Liver Mets & NEPC properties w/o drugs driving it?

[Rsdutcher7]

We have been treating my husbands BRCA2 aggressive PC with many alternative therapies for 3 years. WFPB, Infared sauna, PEMF mat, supplements, IV’s, etc. Last year when it went to bones & lymph’s, we added low dose Lupron with 7 months Epigenetic treatments. We went for for 19 Days of treatments in Germany in May.

These treatments showed great improvement.

In July...his liver enzymes spiked and his hemoglobin has been dropping steadily (9.6 now). Plus Nucleated Red blood cells, 230.

So here is the question:

Chromogranin A was 128 (high) in May. Showing NEPC possibility. Friday his liver ultrasound showed a 2.5cm mass that wasn’t NOT there in May. Zytiga/prednisone were prescribed in June but he never started because his liver enzymes & anemia were already a problem.

Appointment with hematologist to see if in bone marrow scheduled in a few weeks.

We avoided the The ADT route & have put very little in his body AND he’s never had Zytiga, yet most likely, NEPC... The thought process is that these drugs drive it to be NEPC, So why is he castrate resistant AND has liver mass without all the drugs?

[Tall_Allen]

NEPC is a rare finding, and should not be diagnosed based on just chromogranin A levels. IHC on biopsy is more informative. Its incidence increases as the PC progresses, eventually getting as high as 17%.

Castration resistance is part of the natural history of PC progression and it will occur whether a man is using ADT or not. ADT helps one live longer, especially if used early. As the cancer progresses, the AR upgrades, so it gets increasingly sensitive to even the smallest amount of testosterone. It's not too late to start ADT now. If his blood work improves he may still benefit from docetaxel and carboplatin.

[Schwah in reply to Tall_Allen]

Hi TA. You say ADT helps one live longer. I know that’s the conventional wisdom. And I was on ADT (with Zytega) for two years. Zimbabwe aware of some very convincing studies that adding Zytega or chemo to ADT extends lives. But are there actual clinical studies that prove ADT on its own (vs no ADT) extends life of PC patients? I assume there are but I’ve never seen one.

Schwah

[Tall_Allen in reply to Schwah]

No- just studies showing that GnRH agonist+antiandrogen increases survival over agonist alone. It would have been unethical to give nothing because the estrogen pills, which it replaced, was causing fatal blood clots.

[ronnie1943 in reply to Tall_Allen]

Hi Allen,

just wanted to up date you on the Lu-177. Treatment for my Husband Sam... just a couple weeks ago we had to update all tests, bone scan,

cat scan,blood work etc. ... all had to be within twenty days of the PSMA scan... Went Gettysburg this past Wednesday the 21st to get the Pet/cat for the PSMA.. Got the news today that Sam qualified for the trial, but was denied by the drug company.... Sam was one the ones of the 66% that is denied.... We are just devastated, we had such high hopes.... Going back down to

Jefferson hospital tomorrow, The dr there wants to put Sam on Xtandi Don't know if that drug would have any effect on liver tumors. If you get a chance I'd like to get your opinion.

There was this guy that spoke to us at the Gettysburg medical center. He was involved in researching clinicial trials for PC. He mentioned there are two other trials.... Didn't really get any info. On the trials, we never thoughtb we would get back home were going to get denied the

Lu-177.

Will wait to hear from you. Bet you get exhausted answering everyone. Many on this forum want value your educated opinion. Me too!!!

Sorry for the long email, I ramble when I get nervous. Pray a lot too!!

Sincere Best wishes coming your way!

Lynn.

[Tall_Allen in reply to ronnie1943]

It sounds like he was accepted into the trial, but randomized to standard-of-care, not really denied. But I understand that you were hopeful that Lu-177-PSMA-617 would help him (it doesn't work for everybody). That's just how Phase 3 (randomized) trials work. It should have been better explained to you.

Yes, there's every reason to believe that Xtandi would work well on his liver mets. Although, given that Zytiga has already failed for him, I'd also discuss the possibility of cabazitaxel+carboplatin. Maybe followed by a PARP inhibitor if the platin works.

As for other radiopharmaceutical trials that don't have randomization, you may wish to consult with Scott Tagawa at Weill Cornell in NYC.

[ronnie1943 in reply to Tall_Allen]

Thank you for getting back to me...Sam and myself are still a little disappointed, but you helped ease our minds,also explaining how the trial works. Sam and I are headed to Jefferson hospital today, we have an appointment with the oncologist there. I guess we will start with the Xtandi and see where that goes. I will mention to the oncologist the Cabazitaxel+Carboplatin. Thanks again for all your help. I will also reach out to Scott Tagawa in NYC.

Never give up and never give in...

Sincere best wishes..Lynn

[ronnie1943 in reply to Tall_Allen]

Hi Allen, went to see oncologist at Jefferson in town yesterday. We will wait to receive the Xtandi that the dr. Is prescribing for now..

Had blood work done yesterday and nurse called this morning with results. Mind you,Sam has not been on any treatment for over two months.

now....PSA went from 89 two months ago to 500 as of today. . Everything else in blood work was pretty much in normal range? I'm a nervous wreck. Could a high PSA of 500 just be the fact that Sam is not on any treatment??

When you get a chance could you let me know what your thoughts are.

Thank you..

Lynn

[Tall_Allen in reply to ronnie1943]

Yes- his PSA will go up without treatment

[ronnie1943 in reply to Tall_Allen]

That's again.. That eased my mind... My husband Sam after all these years.... 10 to be exact, still does has not much knowledge about his disease. I think at times he really didn't want to know. He always has said...It is what it is!!! What's that saying ? ignorance is bliss?? Well, I'm not much better,but I know a little more then him... Sam has always been a very private person, and a man of few words, except when it came to his construction business. He loved his heavy equipment... Since I told him about you being so well educated on this disease, he will ask me to ask you questions. You would think in the ten years since Sam was first Dx I would myself been more informed..Sam did so well for so long, I guess I thought it would always stay that the same.

Here I go rambling again... It's my nerves..

Take care, thanks again...

Sincere best wishes...Lynn

[ronnie1943 in reply to Tall_Allen]

Hi..only way I know how to get ahold of you is by old posts. Not to good with all this tech. Need your educated opinion again. husband was denied the Lu-177. Sam is still part of the trial, but put on Xtandi, they call it " best of care" waiting to qualify for the lu-177. Sam was off treatment for about three months PSA went from 89 to 500 , now being on Xtandi for three weeks, as of today PSA rose to a thousand. What is your thoughts about Xtandi, being as PSA rose so high after three weeks.

Will wait to hear from you, I so respect your opinions.... so worried.

Thank you.

Sincere best wishes.... Lynn

[j-o-h-n in reply to ronnie1943]

Hello Lynn........ This will confirm what you know already... Men are nothing but big boys. We are scared of doctors, and don't want to know anything about our health, just our toys. You're doing a terrific job watching over him and God will bless you for that...Keep plugging away... He (we ) need women....They are the strong ones..... (don't tell my wife I said that)....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/24/2019 7:16 PM DST

[ronnie1943 in reply to j-o-h-n]

Lol!!! 😂

[Tall_Allen in reply to ronnie1943]

Is he on Lupron plus Xtandi? if so, he can potentially try estrogen patches. Does his blood work allow for chemo?

[ronnie1943 in reply to Tall_Allen]

Hi Allen, thank you so much for your quick your response..alway respect your opinion, as do so many others on this site. Sam is on Lupron and just started Xtandi three weeks ago. This past June chemo had stopped working for him. ... Since the end of June until now Sam basically has been off all treatment. We were sent to Jefferson to see if Sam could get in the lu-177 trial and took from the end of June until just three weeks ago to get him back on treatment. Wondering if that might be the reason for the rising PSA. being off treatment for almost three months.? Went from 49 when chemo stopped working to 89 to 500 to a thousand as of today. Don't know if just three weeks on Xtandi that it would be working yet or if it takes more time?

Dr Tester at Jefferson said today that blood work looked better then this past blood work that I have listed below , don't have the numbers as of yet... He said liver enzymes went down etc. he called Sam today a couple hours after we left our appointment with him.

Alp 212

Ast. 65

Alt. 40

Total Billirubin. 0.7

Sam had agreed to stay in the trial called standard of care... For now I guess we have to give Xtandi a chance to work. It really has only been three weeks that Sam has been on the drug. Dr tester did say that at,east this treatment is pill form, I guess he was saying that if this works it would be easier then chemo???

Would so appreciate any thoughts you may have on how long it takes for Xtandi to start to work? or if being off any treatment for three months would have done caused this fast rise in the PSA?

Sorry about the long post, I ramble when I get nervous.

Take care and thanks again....wait to here from you.

Lynn

[Tall_Allen in reply to ronnie1943]

All you can do is track it to see if he recovers from his vacation.

[ronnie1943 in reply to Tall_Allen]

Such a waiting game this cancer.

Take care ... have a nice night.

Thanks again... Lynn

[Hidden]

The only way to know for sure whther is NEPC is to have the liver mass biospied if they think it's cancer. I agree with TA about the Chromogranin A not being diagnostic, but it should be investigated in my opinion.

He could also start primary ADT, but chemotherapy in addition is most likely the path forward. If he is BRCA postive, PARP inhibitors are an option.

Just curious, what is his PSA?

Are his platelets OK?

[Rsdutcher7 in reply to Hidden]

He has been on Lupron since December with a slow progression down. In Germany they gave him Bucerelin (at higher dose) and his PSA dropped from teens & twenties to 2.6 currently. At the same time it jumped to liver & his liver enzymes sky rocketed. Just in July, been coming back down. Now almost normal again (with the new mass) if we didn’t do monthly blood tests we wouldn’t have known to look at liver with imaging. Platelets 298 (Jul) when enzymes spiked, then 246. (Aug) now 286. Red Blood cells keep dropping. Red & white 4.6. Hemoglobin 9.6.

[Hidden in reply to Rsdutcher7]

I would try to find the cause of the dropping red blood counts and low white counts.

[Rsdutcher7 in reply to Hidden]

8,6, 9.0, 9.4 just in last month...rising.

Bone infiltrated AND liver met at same time.

He’s also dumping a ton of worms in his stools last few months.

We got wormwood IV in Germany and some parasite cleanses lately...it’s amazing what’s coming out. And freaky!!

[Hidden in reply to Rsdutcher7]

I was wondering if there was bone infiltration. What is rising?