I need some advice. Diagnosed almost 2 years ago. Found my cancer had spread to lymph but not bone. I had radical prostatectomy, and was put on casodex. Psa climbed so did radiation. Still climbed up to 1.6 from .4. Put on lupron and had two 3- month injections so far and jumped to 4.6. Now I’m given a choice of standard of care where they add one med to lupron either zytiga,xtandi, or apollodimide, - please excuse spelling. Or a trial called Dynamo where they hit me with two of those drugs and follow with immunotherapy or chemotherapy. My dr favors trial. I’m not so sure. I’m 61 years old, working, and feel great. I’m worried about side effects but of course I want best result. Any advice appreciated from the warriors!
-scott
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spm58
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Now that apalutamide has been approved, all of the therapies in the DYNAMO trial have been approved for some indication or other. This means that there is a lot of information on potential side effects of each. Look at the "adverse reactions" section of each of these:
Thanks for the info TA. The DYNAMO trial seemed like a desirable trial for me. The first thing I look at is the exclusion criteria. Listed is ventricular tachycardia and uncontrolled BP. Apalutamide has been very generous with side effects. I have hard to control BP and Ectopic Atrial Tachycardia from it. I am afraid that I will be excluded from almost all trials with my heart condition unless I stop Apalutamide hoping side effects diminish or go away.
I'd agree with having "eyes wide open" when considering a trial with the possibility of various drugs in combination. Previous studies in advanced prostate cancer using ipilumumab showed considerable adverse events, including a low percentage of deaths. Chemo with carboplatin can reportedly be "rough", too. I second the suggestion from Tall_Allen to explore the "adverse events" portions of all the Full Prescribing Information documents for the drugs in the Trial.
Although there is fear . I’d follow your doctor. Go Dynamo ..
I did a trial and glad I did. Some perks are that you will always be thou roughly test while on the test also the meds are free.. good luck .. you will do what’s right for you. No looking back. I’m also Scott
I’m now 57 . Started on tak-700 adt trial 2015 . The trial went belly up . But I’ve had success until now with it. Trials do offer hope and will help someone always. some fine fellows here have seen it all. Not many questions going unanswered . Beyond that make your own choices .. sometimes you’ve just got to throw some spaghetti to wall to see what sticks.. get answers and do your best . That really is all any of us can do . Good luck
Meds are free for some people during the trial, but only during the trial. If, for example, you are on a trial where you get $12,000 a month drugs free for three months during the trial, but have to stay on them for another 21 months, you need another quarter of a million dollars or you will die, and you can't go back to where you were before the trial and the drugs, you have to keep taking them, and your insurance might not cover it..
Disclaimer: I am currently in dispute over a $6,000 bill from one of those trials (glad I did it and I may in the end have to pay it all, we'll see). They also recommended I do the $1/4M thing without telling me that's what it involved, they just told me I get the drugs for free for a while, not that I'd be personally on the hook for a quarter mil, but I balked, or rather, I went along with it and to my relief ended up in the control group where I would get just radiation with no good drugs, worse than what I'd get outside of the trial. So, I balked.
Be careful folks. Nobody is your friend except for you. NEVER forget that. They simply don't care, or at least, not about you. It's ALL up to you. No one can or will do it for you.
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Amen brother. I agree wholeheartedly. I look at my test and it goes for two more years . Then what? It’s a S O B .. of a way to look at the future. Carpe Diem
I was in a similar position, quickly rising PSA. I had no sign of Mets. I was placed on Lupron. My PSA kept increasing. My PSA rose to 13.4 (it was higher 13 years earlier). I was placed on apalutamide/Erleada along with the Lupron and Xgeva for the bones. Within 2.5 weeks, my PSA fell 8.0 points to 4.4. I got my PSA again, 6 weeks after starting and it's 2.8! I have had side effects, but the proof is in the PSA! Feel free to ask anything if I can be of assistance.
After my dx 3-15 I first saw another pc cite before HU. The guy was panicking over the years with a up and down PSA. I said to myself “‘self , you’re not going to go crazy over the dam PSA for the rest of your life.“ by whatever miracle I went from a dark near fatal start to clear...after first 3months until now. definition of a lucky CS. I admit , I will freak when my PSA jumps . I might jump from the nearest bridge.. who knows..? I hope and pray that I can be that 2% dude that goes decades. “ In reality If I get anytime to be with my sweetheart it’s a win for me. It’s hell for partners too. I don’t know how they do it? Find a way to turn pc on its back again . It’s a beast......but, you don’t need me to tell you that.. but so is a strong will to live ... as long as we receive love here on earth , why want to go anywhere else..? Take care
Hey LuLu I enjoy your posts and I agree. I definitely want to go somewhere else(heaven) but not anytime soon!positive attitude makes the road for yourself and everyone else soo much better.
Would help to know Gleason score as this could be an indicator on PSA rxpectations.
Why go for a trial over standard treatment options at this point.
Personally I would deal with lymph node problem and then monitor for bone mets (thats how its hit me).
I had chemo for lymph node and initial PCa and it was great success (Gleason 9), no bone mets and possible complete success. However within 9 months had a spine compression and disease progression to spine bone mets.
Guess thats what a Gleason 9 gives you. No lymph issues for 3.5 years since though.
My Gleason ranged fro 7-9, but spread to lymph . I too am leaning toward standard care at this time. When you say chemo do you mean full blown chemo like throwing up etc or like what I’ve been on - lupron
people only mention a gleason score if no treatment . once treatment no one gives a shit about it because its ancient history. cancer and treatment works differently on everyone differently. so these suggestion is just a example what works on them if it did so. most docs first will start out with surgery/or not. once the psa starts to climb then meds,lupron and it goes from there. go with the standard treatment there is no cure no matter how long u have been battling this disease. at some point u will either die from this disease or get old enough then die from other health related problems not cancer. i'm on my 11th year and happy with a psa of 37
your at .4 so why are u worried do nothing until u go above the normal male who has cancer 4.0 then do something. teating it early won't cure u so save the meds until u need them. relax
yes and with radiation same its called rebound effect. i was clean for years with radiation. then 11 years later its gone up or down. oh u could get your balls removed but u will find down the road the psa will come back up. if u have the $$$ to travel over seas and get the lu-177 costly and not sure if that will work for some time then your back to the old grind again.
Here I go with my usual spiel: Where are you located? Where are you being Treated? Doctor(s) Names (s)... Info is voluntary. This info helps us help you and helps us. Don't respond to me just put it out there in a post in the future.
i'm on my 11 year. back then they didn't do trials even this early. usually they wait until nothing is working anymore. just changed to a urologist instead of my stupid oncologist at cancer nw in my area. the new doc is going to try different meds and get my psa to 0. which it was after the first treatment with radiation. then we went thru other meds, such as lupron,zytiga and preg, finally PROVENGE. psa is hanging at 37 which isn't to bad for me in thinking especially going on 11 years. if we go to trials then it means i'm running out of options and thats fine with me. remember as we age we will die from something else, such as heart.respiratory u name it and usually cancer is the least to worry about if not dx with it. go for it but personality i would leave trial options the last. when u go thru the drugs to early there might not be alot of options available down the road.
I’m leaning toward another drug on top of lupron. So far none of them have been effective. Does anyone know about apolomide ( probably way off on spelling) supposedly a new one.
I don’t know about combos too much but others will get you that info. Throw the dam kitchen sink at Pc if you have to. I did tak-700 with Lupron . That knocked mine down good so far. This is a heavyweight fight..
After a fairly high PSA (12) following RP , I have done very well with firmagom, eligard (Lupron) and now xtandi added in. The combo of lupron and xtandi has my PSA almost undetectable now, and I am like you with lymph node involvement, but no visible bone mets.
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