My husband has advanced stage 4 MCRPC. He has now been told that there is no treatment left for him which has good percentage to work. He has had Docetaxel, all the hormone treatments, radiation and most of the injections. He has been on Zytiga and Abiraterone, plus steroids. Oncologist is looking into Immune therapy and has also offered the last chemotherapy available. Percentage is between 10-25 % effective. So not great odds. Oncologist said to try and find trials. Does anyone know if the Lutetium 77 trial is running anywhere? We are in Townsville. Looking for something that may work. Husband is Gleason 9 and got diagnosed 6 years ago. Had RP then. Since all treatment stopped 4 weeks ago. PSA has gone from 3- 32 in 4 weeks. Need help to find if there is anything to slow this cancer down. Thanks
Loving wife. Jill
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Mac59
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You might want to try one of the Lutetium trials in Canada and the USA. Another option is to go to Germany or Australia where Lutetium is far more mainstream.
I maybe reading this wrong, but did your onocologist tell YOU to find a trial? If so, I might suggest trying to find a new Onocologist! Has your husband had genetic testing? Lu-177 maybe a possibility - but do the scan first to see if your cancer will respond to it. If genetic testing has been done and he is BRCA 2 or another mutation, Lynparza might be a possibility. What "latest" chemo has the doctor suggested?
Yes they told us to see if we could find something else. We have been to Brisbane and seen a different specialist a few years ago but he wasn’t eligible for any trials at the time. Did have genetic testing done but it was no good.
We are hoping to be able to get in the Lu177 wherever it may be in Australia
Chemo they want to try is Cabazitaxel but oncologist says it’s only got about 20 % chance of being effective.
I think Townville is in SC? I would find another doctor. We have been very happy with Dr Kwon at Mayo Clinic MN. Maybe make a trip to Hopkins?
When I get very afraid for my husband. I read "How Todd Seals Overcame a Prostate Cancer Death Sentence". The article was in Mens Health. Todd never gave up and his doctors were remarkable. Best wishes.
Townsville Australia? If you don't mind the trek to Melbourne, you might want to talk to Michael Hoffman at the Peter McCallum Cancer Center. He's working on some interesting Lu-177-PSMA combination therapies.
Hi loving wife Jill. My friend Mark ( Urang on this group ) has been fighting PCa for well over 22 years and endured every treatment from the brutal Midieval treatments of 20 years ago , right up to the more advanced and kinder treatments of modern times. He too has been out of options for some long time and his psa running 250 -350 or so. He had been doing pretty well, very mobile ... working in yard, driving into town etc.
He’s had spinal met issues for many years and just recently a spinal met ate into his spine and got a nerve. He had pain that nothing touched and got radiation to kill the met. Unfortunately he is paralyzed from the waist down now .... and even thru “ all that “ he is quite likely to live for many more years. Many disabled persons have similar difficulties and learn to cope with the disability and move on in life quite well.
The point is that , even with seemingly the worse PCa circumstances, options exhausted.... still hanging in there happens and can remain that way for quite a very long time. It’s not all bad and new treatments come along quite often these days.
Cheer up ... things might seem bad , and not say’in they aren’t but positive possibilities still exist.
It’s easy to get overwhelmed in this mess , but there is nearly always some glimmer of light shinning around someplace. No need to give up or focus too much on despair when some positive elements still remain. You aren’t gone until the lights actually go out , period, in the meantime there’s time for popcorn, a couple of beers and a streaming movie rental. Long as you can just prop yourself up on one damn elbow and sip some exotic jamblu coffee and eat a warm soft cinnamon roll ... even that can be a win of sorts. Those little glimmers of light shine ever so much brighter when the darkness seems to be everywhere. Waste not want not brother !!! Yayahahahaya
Thanks Kaliber. Really appreciate the encouraging and motivating words. We are not the quitting kind so every day is a blessing and we try very hard to look for the positives in everything we do. Looking for other treatments now so certainly not giving up!! We will keep fighting til the fat lady sings. Thanks again.
Another Aussie on here named Patrick has gone through Lutium treatments in Australia and I believe he has posted recently that they have been successful for him. His posts are full of information that may be helpful to you and/or you could private message him. He also has a website about his prostate cancer journey.
The treatment city may be far from where you live but at least you are in a good country that is a leader in this treatment.
We are in cairns! Dad has similar situation. Have you been offered radium 223/ Xofigo? We will also look into the lu177 treatment later on. We had a referral to dr goh in Brisbane to do the pet scan to see if you are a candidate otherwise peter Mac centre in Melbourne. Also might to look into genomic testing to see if another treatment might be helpful. We are also embarking on joe tippens and Jane mclelland protocols. All the best!
Thanks so much for the info. We are getting a referral to go and see DrGoh in Brisbane at some stage soon I hope to see if my husband is a candidate for anything. Hopefully it’s Lu177 as I have heard good things about it. I haven’t heard of those other protocols you mentioned.
I would ask your oncologist about Xofigo but my understanding is lu177 is having better results. Keep in mind both these treatments require out of pocket expense.. if you are on Facebook look at mycancerstoryrocks and Jane mclleland off label drugs. I’m not sure how many people with PCa are having success with it but we are giving it a go. Also my understanding is that you can rechallenge the Zytiga and xandti as well as chemo options if they were previously helpful. There is some really helpful information on this forum to help you stay informed. Keep in touch and let us know how you go!
Lu177PSMA - you will need a Ga68PSMA scan first to check the cancer is PSMA avid and to find out where it is. There are a few places in Sydney that do it. No 1 is St Vincents hospital and they and Peter Mac do most of the trials. I don't have any names but your Brisbane doc probably will. There are a couple of private providers (expensive) - I am unsure of the status of Lu177PSMA in the Australian healthcare system but I do know the Ga68PSMA scan is not covered and costs about A$750. So Lupsma isprobably horrendously expensive if not in a trial.
Theranostics Australia, which do the procedure at Maquarie university hospital.
Genesis Care which do it at The Mater hospital in North Sydney
Google the two companies, there's a fair bit of useful info on their websites.
St Vincents and Peter Mac are world standard and the place to find out about trials.
The clinical trial at the Peter Mac centre with dr Emmett looks promising and something I hope we can consider later on. I believe Patrick on this forum has good insight into this type of treatment and perhaps he can guide us further around these treatments.
I see you are in Townsville, presume Qld, Oz. I think your only avenue is Pluvicto (Lutetium 177). As far as I am aware, and I am facing this, next 6 - 12 months...can only get it St Vincents Sydney or via trials PeterMac Melbourne - contact Prof Declan Murphy there. 6 doses....minimum 60k unless you get a trial. Tell me how you get on.
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