After months of urinary tract problems, I was finally diagnosed with Stage 4 Advanced Prostate Cancer with a Gleason score of 9 by the VA

[diamondrn]

Multiple Myeloma was first suspected because there were more than 5 metastases that showed up in an MRI. We wasted a couple of months going down that rabbit hole.

The APC diagnosis was confirmed in January of this year. The oncologist put me on Firmagon in February and Zytiga plus prednisone in March.

The PSA went from a high of 160 down to under 4, after 3 or 4 months on ADT.

A couple of months ago my PSA started creeping back up. Now it is at 20.

Testosterone is less than 7. The normal range is 241-827.

After having had a Foley urinary catheter in place for more than a year, it was finally removed in late October, a week after a Bipolar TURP had been performed.

The oncologist thinks that the PSA may start going down again since the catheter is no longer stirring things up.

If the PSA does not start going down again quickly enough, he does not want to change everything at one time.

He discussed changing to Eligon and Xtandi; not sure in which order yet.

I am not eager to dash headlong into the castration-resistant marketplace.

Has anyone here had a similar experience?

If so, what did you try and what were the results?

###

[Javelin18]

Hi Diamond,

Sorry to hear about your diagnosis. I have a somewhat similar story. I had been treated for BPH for years with PSA never above 2.5. I had a bad fall last September, with my feet flying up into a sitting position, then falling onto my butt.

At first I was going to the Chiropractor for low back pain, he said it wasn’t resolving normally and referred me to an osteopath at UCLA., He ordered an MRI, which showed bone lesions. In the meantime, my PSA went to 20 in November, and 72 in December.

I scheduled an appointment with a urologist at UCLA, the first week of January. He, like my primary care doctor, said PSA doesn’t rise that quickly with cancer, and it was probably a bladder infection. He tested PSA and urine. Urine came back with no infection, PSA 129. He did a biopsy the next day which came back Gleason 9.

He gave me the initial dose of degerelix, which brought my PSA down to 90. It went to 106 a week later. He referred me to an oncologist and asked her to see me right away. I saw her the next week. The cancer was partially castration resistant. I’ve been through a bunch of standard care which has reversed the trend.

My advice to you is, if you have stage 4 cancer, this is no longer a urinary tract problem, but a cancer problem. You should be treated by an oncologist. That made all the difference for me. They have the experience to guide you to the best treatment options.

[Javelin18 in reply to Javelin18]

Just reread your post. Glad to hear your seeing an oncologist.

[Javelin18]

I'd like to pass on something that I noticed, that the doctors hadn't. Doctors will tell you that the STAMPEDE trial showed that there wasn't a benefit to treating the primary tumor after the cancer had become metastatic. That was the conclusion in this article:

thelancet.com/journals/lanc...

However, when I dug into the data I came to a different conclusion. I'm having trouble recreating my analysis, but I recall that in the beginning of the study chemotherapy hadn't been approved as a treatment. For the subgroup that had metastatic disease and received radiation without chemotherapy, the radiation didn't provide a benefit. For the subgroup that did receive chemotherapy, radiation did provide a significant survival benefit. The overall statistics are skewed by the fact that 2/3 of patients didn't receive chemotherapy. Averaging over both subgroups shows no benefit.

My Alkaline Phosphatase (ALP) was decreasing as my PSA was rising. This indicated that the majority of bone lesions were hormone sensitive, while the majority of castration resistant lesions were in the prostate. It seemed that the castration resistant prostate lesions would continue to seed new resistant metastatic lesions, feeding additional cancer growth. I made a convincing argument to the radiation oncologist that we should radiate the prostate. My oncologist and urologist didn't agree, but I didn't feel I needed them to agree.

Since PCa is heterogeneous, I think we need to treat all the forms of the disease in order to get long term remission.

[diamondrn in reply to Javelin18]

In your recollection, chemo combined with radiation made a big difference. Correct, Javelin18?

[Hidden in reply to Javelin18]

Interesting observation about the different areas of the cancer having different resistance properties

[Javelin18 in reply to Hidden]

That’s my conclusion from intratumor heterogeneity. I think that some cancer develops resistance to treatment, but part of the reason that treatments aren’t completely successful is that they only treat a subclass of tumors. This is most evident with Lu PSMA. If the cancer cell doesn’t express PSMA, then the ligand can’t attach to it.

[Javelin18]

Yes, my PSA went from 151 to 49. It began to climb a month after treatment, but the doubling time went from 3 weeks to two months. It hit a high of 106 , then stabilized at 100 for the next two readings. Over that period I started aberaterone and later added liposomal Quercitin supplement. I can’t say definitely what caused the rise to stop

I started early access to Lu PSMA .just over a week ago. PSMA PET scan showed I was a good candidate. Clinical signs are very positive, I’m waiting for a blood test after Thanksgiving to see how PSA is reacting.

[Hidden]

Hello diamondrn! I didn’t have the turp . But I did have the foley like you for 18 months plus I had k failure so I had tubes implanted into my kidneys also . I know how that feels to drop the foley . Thank God brother . I did imrt . I did Lupron with tak -700 ( now a defunct test adt drug) I’ve been six years clear so far . Still on the pills . No t no Psa . You will gain confidence getting the foley out . I had constant uti’s the entire time . Even the internal stents became colonized each time three days after changing them . I was in the cath lab every 3 months changing those suckers out . You’ve been through hell . I hope that everything will improve for you from here on out ! 👏🏋🏽‍♂️

[meowlicious99 in reply to Hidden]

Lulu did you have imrt post or pre turp?

[Hidden in reply to meowlicious99]

No turp for me .😳

[diamondrn in reply to Hidden]

Thanks for the information, Lulu700.

The Infectious Diseases Doctor at the VA Hospital knows that I am a pharmacist with a clinical background, so he trusted me with keeping a supply of Bactrim DS (a broad spectrum antibiotic for urinary tract infections) on hand, to fend off bladder infections; after having been admitted to the hospital twice, for 6 to 8 days each time, in three months because of potentially deadly septic blood stream infections.

After that I would start the Bactrim DS for 10 days, any time my urine got extra cloudy and stinky. No more serious bloodstream infections after that.

I had a Hydronephrosis (fluid in the ureter between the bladder and a kidney) because of fluid backing up into my right kidney, probably resulting from the tumor and bladder infections.

I refused to have a Nephrostomy (drain tube from the kidney) in my back, as recommended by the Urologist, because I didn't want to live with drainage tubes sticking out my back and my front at the same time. (Imagine trying to get comfortable when sitting down or when trying to sleep.)

I still have some Hydronephrosis, but it is not nearly as serious as it was, since the tumor and UTIs have both been reduced.

Life is pretty good right now. Kind of "on hold."

[Hidden in reply to diamondrn]

It’s funny that you mentioned bactrim . In the end after building immunity to every other antibiotics for constant utis only bactrim would work . Powerful stuff . It a good day when no more antibiotics are needed. I’m sure all that I took contributed to djd and neuropathy ! I lived with the tubes . It was hell . I’m lucky to have escaped that . Hope is that everything for you shrinks away like mine did . I’ve been on hold over six years now when my docs said that Id be long gone . Keep moving! 🏋🏽‍♂️.

[meowlicious99]

3-4 was your psa nadir and you were out of that in a few months on adt + zytiga.

Not quite sure if your psa from 3 to 20 was due to foley. Hard to make sense of that.

Were you able to measure your t to see if you are castrate ?

What do the scans say about the progression?

I think this needs to be taken more seriously. I am sorry you are going through this. This stuff sucks.

[diamondrn in reply to meowlicious99]

Testosterone is still very low; less than 7, according to a blood test from about a month ago, meowlicious99

The normal range is 241-827.

[Hidden in reply to diamondrn]

I am at 3 t . Whoohoo! 😳

[Tall_Allen]

Multi-month Eligard replaces the monthly Firmagon shots.

Consider docetaxel before Xtandi.

[diamondrn in reply to Tall_Allen]

We will be changing from Firmagon to Eligard in December.

I forgot to mention in the article that my Testosterone is less than 7.

The normal range is 241-827.

Would that make a difference when considering docetaxel before Xtandi.

Admitting my ignorance, why do you think docetaxel would be better than Xtandi?

By the way, you were right-on when you recommended going from 5mg to 10mg of Prednisone, when I began having high blood pressure problems with Abiraterone.

Thanks and Blessings, Tall_Allen?

[Tall_Allen in reply to diamondrn]

Glad the extra prednisone worked!

I assumed the Firmagon was working in suppressing your testosterone. Eligard will take over that role.

It is usually better to alternate hormonals and chemo. Sometimes chemo re-sensitizes the cancer to a hormonal therapy after one has failed. Although you started with Zytiga, this article explains the logic:

prostatecancer.news/2019/12...

[KJMinPhx]

Diamond:

You talked of having a foley in place for more then a year, but you don’t mention UTI’s. I had a foley in place for around 3 months and during that time, I had SIX UTI’s, 3 of which required long hospital stays ( average 5 days per stay). So my urologist taught me to self catheterize and I have not had a UTI since.

The big point of my message here is that if anyone needs a foley, ask to self catheterize after your first UTI.

As for similarities with your history, I have many. I still wear nephrostomy tubes in my back (out of the kidneys)

I spent 2+ years on Zytiga + prednisone and Lupron, and I remained castrate sensitive that whole time. Indeed, I still have negligible PSA, but something was going on in my bladder- the cancer was growing up to my ureters even with negligible PSA.

Just finished my first round of 3 infusions of taxotere, and will be scanned this week to see what’s now happening.

Fuck cancer, I’m fight it every chance I get.

[diamondrn in reply to KJMinPhx]

The Infectious Diseases Doctor at the VA Hospital knows that I am a pharmacist with a clinical background, so he trusted me with keeping a supply of Bactrim DS (a broad spectrum antibiotic for urinary tract infections) on hand, to fend off bladder infections; after having been admitted to the hospital twice, for 6 to 8 days each time, in three months because of potentially deadly septic blood stream infections.

After that I would start the Bactrim DS for 10 days, if my urine got extra cloudy and stinky. No more serious bloodstream infections after that.

I had a Hydronephrosis (fluid in the ureter between the bladder and a kidney) because of fluid backing up into my right kidney, probably resulting from the tumor and bladder infections.

I refused to have a Nephrostomy (drain tube from the kidney) in my back, as recommended by the Urologist, because I didn't want to live with drainage tubes sticking out my back and my front at the same time.

I still have some Hydronephrosis, but it is not nearly as serious as it was, since the tumor and UTIs have both been reduced.

I have self-catheterizing equipment on hand. Only had to use it 3 times about 6 months ago.

Life is pretty good right now. Kind of "on hold," KJMinPhx

[Doseydoe in reply to KJMinPhx]

My PCa grew into my bladder and closed off my left Uterer. I needed a stent in place for ten months until I finally got it under control. Docetaxel shrunk the tumours in my Prostate and Pelvis but had minimal affect in my Bladder. I needed a TURBT and IMAT Radiation. This did the trick and when the Urologist went in to change out the stent he considered the uteral cavern clear enough not to keep a stent inplace. So happy. That was 12 months ago.

[diamondrn in reply to Doseydoe]

Great news, Doseydoe.

Praise God.

[JPnSD]

My Urologist delayed my Stage 4 /GL 9 biopsy by 18 months...as he didn't feel it was warranted given my enlarged prostate and blood in semen because my PSA was below 4. I had to fight to get it the 2nd time! You just can't trust anyone else in this journey...always push for what you feel you need. I found the Firmagon injections painful...I now use oral Orgovyx (same type of ADT)...but no pain. It works well for me.

[diamondrn in reply to JPnSD]

The VA kept ignoring my prostate cancer because of relatively low PSA numbers. If I remember correctly, it was about 3.8.

They just kept treating the BPH symptoms until it was too late to operate when the PC was finally discovered, JPnSD