.med handbooks. Good luck in Conquering this new uptick..

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Lulu: thx for the kind words. Pretty inspiring book and so glad I was led to it. I realize we each have to formulate and engage our own individual battle plan in this “every man for himself” battle against the ravages of Pca, but it’s comforting to know brothers in arms have traveled the road before us, and we’re all in this together. Best to you Stan AZ

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Hang in there good sir. I believe that it’s pretty near impossible for outsiders to comprehend the phycology of APC.It has a cruel

Mentality that strips our confidence and strength and all of our masculinity.If the meek inherit the earth , then I’m in there if it’s harder for a rich man to go to heaven, don’t have that problem Making peace with my self in all of this has been my issue .Hope the dark clouds roll

Away and that you have joy and no pain.

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why did you allow your PSA to get so high

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My wife asked me the same question. I failed to be super viligant and I was real concerned when it hit 87 and it jumped up to 224 in 6 mknths. My bad. I’m on it now but yeah, I have regrets. Stan AZ

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Don't beat yourself up about it, I'm in the same boat you are. Try to always look forward. It's hard, I know but helps keep you from getting depressed which is also a big part of this fight. Do everything you can to protect your peace of mind.

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We are all in the same boat heading for Niagra Falls !! Hold on !

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Thank you thank you thank you Stan I do very much appreciate your reply I will look for the book and good luck with your path pre surgery my PSA was 220 while on lupron then I had the surgery

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The book it great.

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Rock on with your bad self? Stroke , stroke, the beatings will continue until morale improves...

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Bad ass cancer? My attitude to my stage 4, Gleason 9s is: you wouldn't expect me to get any wimp cancer that's just going to roll over, now would you? Any cancer I get will be TOUGH! But, my friend, you are tougher! So keep a real positive attitude - you're in the company of brothers here - and ramp up your local family/friends support group. There's a lot of good knowledge here also - we're with you all the way.

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Thank you thank you steg I find hope in the tiniest places and it keeps me going on a daily

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I was dxed in 2006 with stage 4 Gleason 10 ,psa 148, widespead metastatic badass cancer, while in AK with no insurance,still walking the planet, never give in. Treatment are an order of magnitude better now than they were then. I wish you good luck, we are all here for you.

Dan

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That is key. Find a little each day..

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I have been on Xtandi since 2/16; has been very effective

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Thank you for your reply .. I hope the same for me ..

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Won’t remove my prostate, did 6 rounds of chemo then went on Xtandi,with lupron and Xgeva has kept my PSA down to .005. Hope this helps

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My testing lab won't quantify PSA below 0.1. If it is less than 0.1 it is undetectable. That is their methodology. Do I need a different lab, better testing? Being labeled undetectable tends to make me complacent.

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Sorry, that’s what my doctor says as well. Undetectable on the PSA.

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Ask for the PSA ultrasensitve test ; I use Labcorp, which goes down to <.006

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I have the same status. We can’t be complacent

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Been on Xtandi since July 2015, very effective, main SE’s are fatigue, joint aches and brain fog. I’m also on Lupron and Avodart and had my prostate radiated and chemo per CHAARTED. See profile for details.

Ed

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Ed. Beware of the Avadart. That drug masks the PSA level showing it lower than it actually is. I was on it for years ,the poof PSA was at 3 then 11 stage 4 cancer in the bones back and lymph nodes.

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I was diagnosed with stage 4 with bone and node mets. Avodart blocks the conversion of any testosterone still floating around from becoming dyhydratestosrerone which PCa loves. None of my oncos including Dr. Myers and now Sartor have a problem with it. I started taking it soon after I was diagnosed part of the triple ADT that I have been on for nearly four years.

Gonna stay the course but thanks for the heads up.

Ed

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kEEP UP THE GOOD FIGHT... Only Bad Ass I ever knew was my First Sargent (Mean M. F-er).

Good Luck and Good Health.

j-o-h-n Tuesday 03/06/2018 5:01 PM EST

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After Lupron and Casodex, Xtandi gave me my life back. I feel great on it. I had some increased anxiety but a benzo takes care of that. For me it has been a wonder drug. I have only been on it for two months but every day is a joy compared to four years of debilitating fatigue. Good luck!

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Anything that helps ! What benzo? I want some...

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Clonazepam 1mg BIB

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Than’ you!

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Clonazepam 1mg BID

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It's funny I have become very Anxious all the time I'm thinking it's stress but it's not is it .. it's related to the drugs so I asked for something to help calm me down but I take a stronger dose and it still doesn't do much for me

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Personally I don’t do well on narcotics and am avoiding anti-depressants .. in lue I’m saturarted with M.M. Oil...I’m listening to,reggae and enjoying being alive.. spirulina, chlorealla , get some good stuff, natural food s in you. You can live 30 yrs with luck and good habits.. Peace to you ..... you will go thru the gammit of emotions if you haven’t already.. you can take it.. and you can enjoy life although everything for us will be a little different than before. Cut that past thinking out also. Took me 3yrs to settle down somewhat . You can do it sooner.. Keeping peace of mind and just being happy is monumental. You can do this..

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My Gleason 9 aggressive Pca (diagnosed Nov, 2014) has at this point decided to limit its mets to the bone, so except for surgery I have no soft tissue advice. Targeted radiation did help with bone mets. I was on Xtandi and have now moved to Zytiga which for me is yielding better results. I say throw anything they’ll let you at the SOB. And meanwhile, enjoy the hell out of life.

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Thank you everyone for your reply I do very much appreciate all that is said .. That's why I love this site you all can make it all worth while and help me feel I'm on the right track and relaxes my mind .. every day is a day to be grateful we are above ground and I pray for all of you that are struggling today .. as it's been said before we are not alone we FIGHT together... have a blessed day you all I'm gonna cheat today and go get an in and out burger..

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I would to. You’ve been thru a hell of a lot. Enjoy, tomorrow is another day, thank God.

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You have a good attitude. That’s half of the battle. Keep your spirits up and the rest will follow. Take care..

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Being grateful every day and praying! You’ve got it brother. Keep up that attitude and you’ll do well. For me prayer and being grateful are the keys to remaining sane in trying times. Things will get better for you. Hope you get to a clear place. Then a deep breathe. Now you’re in the heat if it. I see a bright future for you. We ve got to,love those around us more than ever.. 😎

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Thank you lulu for the positive words that's exactly what today is about ... since everyone here has giving great advice on XTANDI my insurance won't cover it because of the cost of it and now they will only approve xytega/ and prednisone together can I get some feed back for this who use this verses XTANDI??

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Make decisions don’t doubt yourself. Be your own advocate . I’m in round one of treatments .From a layman’s point of view your drs plan is a good one.Im on state and fed Medicare.Ill we what they will do if I need a change. Have some fun in life.. or what’s the point.we’re going to go thru drudgery. That makes the good times 100x more valuable...got to go with the flow,don’t fight yourself .This is , in

My opinion time eliminate stress and live a super healthy life style to keep you immunity up ..if you have hobbies and interest that helps.

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Just talked with my doc last week and insurance companies won't cover my XTANDI but is telling instead I qualify for xytega/ prednisone together who can give me some feed back with this mixture ??

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If you have not done either zytiga or xtandi, Most people do Zytiga /prednisone first. As I recall the response to xtandi after zytiga is better than

Zytiga after xtandi. When zytiga failed for me they added xtandi to zytiga and I got nearly 3 more years.

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Insurance companies are vultures..But the world needs vultures too.

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Neither of them worked for me at all. There is a support program that gives you the XTANDI for free if you make like $65000 or less - it is on their website. I qualified, got it for free, but it did not work.

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Wow I'm sorry to hear that it seemed to have lowered my psa in 2 weeks .. do you still have the info you can give me for that cuz I definitely qualify for that

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astellaspharmasupportsoluti...

Good luck - they approved me in about 3 days. Had pills 2 days later - your Dr's office will need to fill some stuff in and write the script - but like I said had it quick, and did not cost a dime.

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Thanks for the info i was just approved for zytiga and my doc wants me to follow that for awhile to see if it does well

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Follow thru.. it will work ...

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You should have your dr. run a gene mutation test on you and see if any immunotherapy like Keytruda would work .. it is likely you have many gene mutations since your cancer seems more aggressive. PD-1 Pd-l1 Braca 1 & 2 MSI - high are just some of the gene mutations that the immuno drugs work wonders on.

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There is copay assistance for zytiga. Mine is free right now, 10 bucks occasionally.

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Thanks for this info. !

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My husband was on xtandi. However it stopped working after 6 months so Dr put him on Docetexel which is not working. So we're having molecular profiling of his removed prostate and having it analyzed by company called a CureMatch. Their national database of all FDA approved drugs will id the best treatment for Gary.

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