ideas welcome!

[Dalipup]

hello all, this is my first time posting but I have been following you for about a month or more and my goodness you are a helpful crowd. My husband was diagnosed in April of 2018 with PSA of 180. sent to urologist for consult who sent us for bone scans and ct of abdomen and scheduled biopsy, however no urgency so that was scheduled three weeks out. bone scans and CTs showed extensive mets to skull, shoulders, ribs, spine, pelvic bones, legs, etc. CT showed lymph nodes involved but no other organs. alkalines were super high, can't remember but in the high hundreds. sent to oncologist who said they wouldn't do anything until prostate biopsy. the day before the biopsy my husband landed in the hospital with what they said was a super bad vertigo episode so two days in hospital made him miss the biopsy and they wanted to schedule it 6 weeks away!!~! so I got on phone and started calling other urologists. got into a different one within 48 hours and they handed us a bottle of Casodex to begin treatment and scheduled biopsy for the following week. at the same time I had also contacted U of M cancer center who got a hold of us and said no biopsy was needed, he obviously has prostate cancer, so biopsy was canceled and we went to U of M where they injected hubby with Two shots of firmagon and the next day his pain was gone! however two days after that, the symptoms of "vertigo" came back and this time they figured out that he had a stroke! so in hospital for five days with that, and he made a miraculous recovery where he was able to come home and did months of PT to regain balance and strength. A month after the firmagon shots he began 3 month Lupron shots and stayed on Casodex. PSA at time of first treatment had gone up to 208 but next PSA draw it came down to 19! it continued to drop to 4.1, 2.1 and 1.4. Oncologist added Zytiga and told us to go home for three whole months! wow! however in December hubby started getting some hip and back achiness, so in January of this year 2019, he went for scans that showed all lymph nodes reduced and many of the bone mets reduced however one new one on spine. switched to Xtandi, PSA continued to rise going back to 2.4 then 4.1. taken off Xtandi and told he needed chemo. did five rounds of doxetaxel and PSA jumped 8 points from 12 to 20 with first dose. after that it kept rising slowly while on chemo. All of this time we were eyeing the LU177 trial, however once oncologist read fine print found out we needed a physical sample of the cancer and since no biopsy had been done, he needed to get one. he had done a Guardant 360 blood test early on that showed that he had cancer, but it did not type it and gave us no DNA information. in April they tried for a bone biopsy and that came back benign...oncologist felt they didn't handle sample well. at the end of June hubby was getting neuropathy in feet and PSA was not going down, so doc decided he didn't want to keep him on chemo that wasn't helping and risk not being able to do many doses of next line of chemo (cabazetaxel) due to neuropathy, but we decided to take a little break and try for a sample to get into the vision trial. hubby has done another bone biopsy, two bone marrow draws, one on each side of his back, and attempt at hitting a lymph node (which they missed completely) and now just went back and finally had the prostate biopsy...all have come up empty for a cancer sample. Urologist said he had a nugget of a prostate last week. however the PSA is rising slowly, about three weeks ago it was at 45, and his aching back and hips are back. our next attempt, thanks to all of you, is to rechallenge with Zytiga and Dexamathazone and see oncologist in a month to see if that is helping, and then I guess on to the next chemo. has anyone ever had these types of issues getting a cancer sample? He needs this to be on any type of study, to get DNA sequencing, etc. needless to say this has been a frustrating summer of scheduling biopsies and then waiting on results and then scheduling again.

thanks for any insights you can give us!

[whatsinaname]

Boy !!! Your husband sure has been through a lot

I am sure you will get a lot of replies.

All the very best to both of you !!

[Hidden]

Sorry to hear he had that bad start with a Urologist who wanted to biopsy his prostate with obvious advanced metastatic PCa. Glad you didn't wait for that waste of time and now have a Medical Oncologist. Sounds like he is now getting the systemic treatment he needs for advanced PCa.

I agree that he needs to have genetic testing done to see what mutations are there. Hopefully that will help direct the treatment choices for him.

In addition to getting a tissue sample through a biospy, there is also what they call a "liquid biospy". They look at circulating tumor cells. You can get that through a company called Foundation One. I would recommend trying that since the tissue sample biopsies haven't worked.

Hoping for the best for him.

[Dalipup in reply to Hidden]

Thank you gregg57. I have seen Foundation One mentioned here and that was on my list of looking into today. the Guardant 360 was supposed to do the same, but for some reason my husbands cancer doesn't seem to be floating by anywhere. with this many benign results it would be lovely to believe in them, but we know due to his pain and his PSA that isn't the case. We are looking into getting at PSMA scan paying out of pocket, but I'm not sure that is even possible without a sample. also forgot to mention he is getting Zometa infusions every four to six weeks. his Alkalines went to a high of around 1200 but are now down to like 70s so in the normal range.

[Hidden in reply to Dalipup]

That's a really good sign that his ALP has gone down so much. Sounds like you already know that it's important indication. One of the problems with the circulating tumor cells tests is their lower sensitivity. If you have to go back to getting another biospy, the active new mets is where you'd want to go if possible. That's my understanding. There's a good chance that some mutation is driving the resistance.

Also, a new androgen blocker called Nubeqa (Darolutamide) has just been approved. It has been found to block the activity of all known AR mutations, including the F876L mutation that shows resistance to Xtandi and Zytiga. Technically, it's only approved for non-metastatic castrate resistant PCa but he might be able to get it anyway. Something to talk to his doctor about.

[Tall_Allen]

It sounds like the problem with obtaining an adequate biopsy sample is that the hormone therapy and chemo was so effective at shrinking his metastases. (This is a good thing.) Most genomic analyses, like Foundation One, require very large samples of the cancer. Guardant 360, as you know, samples the blood, so obtaining an adequate sample isn't an issue, but his therapy may have interfered. Biopsy of the prostate is a waste of time and introduces needless potential issues - it is only the metastases they need to biopsy.

Now that he is metastatic and castration resistant, he qualifies for Provenge, Xofigo and Jevtana. The VISION trial is winding down. But perhaps he will be able to get Lu-177-PSMA-617 when it is approved in the next couple of years.

[Dalipup in reply to Tall_Allen]

Thanks for your response Tall_Allen. We were avoiding the Xofigo due to the hope of getting into Vision trial. Still considering doing PSMA test out of pocket since if there is no PSMA then Lu 177 is pretty much irrelevant yes it does seem the meds have worked well for him He had scans in June that showed no progression of disease and numerous places it has shrunk but that darn PSA keeps creeping up so that has been worrisome

[Tall_Allen]

PSA differs markedly among cancer types, which is why scans, bone ALP and other biomarkers have to be looked at.

[larry_dammit]

Wow the monster is hiding well. Hope this gets better for you as there is nothing worse than bad news at this stage. Fight the monster 🙏🙏🙏

[Dalipup in reply to larry_dammit]

It certainly is a monster!!!

[Jackpine]

Dalipup,

Are you at the Univ of Minnesota? It sounds like your husband has been through war to much without proper testing. I would go to the Mayo Clinic and see if you can see Dr. Eugene Kwon. He is amazing to work with, is very familiar with the Vision trial.

It’s amazing you have been dealing this long with out a prostate biopsy, and the lack of urgency is unacceptable.

[Dalipup]

We are at the university of Michigan. The lack of urgency was through a different provider that we switched from last year. Without a sample the vision trial is off the table. He will be starting zytiga again ( as soon as the meds are delivered) along with dexamethasone if that doesn't work we will jump to province next I think then on to jevtana I guess. Thanks for the doc name at Mayo. This forum has been so valuable to us!

[j-o-h-n]

Your husband needs a medal.... (and hugs/kisses from you). How old is your husband?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/12/2019 5:18 PM DST

[Dalipup]

Just turned 64 in March. Second marriage and we have a 17 year old son graduating high school next June

[Hidden]

Another victim of a stupid archaic "Rule Book" the cancer Industry follows so they do not get sued - but perhaps a little in your favour this time!

I am not a believer in a dangerous prostate biopsy when cancer is obvious. The Gleason scores also have little meaning with a PSA of 180.

Your husband also is an example of another simple observation - if the prostate and lymph nodes are left in place, after a few months of standard treatment the cancer will likely be gone from these "soft tissues" and the bladder functions will return to normal. Makes me wonder why we see so many RP's in this forum! (That Rule Book again?)

The story I was told was that the Greeks were the best at extracting cancer cells from blood, and a few other European labs learned how to do it too - but USA labs were still far behind.

You make no mention of finding the cause of his Pca. It is logical to stop doing whatever it was as the first thing to do.

You make no mention of making any effort to go onto a raw food diet to get his immune system helping. The chemo does permanent damage to the immune system, so it becomes all that much harder to get a natural kill going again. But every little bit helps to add life and Quality of Life.

I have been down a similar road, and in very bad shape after chemo. With 2 weeks of Xtandi and Sodium Ascorbate via IV, my PSA was down 85.6% (after 4 weeks 95%) and I was living again. I still do this 22 months later (most of that time was just 1 Xtandi capsule per week with zero side effects).

Cancer puts you on one hell of a learning curve! Glad to see you are on it!

[Dalipup in reply to Hidden]

Was wondering that myself on the RPs.

His mom died of cancer before we were married so my info is sketchy but think it was metastasized breast cancer. Why I wanted to see the DNA.

He has never been a great eater however he has gone no sugar for the last five weeks. We are adding good organic veggies and fruits and eliminating junk. Slow process but stepping in the right direction He takes vitamin D and C and we have started probiotics and digestive enzymes. Hoping to fix up the gut and strengthen immune

Thanks for your input.

[Hidden in reply to Dalipup]

Good news! He could add years to his life going down the narrow road. But be careful of "treats" - as far as I can tell a sugar spike lasting 20 minutes is enough time to make a new generation of baby cancer cells, and weeks of work can be undone. Best wishes to you both.

[tallguy2]

Wow, your husband has been through hell and back! From what I am reading you are back on track with some excellent options. Best wishes!