Ask for advice on my progress, mCRPC Cabazitaxel

[bjornbar]

Hi all, my first post here. I am to see my M.O. next week, just want some advice from you guys on my current Cabazitaxel, does it work or not... As seen in the tedius diagram I assembled below, show my last year story since Dx april 2019, the ALP (AlkP) responded directly, but the PSA is just this week seen to change direction for the better, today value 94.

A few notes: Today on ADT Leuprorelin, Cabazitaxel 20mg/m2 every 3 weeks, 4 rounds so far, and Prednisolon 10mg. My history is ADT and early Docetaxel 6 X only. No 2 gen ADT, no RP or RT to prostate. At the mCRPC 'event' the PSA doubling time 3 weeks.

A few days with minor bone pain in jan 2020. I live an active life, 65 years, but the chemo take down my performance of couse for a week. But no bone pain.

I had CT and Scint a month ago, tells at pelvis and thorax bones there is "progress of sclerotic metastases". No other issues for liver or lymph nodes thankfully. As I understand there is a debate if the progress is scars from healing, or ongoing activity...

All thoughts welcome !

[Hidden]

I think your chart is great and very helpful. From the blood tests, it looks like Cabazitaxel is working for you at this point although you will have to continue to get imaging to know for sure.

2 questions:

Is it possible for you to get either second-line ADT drugs Enzalutamide or Abiraterone?

Have you had a biospy to do molecular testing for treatable mutations?

[bjornbar in reply to Hidden]

Thanks Gregg, on the imaging, I am sceduled for a new set of CT and Scint in three weeks, so I guess I need to patient until then.

Yes the second line ADT is available for me, I live in Sweden and the "standard treatments" offered here is similar to the US , ( but Lu-177 is not offered yet).

I had no testing for mutations what I know of, but I will discuss this with my M.O. next week.

I didnt tell in the first letter, but my current Cabazitaxel treatment is within a phase3 study "PROBIO" , (ClinicalTrials.gov Identifier: NCT03903835) and the study says on my arm: "Experimental: Treatment 4: Cabazitaxel Patients with the TMPRSS2-ERG gene fusion will have increased chance of receiving chemotherapy at study onset.

"

But I dont know if this applies to me, or the Cabizitaxel track was chosen on other reasons.

No biopsy anyway except the initial Gleason test one year ago.

[Hidden]

Two things stood out in the chart you posted: The time to CRPC was fairly short and the ALP seems quite high in relation to the PSA numbers.

I can see the short time period to CRPC being a possible reason why the Cabazitaxel track was chosen for you. Short time to castrate resistance favors the path of chemotherapy vs. second-line ADT drugs. And you do seem to be responding to chemo so that's good.

You might still be able to get something out of either Enzalutamide or Abiraterone down the road, but I would think continuing chemotherapy right now is the best option.

That's my opinion, but you can discuss this with your doctor since I'm not.

Wishing you the best.

[Tall_Allen]

Cool chart! Your ALP and your PSA are responding well, so what is the issue? PSA often goes up when a new therapy is started because cancer cells are dying, releasing their PSA. I think you are getting those readings way too frequently, causing your myopia and anxiety.

[Walkingwell in reply to Tall_Allen]

Can you help me understand 'PSA often goes up when a new therapy is started . . .'? Thank you!

[Tall_Allen in reply to Walkingwell]

Sure. Anything that kills prostate cancer cells will release their PSA into the blood stream.

[Walkingwell in reply to Tall_Allen]

Thank you. Currently, I'm taking estracyt. Based on what you say, if estracyt is effective it may cause a PSA spike. Is that right?

[Tall_Allen in reply to Walkingwell]

I'm not sure- it's not used much in the US.

[j-o-h-n]

6'1" and 158 lbs? Are you forgetting to swallow your food?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/01/2020 7:37 PM DST

[Jbooml]

Try the cholera vaccine Dukarol.....as indicated to improve OS in Swedish retrospective studies...if you can smash your PSA nadir below .5 your chances improve dramatically. You have an interesting profile showing improvement twice to chemo. That’s encouraging.

[bjornbar]

Thanks for great responses, I feel the good mood here.

For j-o-h-n, to be honest, I was plus 4 kg (8 lbs) four months ago, but started a shift to LCHF or Keto Diet sort of, this got the muscles more well defined, hopefully only fat was lost, and I know I keep my performance on my MTB track. What the Keto do for the cancer is still to explore. My BMI~21 is maybe like skinny but whitin "normal"... Cheers !

[j-o-h-n]

Maybe eat a Hershey bjornbar once in awhile....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/02/2020 6:16 PM DST

[Shanti1]

Would you share what program you used to make your amazing graph? I would like to do something similar to have better visibility to the influence of my husband's treatments on his numbers.

[bjornbar in reply to Shanti1]

I started from a graph of the ALP and PSA which is supplied from the online customer service of swedish healthcare (where I live). But without this servce, if you just got as set of number data and date's, you can use Excel to do a similar graph. Then I moved the graph picture to MS Paint and added my treatment history with some rude boxes and text. As an engineer by trade I am a bit stuck on visualizing instead of writing long texts. Thanks for kind words. For the computer tools there is much of tutorials on the net.

I checked your low polyamine post, interesting area really.

[Shanti1 in reply to bjornbar]

Thanks for the info on the graph, I can figure that out. I was thinking it was all in one program, it never occurred to me to use two. Yes, the polyamine restriction is interesting, I think there is something to it, but it is not a diet my husband is interested in following. He is vegetarian and some of his favorite veggies have high polyamines. Wishing the best for you.

[Peterd110]

Have you had new scans lately?

[bjornbar]

Hi Peter and all,

yes in the month since my post this has been:

Just days before the next Cabazitaxel (the 5th) infusion I had some pain, much like sciatica according to my doctor and my own conclusions. Most on right side but at time on both, making it painful to do more exersize than walking. This went away for one week, starting a day after the infusion, but returned eventually. Same story now last week as I got the 6th infusion. My M.O. did order a MR scan and no worrying things is seen.

Just before this I had the planned CT and Scint scans, and the result is "stable" on the CT and small progress in the Scint. My last PSA do rise again to 145, while the ALP is stable. My M.O. says with this 6th Cabazitaxel, exchange will be to something else most probably Xtandi.