PSA woes paired with anemia and high alk phos

[Cleodman]

At the Mayo Clinic today getting labs and scans. My PSA has jumped from 300 to 815 in 2 months and for the first time in my 3.5 years of battling this disease my alkaline phosphatase is elevated and I’m mildly anemic. Heading in the wrong direction for sure. Will see what bone scan and CT’s show but I’m not optimistic.

[LearnAll]

Sorry to hear the big jump in PSA. Its not a good sign...BUT.. even more important is rise in alkaline phosphatase...How high is your alk Phos ? Have you tested bone specific alk phos which gives more accurate picture of what is happening to bones . Scans might show osteoblastic type lesions...But all of us have had these lesions...and lots of us have lesions which have healed or disappeared with treatments.

[Cleodman in reply to LearnAll]

Alk phos is 165. Not super high.

[LearnAll in reply to Cleodman]

As a simple rule...half of the alk phos comes from liver and hald comes from bones more or less. If your liver enzymes ALT and AST are in normal range, the above rule can be valid approximately. But, if liver enzymes are not normal..then..only accurate way to know is to check Bone Specific Alk Phos level. ALP 165 is not that bad...this indicates the extent of bone involvement which seems not too much...As for mild anemia.....not an important factor as mild anemia is just a side effect of ADT meds and occurs in everyone on such meds. Your numbers are not as bad as I thought initially.

[Cleodman in reply to LearnAll]

I’ve never had anemia being in ADT for 3.5 years. I disagree with you after my scans return. The anemia and Alk phos elevation is due to the involvement of the long bones now. Both femurs and humerus have mets. My MO concurs.

[CSHobie]

Oh boy, I am sorry to hear this.

Are you on ADT at the moment?

I had these same high numbers combination before ADT.

I am going to be looking for the same solution to this problem in future, please post what you find if you don't mind.

All the best to you, fellow warrior

[Cleodman in reply to CSHobie]

Yes I'm on ADT but I've been castration resistant since May 2020

[LearnAll in reply to Cleodman]

Apology. Being castration resistant does change things a lot. Need to be more proactive and aggressive with treatments. Be on top of it along with your Oncologist.

[j-o-h-n]

Hello Notsdr, You've been a member since 04/19/2016, so would you:

Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond copy and paste it in your home page for your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/24/2020 10:05 PM EST

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

If I could figure out how to add it to my profile I would!

Here is my history: DX age 52. 07/14/08 PSA 135.6. 50 mg. bicalutamide monotherapy 10/08 to 04/09. RRP 12/08. pT3bNOMX. GS 4 + 3 + tertiary grade 5, or 4 + 5. PSA persistence. PSA 0.5 and IGRT to prostate bed 09/09. NIH TARP vaccine trial (PSA 2.75)10/11. BLPLND (PSA 17.3) 07/13 (3N+, GS 4 + 4). Intermittent 50 mg. bicalutamide monotherapy (PSA 49.5) 01/15 to 08/19. NIH ME TARP vaccine trial 12/19. Continuous 100 mg. bicalutamide monotherapy 08/19 to present. Status: mHSPC N+ , possibly bone+, and PSA 86.23 on 09/08/20.

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

I understand.... Getting around here can be quite a task.....

Copy your info, then click on your icon which brings you to your home page.

When there, look at the top right hand corner for "Edit your homepage".

Click on that and then paste your info next to your current text "To learn about other's experiences".

It's as easy but less fun than getting a DRE. 👀

Keep posting and killing those MF little bastards.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/25/2020 11:11 AM EST

[monte1111 in reply to j-o-h-n]

I keep asking my lovely, female, Asian MO for a DRE; she continues to turn me down. The male Urologist actually leered at me. It's a strange new world.

[j-o-h-n in reply to monte1111]

Just tell her you're looking for a happy ending..... I guess the male urologist is looking for a happy ending....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 5:10 PM EST

[monte1111 in reply to j-o-h-n]

The MO and Urologist are probably having happy endings together. Me: I can't remember the last time I had a happy ending, or an ending. Happy Endings to everyone.

[j-o-h-n in reply to monte1111]

I think you meant happy bendings together....

The best and last happy ending I had is when my ex-wife left me.......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 6:10 PM EST

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

Sorry but I forgot to thank you for you quick and detailed response.....Enjoy your Turkey day....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/25/2020 11:17 AM EST

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

Thanks John - Happy Thanksgiving!

[MateoBeach]

That’s a tough jump in such a short time. The Alk Phos rise is not surprising given your known T-spine lesion. The scans will likely clarify. Would ask about Ra223 treatment if predominantly bone involvement. Or targeted SBRT if just a few sites. If there is a man accessible met for biopsy it would be good to get somatic (tumor) genetic testing at this time for targeted treatments or appropriate promising clinical trials. Best regards.

[Cleodman in reply to MateoBeach]

I don’t have any of the know useful mutations. Talking to an MO by Zoom today to discuss PSMA PET CT and LU177. If no availability in trials will likely head to Israel or Germany for one last rally against this disease. My goal was always to make it to 5 years. At 3 1/2 now so we will see...

[Longterm101 in reply to Cleodman]

Any mutations they can identify? Praying for u

[Cleodman in reply to Longterm101]

No mutations useful for current therapies

[Longterm101 in reply to Cleodman]

LU177 seems like the right path forward

[Cleodman in reply to Longterm101]

Yes I think so. Should give me an extra 6-12 months

[Longterm101 in reply to Cleodman]

Hopefully longer !!! 🙏🙏

[pinejogave in reply to Cleodman]

Hey brother I had an excellent response to LU177. PSA went from 900 to 60 I was fortunate to be on the Vision Trial

[Cleodman]

My imagining returned today. In 2 months my radiographic evidence of disease has progressed quickly. Now have mets in both femurs and humerus. Skull, ribs, vertebrae, and pelvis are fulls of lesions. Lymph nodes are enlarged in every region of the body now. I thought I pulled my lower back and right hip doing some landscaping but it is now improving after 10 days so I am thinking that this may be my first glimpse at what bone bone from mets feels like. Damn.

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

Shit, Shit and double Shit.......You're too young for this Shit....Give it all you've got and then some. You will be around here for many many years... God Bless....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/30/2020 5:18 PM EST

[Max135]

CleodmanI think a stronger word then Damn is in order.... Have you given any thought to the trials. One that seems to have some interest at the moment is the AMGEN160 trial. Ben Tran in Melbourne has just released some info at ESMO and thinks its a game changer for PCa.

[monte1111]

I hope you find a way out of this mess. I have nothing to offer but best wishes. I do hope we will both be here next year.