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PSA 1700 mCRPC...PLEASE READ-PLEASE HELP!!!!

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Posted 7/16/2017 6:37 PM (GMT 0)
Hello all,
My dad is 62 , diagnosed 4 years ago. Gleason 7 & PSA of 5 at diagnosis. Has current PSA of 1700 and rapidly climbing. Docs say they have never seen case like my dad. For a gleason 7 to be behaving so aggressive doesnt make sense. Also the disease in mainly only lymph node involvement with 2 smalls spots on bones.

Removed prostate robotically & couple months later removed lymph nodes.
Failed all hormones within a month of each one. (exception is Xtandi lasted 6 months)
Failed radiation
Failed chemo: docetaxel , cabazataxel and a cocktail chemo (with dr Bruckner)
Lu177 PSMA - did one cycle and shrunk all tumors- problem is many new ones grew
Currently on Olaparib/Lynparza - brought PSA down 30% on full dose for 2 weeks. Side effects intolerable though so we currently stopped it.


Nothing ever worked. Is there anything else any of you can recommend?

My dad also has lymphedema in both legs and stomach from all the treatment and the tumors in lymph nodes obstructing blood flow to legs- any recommendations for that?

I have heard great things about high dose estrogen- does anyone have any experience or insight on this? Would it work even though my dad had never really responded to hormones. My dad is currently still on Lupron every 3 months.

Anything else people recommend? Doctor at Sloan only gave us a month left but it's weird because my dads disease Is mainly only in lymph nodes- no organs and only 2 small spots on bones. Its been over a month now.

Wanted to know if anyone advanced mCRPC has tried high dose vitamin C IV, sodium bicarbonate IV, dmso magnesium sulfate IV, germanium IV with dmso, alpha lipoic acid? IF so have you had results.

We have stayed away from immunotherapy given that my dad has ulcercolitis and crohns (although it has been dormant for last couple of years).

Anything else anyone can recommend?

Please someone give me good news. My dad is father of 6 and we all love him dearly. Need to turn this around, please help!!!!! We have the means to spend whatever for any treatment out there please let me know.
Posted 7/16/2017 7:35 PM (GMT 0)
The medical oncologists at MSK, particularly Howard Scher, are about the best anywhere, so he is in good hands. I'm impressed by all the therapies they've tried on him.

It is unlikely that the cancer is only in the lymph nodes. While the detectable cancer is only in the lymph nodes, there is probably a lot of cancer that is undetectable -- it is micrometastatic and systemic. MSK is testing a new radiotherapeutic agent, similar to Lu-177-PSMA, that may be even better. But because he already had the Lu-177-PSMA, he is not eligible for it. He may be able to get it in Germany:
/pcnrv.blogspot.com/2017/01/i-131-mip-1095-new-radiopharmaceutical.html

Is his testosterone level suppressed by the ADT? If not, maybe an estrogen patch can help. There are clinical trials for some new hormonal agents, apalutamide and darolutamide, that he may not be resistant to.
Posted 7/16/2017 9:29 PM (GMT 0)
He may not be eligible for another Lu177 treatment, however, in Germany they will usually repeat that treatment several times since after a while new mets appear again.

You can call the clinic in Heidelberg and get the I-131-MIP-1095 treatment done - if you pay in advance.

George
Posted 7/16/2017 10:06 PM (GMT 0)
You may not be there yet, but it might soon be time to get out front of potential end-of-life matters and to ask the doctor(s) at MSK, "What are all the Options for Hospice?" Then discuss each of his worsening symptoms, in turn, and consider the when/where/how/why of where his future days may best be spent. It will not be an easy conversation, but having such conversations sooner is often so much better than having them too late, or not at all.
Charles
Posted 7/17/2017 12:23 AM (GMT 0)
HIS TESTOSTERONE LEVEL IS SUPPRESSED BY ADT.

ANYTHING YOU CAN RECOMMEND? DO YOU THINK ESTROGEN WOULD WORK IF HE FAILED HORMONE THERAPY IMMEDIATELY?? WOULD THE PATCHES CAUSE ANY CARDIOVASCULAR RISKS ?

Tall Allen said...
The medical oncologists at MSK, particularly Howard Scher, are about the best anywhere, so he is in good hands. I'm impressed by all the therapies they've tried on him.

It is unlikely that the cancer is only in the lymph nodes. While the detectable cancer is only in the lymph nodes, there is probably a lot of cancer that is undetectable -- it is micrometastatic and systemic. MSK is testing a new radiotherapeutic agent, similar to Lu-177-PSMA, that may be even better. But because he already had the Lu-177-PSMA, he is not eligible for it. He may be able to get it in Germany:
/pcnrv.blogspot.com/2017/01/i-131-mip-1095-new-radiopharmaceutical.html

Is his testosterone level suppressed by the ADT? If not, maybe an estrogen patch can help. There are clinical trials for some new hormonal agents, apalutamide and darolutamide, that he may not be resistant to.

Posted 7/17/2017 3:05 AM (GMT 0)
Aha, we are almost in the same boat! My dad is also stage 4, after two years on Zytiga his psa is rising and doubling every month!! It is heartwrenching. I am so sorry to hear about your dad.
My dad hasn't had chemo or xtandi yet, those are his last two options at the moment. Why doesn't your dad try provenge? I heard the side effects are pretty minimal compared to hormone therapy and if you are saying his Crohns hasn't been flaring for a while I would definitely try that.

Can I ask you who administered the LU77 PSMA treatment for your dad? My dad started at Sloan and although they have a great reputation they are very cookie cutter in their treatment, so we decided to try Dr. Charles Myers, he customizes treatment for each of his patients and really a pioneer in this field. I think it is worth it if you give him a call. Alot of healingwell members are patients of his and he is simply amazing.
Posted 7/17/2017 4:04 AM (GMT 0)
You said his "T" level is suppressed by the ADT...Do you know the actual testosterone number?
Posted 7/17/2017 4:13 AM (GMT 0)
Ahaj,
Welcome sweet Daughter. I'm sorry you are having to deal with the pain of advanced PCa.
I am curious as to when your dad's scans were done. His symptoms sound similar to my husband's when his liver became involved.
If he has fluid in his abdomen he could possibly have a paracentisis to remove it, and then the fluid could be tested for neuroendocrine mutation too. Gary has also been on spironlactone, a diuretic, but you have to be careful with that one because it could lead to potassium toxicity.
Beth
Posted 7/17/2017 1:22 PM (GMT 0)

ahaj8 said...
.....My dad also has lymphedema in both legs and stomach from all the treatment and the tumors in lymph nodes obstructing blood flow to legs- any recommendations for that?.....

So sorry your dad is having so many problems. I also have lymphodema in my torso and legs thanks to my surgery. Have your dad wear support hose (stockings) on his legs that go to the knee. Also I use a pneumatic compression device daily that squeezes my legs which moves the fluid back up the legs. My legs ache but the device has really helped.
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