Diagnosis 2016 rad pros. Rad 37 sessions. Zytiga last 17 mos. Based on bone scans and cat scan completed last week. My oncologist stated I am so sorry to tell you have a bone met on L3 vert. She will push for a pet scan which was previously denied to determine other possible sites with Mets, my PSA has soared from undetectable to 2.8 in 4.5 months. A meeting is set with rad oncologist, and a needle to vert, as well as liquid biopsy to check for tumors . The oncologist suggested clinical trials and continued lupron and xtandi to replace zytiga which has failed. It was eye opening and extremely disappointing to hear this news considering I had hoped to delay with zytiga for a while longer. Am I on the right course. Is there something or anything else suggested by the group. And should I anticipate pain in the as a result of the met on L3. THANKS TO ALL
RIK
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Costarica1961
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So see if this is just one bone met or if others are happening. and growing in other areas. By scans of any areas where you have had bone Mets in past.
Some options I would consider.
Hit L3 met hard with SBRT.
Switch from Zytiga prednisone to Zytiga dexamethasone.
If PSA still climbing try Xtandi but note data shows only works in 20 to 30% of people after being on Zytiga but hey if works you can get say 6 months or more of working!
Look into Lu 177 or combo with Ac225 in Germany Australia South Africa. This is a $10k treatment out of pocket and May need at least 3 treatments.
Have you had docetaxel chemo. Personally I’m not a fan but I’m sure a lot of people on this site are fans.
Note that PSA 2.5 is still low in terms of PSA so people often look at doubling time. At 2.5 I feel you still have a small amount of time to see and discuss what is best course of action.
Note I’m on Zytiga dexamethasone and am approaching 23 months on Zytiga and am currently at basically undetectable.
Thankyou I was hoping to hear from you. Is the treatment you suggested available through most insurance. I have also read conflicting accounts on life expectancy what is your research indicate. I honestly am really emotionally crumbling with sadness and fear even though I anticipated this someday. I guess not this soon it's become real ugly and really real. Thankyou tall Allen
Please ignore all this stuff about life expectancy. “The only guy who knows isn’t telling.”
We Can’t give in to pc... I’m also born in 61.. this tuff mf is needing some more ass kicking ... move to the next stage and knock it back to the dark ages .....sorry for the CR but you can’t stop now . I’m no expert . Others can give you that . I’m pulling for you in whatever treatment that you decide what’s needed to slow the beast and get it off your ass. That L-3might be able to be zapped by RT... Hang in there .. 🙏
I read your post and you have reason for concern...PSA gone from undetectable to 2.8...hard to tell PSA doubling time without knowing their number for undetectable...some start at < 0.1....at Cleveland Clinic it is defined as < 0.03....
The concern is they are now detectable and have a spinal met at L3...
I would request a Gallium 68 PSMA PET/CT scan in order to determine where all the tumors were, and if I couldn't get that scans, then I would get an Axumin PET/CT scan...the other scan is better but at PSA of 2.8, you have about an 88% chance of finding all the tumors with the less precise axumin scan...
After getting the scan, you will have a clearer vision of the status of their disease progression...
I would then want to get stereotactic radiation to the spinal met at L3 to eliminate the tumor, prevent a future compression fracture,and kill the zytiga resistant tumor cells.....I would also have left you on Zytiga and changed the steroid from prednisone to dexamethasone with the idea of squeezing more time out of zytiga before moving on to another drug (see below)... if already switched then too late for that idea...
Thankyou don you're right I have had some great suggestions. And I passed on to both oncologists working with me. Yesterday another PSA done and went to 3.9 in a month from 2.1 very concerned. Their next treatment plan SBRT ON Wednesday then liquid biopsy while switching to xtandi. I will suggest the other things you mentioned and tell Allen etc although the well respected dr Bergen out of OHSU poo pooed dexamethasone with zytiga. Or provenge and or docetaxel xofigo. Will know more next week on why. Yes I am quite anxious and concernedon the rapid Mets and PSA increase.
Print off the practice update that I put in my reply and forward it to him or email it to him.....Right now, I believe one should squeeze the maximum time out of drugs and the switch to dexamethasone may buy you several months or more... .As new drugs get approved, especially add-ons to our current therapies, then more options will be available to us....
Some information on the liquid biopsy for somatic mutations:
I have done both germline and somatic testing. Germline is valuable for indicating DNA mutations, which can indicate a reason for your prostate cancer as well as your potential for other cancers... Germline testing is also valuable for any children who might have received a genetic mutation-early warning. . Finally, the germline test may provide another mutation that can be targeted...
Your PSADT is essentially 4 weeks... The SBRT to your L3 met may temporarily drive your PSA higher due to tumor cell death and release of PSA... it should drop down later and buy you more time... The benefits of SBRT were proven in the ORIOLE trial and the concept of the "abscopal effect".. see below:
One other thought, I would talk with your MO about doing the SBRT and then the Provenge as Tall Allen suggested... the reason is that WBC's are already "activated" after doing the SBRT from cleaning up the dead and damaged cancer cells. By having Provenge afterwards , you may be taking WBC's that are already targeted for your particular cancer cells and then multiplying them by a huge number and putting them into the fight... Some info on Provenge:
Thankyou. I have to admit my head is spinning a bit. My oncologists seems to be determined to go with xtandi despite my suggestions other wise . I dont have a problem speaking up and asserting myself especially when my lifes on the line. How much say or control do I have with these docs. Can I dictate my treatment plan entirely . They say step one will be SBRT xtandi, liquid biopsy, gene test. I know my insurance is also a consideration as well. Any advise.
Sure, tell your MD that there is a benefit to stretching out Zytiga to the maximum before switching to another drug....it gains time... so how much damage can be done with changing prednisone to dexamethasone and watching?? If you do a PSA every 2 weeks for a month to see the trend--not much ... Can you dictate your treatment plan?? It is your treatment plan and you do have a say...ask for an explanation which is what any patient can expect before doing a treatment...
Not sure why they are not doing liquid biopsy and gene testing first--
Rationale: Provides gene mutations that may be targeted before changing drugs--some mutations like AR-V7 practically guarantee that Xtandi will not work for long when Zytiga fails.... It also may show a mutation that can be attacked by a drug in clinical trials which is a logical approach that is called Targeted Therapy...
The SBRT should provide some real benefit by killing resistant PCa cells--the tumor, and activating the immune system... BE AWARE--insurances try and deny SBRT treatment for oligometastatic patients since it is new and my RO had to write an appeal which we won...
Best of luck getting Dr Bergen to consider a change to the plan, as well as getting the SBRT... as a patient, you do have rights...see below: the right to take part in treatment decisions...
Final thought before this evil djinn disappears,....You may wish to get a second opinion and I am sure Tall Allen could direct you better for finding someone locally if you do not wish to fly...If flying is an option, I would suggest Dr Maha Hussain at Northwestern, Dr Kwon at Mayo, and Dr. Oliver Sartour at Tulane... these are the best at prostate cancer and do a lot of research... they specialize in urological cancer...
Please write down or print anything I gave you of interest because I am not sure what happens when I "unfollow" this forum... it may disappear like me... I showed up because one of my followers felt I may be able to give you a few more options--so thank marnieg46 from Oz...
Thankyou for your insight and wisdom. I have summarized and E mailed both oncologists, one doc is my 2nd opinion and one my primary. I sometimes get the impression several of you on this forum are more up date on the latest treatments, more so than the docs. That's a bit concerning. I think they have their traditional approach and are tied to the pharmaceuticals and insurance companies on what can or cant get approved. Its frustrating to there are layers of politics to wade through to get the most effective treatment regardless of all the other B.S. THANKS AGAIN RIK
You're welcome.. I hope your second opinion is a prostate cancer specialist... I follow the treatments and science as if my life depended on it... and it just might before I am through...as I always say....The Science is Coming...and it gives me.... HOPE !!!
Hey my man.... I wasn't given a choice in the matter, but I can be found at the only unmoderated prostate cancer forum-- Fight Prostate Cancer --where I have been putting out science and replying as usual... I hope things are going better for you, brother... Fight on !!!
Take care, my friend...see you at the FPC... You are most welcome... hang tough....The Science is Coming.... and I will wait a bit and be gone...I am not sure what happens when I "unfollow"....I think "hidden" becomes my name on replies.... it sounds down right subversive....like me...
Message me and I can explain if you have questions... gusgold started calling me Fish... He has kinda disappeared... hope he is ok... This disease is hell... one day people post and a few weeks later...gone...we are all of an age so death happens, but some are young... at 61, I have accepted I am on limited time... just want to push that limit like everyone else... LOL...
Take care, my man... see you on the FPC... some of us over there are like broken toys... no longer wanted.... my buddy cujoe is there and LuLu... we just refuse to quit... I just posted 4 new science developments over the last 3 weeks... good stuff...
Till we meet on the other forum... Fortis Fortuna Adiuvat
Thanks, my man... Look forward to hearing from you as always... Hang tough... I know you have struggled quite a bit... You're a good guy and it is hard to see brothers struggle... This disease is a hell ship and we all need to get off of it and soon...
The problem with immunotherapy drugs like Keytruda is that they seem specific to certain genetic mutations--there are investigations into why they are so specific and what can be done to increase their efficacy... A company called Kitov Pharmaceuticals has a drug in development-- NT-219 for increasing the efficacy of immunotherapeutic drugs like Keytrude... Once they do your genetic testing, you will have a better idea if this is a study that has potential for you...
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