Advanced Prostate Cancer Bone METASTASES

[Janhpr]

I am NEW, my husband has advanced Prostate Cancer with widespread bone metastases PSA 6.8

Want information from UK patients regarding 177 Lu and R223

[Hidden]

I'm guessing you know about this but I'll post anyway for information:

royalmarsden.nhs.uk/royal-m...

[SeosamhM]

If you are willing to share, Janhpr: Is this a new condition for your husband or progression? - Joe M.

[Janhpr in reply to SeosamhM]

First diagnosed in 2008, 1 met to hip until 2018, had all available treatment during this time. Latest 18 -f PSMA PET Scan shows widespread bone metastases

[SeosamhM]

Thanks - in this context, your question makes great sense, especially with the PSMA scan. So I assume these radiochemotherapy (e.g., Ra and Lu) treatments haven't been automatically offered...or they've been offered without context?

[Janhpr in reply to SeosamhM]

Hi Had 20 treatments of Radiotherapy in 2019, PSA Started rising September 2021 offered further chemotherapy, last resort for us.

Oncologist has made a Referral for R223 on NHS, bloods tomorrow and appointment 9th February.

Saw Professor 1st February who Tony had been under on previous trial, he is now at Royal Marsden London went to discuss 177 Lu, not available on NHS so waiting for costings.

Prof offered us a new trial, a kind of immune treatment, no proven history/outcome, Other than that have to attend weekly for intravenous infusion, traveling to London would be an issue, we went by taxi cost £400 took 12 hours round trip, I don’t think my husband would cope with the travel once a week after having treatment.

Kind Regards Jan

[NickJoy]

Hi Jan - do you mind letting me know which Prof you have? I would be interested to hear about the trial. Where are you based? Any trials closer to home?

[Janhpr in reply to NickJoy]

Hi NickJoy, The trial email contact is [e-mail] title: PRO-MERIT.

[NickJoy in reply to Janhpr]

Thank you Jan. You probably already know but you can obtain Lu 177 in India from Dr Sen at a good price but thought I would mention it just in case. I think it is close to hotel etc. Some members here have had a positive experience of going there and Dr Sen is very approachable if you email her.

[NickJoy in reply to Janhpr]

Jan - I don't know if it is any help to you but they are running the promerit trial in Velindre, Cardiff. Alot closer to you than London but of course the Marsden is a much better research hospital .

[Janhpr in reply to NickJoy]

Will follow that up many thanks

[SeosamhM]

Zounds. You and yours are certainly in a tough spot with being so remote from treatment, Jan! While I cannot speak directly to UK experience (I am in US), I can tell you that the Radium 223 is a "standard-of-care" for bone metastases, and if the PSMA scan is only showing new mets in bone (and not elsewhere), Ra 223 (known most places as Xofigo) is a straightforward treatment in Tony's instance (see: cancerresearchuk.org/about-....

Lutetium (Lu) 177 is in the approval process here in the US and not yet widely available - many members here on the forum have actually traveled to Germany for it at some significant personal cost. The main difference between Lu 177-PSMA and Ra 223 is that radioactive radium is similar to calcium and will naturally be taken up by tissues that take up calcium (like bone and bone mets). Lu 177 is sort of an "artificially-designed" treatment that combines radioactive Lu 177 with PSMA molecules so that this treatment bonds to any mets that showed up in a PSMA scan - so bone and more.

Xofigo has been available through the NHS since late 2016, and there are around 17 -20 oncology centres in the UK participating in the "National Radium-223 Dichloride Audit Group." So I would hope there would be a centre for Xofigo treatment much, much closer than a 12-hour grind to and from London! Ask your provider! Good luck. - Joe M.

[Janhpr in reply to SeosamhM]

Many thanks for this information and explains the difference between treatments, have got a referral for R223 at a hospital in a town just an 1 hour from us, much better than going to London from what you described R223 is ver efficient in zapping bone mets. Husbands PSA 6.8 so not outrageous.

[SeosamhM in reply to Janhpr]

Yah - "thankfully" your husband's cancer is like mine, and seems to be "only" bone mets at this point, and Ra223 now doesn't rule out Lu177 down the line... like we want either!

[Janhpr]

Thanks for your reply we live in a rural village in Shropshire UK. Specialist hospitals mostly in London 3.5+ hours away depending on traffic and congestion in London, trains unreliable. we had a referral on the 1st Feb Royal Marsden Hospital, went by Taxi, 11 hours round trip.

Offered a new trial while we were there, would have to go weekly for infusions and might have to stay overnight, don’t think this is for my husband, at this stage need treatment that has a track record

We have a referral on the NHS for R223 appointment 9th February at a hospital 1 hour from us., have you had R223. We think the best option is 177 Lu, showing such good results, waiting for private costings .

I know some people are going abroad but I don’t think my husband could cope with the treatment and the travel. 14 years since diagnosis, both of us now 78yrs, all the treatments have taken it’s toll, mentally and physically.

[SeosamhM]

I haven't had either treatment yet - but while I can't say when, the choice looms for me someday (54 now, 5 1/2 years in). I think you understand this well and I cannot disagree with your conclusion that Lu 177 is best if one is chosen (all of these infernal treatments take a toll!) since it hopefully gets any unseen soft tissue mets, too.

I am somewhat familiar with the West Midlands: Great-grandad was from Staffordshire! I haven't been there since the late 1990s when I was young and thought I was in love... Cheers!

[Janhpr]

Hope that you have years before you have to make these choices. We lived in Staffordshire during the 70’s, glad you have good memories. Shropshire where we live now is similar possibly more rural and mountainous as we are quite near the Welsh borders, I wish you well

[ishitasen]

Please share your husband's detailed clinical history and imaging reports. What are the different types of treatment he has received so far?

Regarding Lu-177

Generally, cancer cells from the prostate express the prostate-specific membrane antigen (PSMA) protein on the cell surface. This membrane antigen serves as a target for certain peptides, so-called PSMA ligands (PSMA-DKFZ-617), which can be radiolabeled with therapeutic radioisotopes like the beta emitter Lu-177 (Lu-177-PSMA-DKFZ-617) or the alpha emitter Ac225 to deliver high dose targeted radiation to the tumour sites. This process is called radioligand therapy (RLT).

The therapeutic molecule is administered intravenously. It specifically seeks out and binds to the PSMA receptors on the tumor cells, and emits local radiation which leads to targeted irradiation of the malignant cells, leading to the cell death. Since the molecule only binds to the tumour cells and since the penetration of the radioactive particles in tissue is only a fraction of a millimeter, the normal tissue around the tumour cells is not damaged, hence this therapy is often called magic bullet therapy.

Various clinical studies show that RLT reduces tumor growth or substantially decreases tumor volume in the majority of cases. The therapy can also reduce pain and PSA values and improve the quality of life.

Typically 3 - 4 doses of lu177 PSMA therapy are administered at intervals of 8 weeks. The injection itself takes about 10 minutes to administer. We hydrate the patient intravenously and the entire procedure can be done as a daycare short admission procedure. We source our non carrier added lu177 from ITM Germany which is approved by both the European and Indian pharmacopia.

Lu177 psma therapy is very well tolerated. There may be some fatigue in the immediate post-infusion period. Some patients complain of some nausea and loss of appetite for the first week or so after the injection. There may be some lowering of the red blood cells after a few weeks but the lowering is usually not substantial to need any definite therapy. It usually reverses by itself. The principal adverse effect is xerostomia or dry mouth. Usually, the dry mouth increases with consecutive doses, and some of it is irreversible. There is usually about 5- 10 % reduction in salivary gland function.

Lu 177 psma therapy is effective in producing a reduction in the tumor sizes and consequently a reduction in PSA levels in about 75 - 80% patients. The duration of response is usually about 1 year, however, there are a substantial number of patients who tend to remain in good response for longer.

Each dose of lu177 psma therapy costs about 6000 USD. This includes the cost of hospitalisation, medicine costs, consults, and the interim PSMA PET CT scans. etc.