Looking for peoples experience of Rad... - Advanced Prostate...

Advanced Prostate Cancer

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Looking for peoples experience of Radium 233 and Cabazitaxel.

Teddysdad profile image
24 Replies

Just looking for people's experience and thoughts.

My background is, age 58, diagnosed 2 years ago with advanced prostate cancer, Gleason 9, psa 226.

I am on Prostap Hormone Therapy, had Docetaxel chemo Jan to Apr 2017.

At end of chemo PSA was 1.6 but slowly started to rise.

On Enzalutimde from Aug 17 to June 18.

July 18 started on immunotherapy trial called Neptunes.

PSA now 51 up from 33 last month.

Looks like immunotherapy is not working as signs of disease progression.

Next step likely to be either Radium 233 or Cabazitaxel (Jevtana).

There was mention of a trial called Lutetium but that does not open for a few months and is randomised.

So just looking to hear peoples experience of either Radium 233 or Cabazitaxel to help with the decision making.

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Teddysdad
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24 Replies
GP24 profile image
GP24

Radium 233 or Cabazitaxel (Jevtana) have very significant side effects. I would wait for the Lutetium trial or get that treatment done in Germany.

Teddysdad profile image
Teddysdad in reply toGP24

Thank you for raising the point zbout side effects, they are an important consideration as I have a holiday booked late Feb.

I breezed through Docetaxel so are these worse?

Does Germany offer other treatment options?

GP24 profile image
GP24 in reply toTeddysdad

Usually people do not breeze through Docetaxel. I would start after your holiday, chances are that the side effects will spoil that.

The Lutetium trial will cause fewer side effects, I would prefer that over Radium 233 or Cabazitaxel. However, you will be randomised. If you do not want that, you have to get the treatment in Germany where it is offered by several hospitals outside of trials. However, I doubt the NHS will pay that for you.

Teddysdad profile image
Teddysdad in reply toGP24

Thanks, this is all useful information. If a good treatment option were available in Germany I maybe able to fund it, I pretty much thought that most countries had the same or similar treatment options.

Tall_Allen profile image
Tall_Allen in reply toTeddysdad

If you decide to go to Germany, they are also testing another radiopharmaceutical there that may be even better (Ac-225-PSMA-617). In fact, they are experimenting with combining the two.

pcnrv.blogspot.com/2016/12/...

GP24 profile image
GP24 in reply toTeddysdad

The Lutetium 177 or PSMA PRLT therapy was developed in Germany, so this time Germany is ahead regarding this therapy. I compiled a list which shows mainly university clinics which offer PSMA therapy. Outside the guidelines, however. This list is not complete. These pages are in German and I guess it can be quite some effort to finally get the treatment done.

In the following clinic they made the observation that you better have a Lutetium 177 therapy before chemo or Radium 223:

snmmi.org/NewsPublications/...

But in Germany the general recommendation is also, to use Lutetium 177 as the last resort. This because there have been no long term trials yet.

As Allan mentioned, in Germany they use Actinium 225 too or combined with Lu177. This may not be available at many clinics in this list. This Ac-225 is usually applied when there are bone mets.

In all this will not cure you but could extend overall survival more than a Chemo would.

-------------------------------------------------------------------

Uniklinik Bonn

nuklearmedizin-ukbonn.de/st...

Uniklinik Essen

nuklearmedizin.uk-essen.de/...

Uniklinik Frankfurt

kgu.de/einrichtungen/klinik...

Uniklinik Freiburg

ims.uniklinik-freiburg.de/e...

MH Hannover

mh-hannover.de/35250.html

mh-hannover.de/ips.html?&L=1

Uniklinik Heidelberg

klinikum.uni-heidelberg.de/...

Uniklinik Homburg/Saar

uniklinikum-saarland.de/ein...

Uniklinik Köln

nuklearmedizin.uk-koeln.de/...

nuklearmedizin.uk-koeln.de/...

LMU München

klinikum.uni-muenchen.de/Kl...

klinikum.uni-muenchen.de/In...

TU München

nuk.mri.tum.de/177lu-psma-b...

mri.tum.de/node/5909

Uniklinik Regensburg

ukw.de/nuklearmedizin/start...

ukr.de/e/departments/nuclea...

Zentralklinik Bad Berka

psmainfo.org/

Teddysdad profile image
Teddysdad in reply toGP24

Wow, that's a great piece of work, I need to digest it but thank you so much.

Tall_Allen profile image
Tall_Allen in reply toGP24

Your statement "In all this will not cure you but could extend overall survival more than a Chemo would." does not seem to be supported by the data at hand. What it says is: "Patients previously treated with chemotherapy had a significantly shorter survival (median of 19 months). Survival was also shorter in patients with previous radium-223 (223Ra) treatment (17 months)." This was an observational study, not a randomized trial. I attribute this observation to the fact that the more heavily pretreated patients were the more progressed/sicker patients at the time of therapy. It does NOT in any way imply that it should be first in patients who are in an equivalent state of progression.

GP24 profile image
GP24 in reply toTall_Allen

Yes, it is just an observational study and therefore I wrote: "they made the observation".

The_Don5 profile image
The_Don5 in reply toTall_Allen

"I attribute this observation to the fact that the more heavily pretreated patients were the more progressed/sicker patients at the time of therapy."

What about patients who tried LU-177 but were unfit to try Chemo in the first instance?

MontyB profile image
MontyB

I had Radium 223 a few months ago...three cycles of the planned six. It did not work for me so my MO switched me to something else. Was a great surprise that it did not work.

GP24 profile image
GP24 in reply toMontyB

Monty, how did you determine that Radium 223 did not work?

MontyB profile image
MontyB in reply toGP24

My MO determined it wasn't working from the scans I had after cycle three. The bone scan showed continuing met growth. Was a big disappointing surprise as I was sure it would work.

Teddysdad profile image
Teddysdad in reply toMontyB

Sorry to hear your news, sounds like we have similar situations. What treatment are you on now and what future treatment might you have?

MontyB profile image
MontyB in reply toTeddysdad

Hello Teddysdad,

I am sorry to hear you have the same situation. My MO suggested a trial would offer the best treatment option for me after the Radium 223. Can't say if it is working or not yet. I was told it would be cycle 5 before I would know. I start cycle 3 on the 15th.

Info about it:

mdanderson.org/patients-fam...

Take Care,

Monty

Tall_Allen profile image
Tall_Allen

I'm sorry the NEPTUNE trial did nothing for you. I was hopeful that combining two different kinds of checkpoint inhibitors might succeed while each failed individually. Immunotherapies have so far been very disappointing for prostate cancer.

I haven't done either, but they are both good choices. Ra-223 is a powerful alpha emitter with affinity to bone mets. Lu-177-PSMA-617 is a weaker beta-emitter, but is non-specific for bone mets. Here's a comparison:

pcnrv.blogspot.com/2016/08/...

I've talked to patients who found Cabazitaxel milder in terms of side effects than docetaxel, but some found it worse. It's very dependent on the individual.

Perhaps either of them may work better now that you've had immunotherapy.

If you are in the UK, this says that the VISION trial of Lu-177-PSMA-617 HAS begun recruiting there. But it is randomized 2:1. They prefer TWO taxane treatments, so you may be better off trying Cabazitaxel before signing up. If you are randomized to not get the drug, you can still get Xofigo, since it is standard-of-care. It seems you have nothing to lose and you may possibly get another treatment if you do Cabazitaxel first.:

clinicaltrials.gov/ct2/show...

Teddysdad profile image
Teddysdad in reply toTall_Allen

Thanks for all, very useful, I will do some reading up on the links and prepare my questions for my oncologist.

Once again thanks.

Bebby1 profile image
Bebby1

Hi

My husband is 60

Diagnosed 12 months ago

Gleason 10

Stage 4

Multiple Mets and lymph involvement

Commenced docetaxal

Only managed two of six treatments due to constant sepsis emergencies

Cosudex oral hormone in conjunction with 3 monthly zoladex held psa for seven months

Now psa risen

Stopped hormone ( oral)

Now has bad back pain

Waiting for phone call re “ spot welding”

Which equates to spot radiotherapy

Next up will be trials

If docetaxal course was completed he would be still well

All the best

Dbethune profile image
Dbethune

Strongly suggest you consider German treatment. My dx was June 2017 - psa 143. Had ADT and six taxane treatments winter 2017/2018. PSA down to 20, Zytiga for short while brought me to PSA 8.0 but stopped as recommended by Heidelberg when I was approved for treatment. 3 x Lutetium/ Actinium combination every 8 weeks - no side effects at all - slight dry mouth but not much. PSA last week 0.5. Overall treatment cost was ca €28,000.

ellyras profile image
ellyras in reply toDbethune

I am considering Heidelberg. Any information on how to get on their programme greatly appreciated. Was 28,000 total cost? Thanks in advance

Dbethune profile image
Dbethune in reply toellyras

28k was for testing and three rounds of treatment. 12k fit first test/ treatment then about 8k each fir the other two. If u go to the hospital web site and follow links you’ll find the international site where you can upload documents and apply for treatment

The_Don5 profile image
The_Don5 in reply toDbethune

Miguel stated a day ago he was told by heidleberg to continue zytiga whilst commencing Lu-177?

NNKVa profile image
NNKVa in reply toDbethune

overall was 28.000euros thats great we were quoted 25.779 euros by bookhealth for one treatment.

paulparry profile image
paulparry

Surely a 2nd round of Docataxel is better than Cabazitaxel as it is far stronger.

You can then have Cabazitaxel later. Radium223 should prob be kept until bone mets dictate you need it. Radiotherapy provides immediate pain relief before 223 is your option.

LU177 may have been authorised in UK and US by then.

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