I am considering going off Zytiga/Prednisone to determine if I am castrate resistant, and wondering if it would be a safe/prudent thing to do. My dx was Sept. 2018, stage 4 with both SV’s, pelvic lymph nodes, and pelvic bone met. Since dx, I’ve went from Lupron to Orchiectomy, had 5500cGy 20 cycles to prostate/SV’s; 2700cGy 3 cycles to bone met. I feel great except my right hip feels rubbery after exercise or significant walking. My PSA has been undetectable since January of 2019. Reason I am considering this is social security disability should be granted automatically once castrate resistant is determined. I am 60 years old and getting ssdi would be a pretty significant financial help. Oh, and my oncologist gave me a prognosis of 4 years in Sept 2018… Thanks; I really appreciate this community!
I am considering going off Zytiga/Pre... - Advanced Prostate...
I am considering going off Zytiga/Prednisone to determine if I am castrate resistant.
You should discuss stopping abi with your oncologist. Prednisone has to be tapered carefully.You could stop abi and monitor the PSA and testosterone every month. If there are 2 or more consecutive values showing a persistent increase of the PSA with a testosterone less than 50, you could restart abi and prednisone.
Intermittent abiraterone has been tried without significant negative side effects:
Marc,
Perhaps I am misunderstanding your intent here. I don't think going off the drugs would establish that you are castration resistant. If you are castration resistant, your cancer progresses, generally detectable by a PSA increase, while you are ON the drugs, not off them. If you go off the drugs and your PSA increases, that probably means that you are NOT castration resistant.
Your case is a little more complicated because you have been physically castrated (orchiectomy), so even without drugs, your PSA may stay low indicating that you are not castration resistant.
I don't know what criteria the Social Security Administration uses to determine castration resistance. Castration resistance used to mean that, if a man were castrated, or if he were taking one or more of the older drugs (Lupron, Zoladex, Eligard, Trelstar, Casodex,, etc.), he was resistant if his PSA increased in spite of that. Nowadays, men whose PSA is increasing after orchiectomy may still be able to stop the progression with the newer drugs like Zytiga, Xtandi, or darolutamide. If so, does the Social Security Admin consider them castration resistant? I don't know. I think you should find that out before you do something that could compromise your cancer treatment.
Alan
If the PSA increases with a testosterone less than 50, the cancer is castration resistant. PSA could be lowered or kept under control for a while in castration resistant cancer by adding to ADT, casodex, abi, enza etc.
I asked my oncologist and he said I would be considered castrate resistant generally when my increasing PSA went above 2.0. From what I have researched, I believe the social security admin intended to give a compassionate allowance at that point figuring the pca victim might have a few years left to live. Now though, since I am taking zytiga, my PSA will take longer to rise (presuming), but my overall survival will likely be about the same.
This is the SSA's site info on topic from a program guide:
secure.ssa.gov/poms.nsf/lnx...
"Refractory disease occurs when prostate cancer no longer responds to hormone therapy (that is, androgen-independent disease). Treatments for hormone refractory prostate cancer includeis chemotherapy, adrenal suppressants,immunotherapy drugs, and external beam radiation therapy (EBRT)."
NCBI link for refractory disease is here: ncbi.nlm.nih.gov/pubmed/753...
Zytiga would not be considered a hormone treatment, would it?
Basically I am wondering if it would be safe if I stop taking the zytiga at about 18 months from the start of hormone therapy. I'd stop taking zytiga, look for a rise in psa over a few months and let it rise to 2.0, then go back on it.
Thanks for your comments; I'd hope this discussion may especially help guys under SSA's retirement age of 65-67 that have castrate resistant prostate cancer. If you do become castrate resistant before that age, you can apply for ssdi regardless of whether you are currently receiving social security, and your benefit will increase to that of ssdi, for the rest of your life.
Have you read AKM Shamsuddin's book on "IP-6 and inositol" (Amazon)? He discusses how this blend also triggers apoptosis of androgen-independent cells (see Rajesh Agarwal's extensive prostate cancer studies at pubmed.gov). Shamsuddin is with the Univ. of MD Medical School and Dr. Agarwal is with the Univ. of Colorado - Denver School of Health Sciences. I have been using IP-6+inositol since 2015. I am still hormone sensitive after 7 fun-filled years with Lupron.
Oh, I realize now from SSA's site, that adrenal suppressants are considered hormone therapy, so if I go off zytiga, it's like I am going off hormonal treatment in SSA's view.
Dang, brain does not work like it used to... SSA describes adrenal suppressants as a treatment for hormone refractory disease...
If I understood correctly they say that hormone refractory disease is Jewett stage 2 PC.
"A prostate cancer stage defined by the Jewett staging system. ... In stage D0, the level of prostatic acid phosphatase (PAP) is high. In stage D1, the cancer has spread to local lymph nodes only. In stage D2, the cancer has spread to distant lymph nodes and to bones or internal organs."
siteman.wustl.edu/glossary/...
My interpretation is that if you have distant metastases you had Jewet stage 2 PC and you may qualify for SSDI. This interpretation is the same than the one posted by gregg57.
If you are stage 4, you qualify for SSDI regardless of whether you are castrate resistant. I think they may process it faster if you are castrate resistant because if something called "compasionate allowance". I got mine before castrate resistance. If you get shot down, get an attorney. That's my advice from experience.
Did you have a visceral spread?
No, just to the bones. Many others here have also got approval. This forum is where I found out I could do it. I had two doctors tell me I couldn't.
After one year when I learned on this forum I could get it, I applied and they approved me back to my date of diagnosis. I got a year of backpay.
What year was that, at what U.S. State? (I have heard some states are much easier)
In December of 2017 in California. I don't know why it would matter what state you live in, but you can always talk to an attorney. They get a small percentage of what they get for you up to a cap. It's reasonable and they only get paid if you get approved.
Well, I researched SSDI approvals, and you do have a much better chance in certain states. I do know about the attorneys and how they get a certain percentage if they win. I asked for a reconsideration and they denied it, and I guess I will contact an attorney. I am totally not disabled in that sense. It just really, really irks me for a government agency to deny me as I worked for the bstrds for 28 years.
No reason you should not get it in my opinion. Best to get an attorney.
Believe gregg57 has nailed it. We had a "representative" for my wife's disability. I was against it, but wife insisted. She knew I would drive myself crazy trying to work and deal with all the disability issues. I would have been hard to live with. She was right. They got a percentage set by SSA. It was paid out of the back pay. It was very reasonable. She got a nice little back pay bonus. If you do it pick the best you can. They all get paid the same. They get nothing if you get nothing. It will take a while. Good luck.
Right, they can drag it out but in the end they will just owe you more.
If your PSA is rising while on zytiga that still doesn't mean you are castrate resistant. It only means zytiga is failing and it might be time to move on to another ADT drug.
One thing that hurt me is my ECOG of 0; doctor saying I am fully functional with disease effect on my performance.....
Agree with Gregg57, bone mets should qualify you. I always get a copy of my docs notes from visits, I’ve had to request amendments when performance status was not what it should be or varied from previous performance score. By law they must make amendments. Be sure you are frank and detailed regarding SEs you are experiencing from treatments so they are in his notes. It’s ridiculous that a doctor can determine ones level of function from a 15 minute visit. I’d like them to live in my body for a day and see how they like it.
Ed
I have been castrate resident for 7 years going on 8,the name of the game is staying alive (I think the BG s saidthat) get a new oncoligist.
There are a couple of reasons to maybe stop abiraterone. One is a set of studies by Robert Gatenby and colleagues at Moffitt Cancer Center that show pretty good results (see wired.com/story/cancer-trea... and also August 2019 Scientific American scientificamerican.com/arti...
They model the cancer ecology and then try to determine the optimal time to stop and restart the abiraterone. Seems to lengthen the time to progression. There is also an academic article at ncbi.nlm.nih.gov/m/pubmed/2...
Also, I have my own theory that goes like this: if you progress while you are on abiraterone, then you will be not only castrate resistant but also hormone refractory. Maybe if you stop abiraterone and become CR before you fail on abiraterone, you could then start enza- or appalutamide, and maybe you won't have the cross sensitivity patients often get after failing abiraterone. I don't think there's much data on this, however, because early abiraterone is a fairly recent treatment.
Regarding SSDI - I qualified. I think it’s because my PSA, which went from 227 at diagnosis and was at ‘undetectable’ levels for a year, started to rise; it went to 1.8 before adding Zytiga. (Also had chemo, radiation and a prostatectomy.) My reading of the Social Security rules is that when primary treatments fail and you have to take secondary medications, you qualify because you are castrate resistant.
Alan may be correct, however, in saying that all stage 4 PCa cases automatically qualify. The rules are in the Social Security “Blue Book”, available online. I recall that language. But it’s really confusing.
I did not use a lawyer. But it is incredibly important to be thorough in the completion of the paperwork. I think it took me 4 hours or more to fill everything out. You need to make sure you clearly and simply emphasize the rising PSA and that you are on secondary medications. You can’t assume the person reading your submission understands everything - I think they are looking for key words like castrate resistant, stage 4, etc.
After I submitted the paperwork I was told that it could take up to 6 months for them to review my case. Thankfully they gave me a positive answer in a couple of weeks. I still had a waiting period of 6-months before we started getting a check.
Hope this helps.
James
I am castrate resistant, stage 4, gleason 10, metastasis to pelvis bone, BRCA2+. Failed initial treatment of Zytiga/Prednisone. Now on Olaparib.
I filed for SSDI, live in NJ, and was rejected twice. Now pending for appeal thru an attorney; no out of pocket cost for me, and they get up to a maximum of $6,000 fee out of the settlement as regulated by SSA. Apparently the qualification criteria had changed within the last year where prostate cancer patients need to have evidence of visceral (organ) metastasis.
Attorney believes I should ultimately be approved, but the process could take up to 18 months to get my case in front of an administrative law judge. In the meantime I started taking my SS retirement benefit last month, at age 64.
Yes, "funny'" thing is, if I had applied at dx, in Sept 2018, I would have been approved under compassionate allowance... but I was to late discovering I could apply for SSDI.
I did have to fight to get mine approved. I was self-employed and trying to pay for the rediculous medical bills I was accruing during treatment. When I was just about to get approved, they started giving me a really hard time about how much money I made (still below the poverty line), how many hours I had worked, all kinds of BS. I thought to myself: Cancer has been teaching me how to fight, there's no way I'm letting these people win. The person I was dealing with was a real jerk, but I hung in there. In the end, they paid me all the way back to diagnosis.
"my oncologist gave me a prognosis of 4 years in Sept 2018…" Next time you see him/her ask for the future winning Lotto numbers (Send them to me via private message)... He/she must doing too many DRE's and lost his/her sense of direction....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 08/04/2019 10:45 AM DST
Look up past postings on this topic. I found them very helpful.
4 years huh? Given one and a half to two and a half years. My expiration is next month. I'm starting to look very carefully and both ways before I cross the street now.
I think some people think of survival estimates and statistics as if they were a quota system. It's not like your oncologist is going to shoot you to make his estimates more accurate.
Of course, now that I say that, next summer's big blockbuster action movie will involve a big pharma company shooting patients in the control group to make their new prescription medication seem more effective. See Jason Statham as the cancer patient you don't mess with in "Median Overall Survival". 
I know a MRI isn't everything, but if it does shows diffusion restriction, I don't think it is a good idea to stop your first line treatment.
Thanks to all that replied with the great information. I think I will run with the abiraterone as long as it works and hopefully that's several years from now!
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