Running out of options: Hi My husband... - Advanced Prostate...

Advanced Prostate Cancer

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Running out of options

Mac59 profile image
36 Replies

Hi

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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36 Replies
Magnus1964 profile image
Magnus1964

You didn't mention xtandi. it is an option.

Mac59 profile image
Mac59 in reply toMagnus1964

Hi

He has had xtandi . He’s had almost everything except Cabazitaxel. The other option Oncologist said was Lu177 and maybe Immunotherapy

RyderLake2 profile image
RyderLake2

Hello,

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.

Mac59 profile image
Mac59 in reply toRyderLake2

Thank you. We are in Australia. Queensland. Townsville. Small rural town of about 180 k people.

Alvin735 profile image
Alvin735

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?

Mac59 profile image
Mac59 in reply toAlvin735

Hi Alvin

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.

paige20180 profile image
paige20180

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.

Mac59 profile image
Mac59 in reply topaige20180

Hi Paige

Thanks but we are in Australia. I will look up the readings, thank you.

Pleroma profile image
Pleroma

Is that Townsville, Australia or USA?

Mac59 profile image
Mac59 in reply toPleroma

Townsville Australia

Dachshundlove profile image
Dachshundlove

It sounds like your MO is perhaps running out of ideas. Getting another opinion is advisable.

Good luck to both of you—

Mac59 profile image
Mac59 in reply toDachshundlove

Thanks very much. Will do

Tall_Allen profile image
Tall_Allen

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.

Mac59 profile image
Mac59 in reply toTall_Allen

Hi Tall Allen

Thanks very much for that contact. Will certainly look into that. Will get a referral to see him. Thanks

Kaliber profile image
Kaliber

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.

Wishing the best for you 💪💪💪🌼🦋🌻🌸

Mac59 profile image
Mac59 in reply toKaliber

Hi Kaliber

Thanks for the encouraging words. It is certainly a challenging time. Must stay positive. Tjanks

j-o-h-n profile image
j-o-h-n in reply toKaliber

That was nice.......... 🥇🥇🥇

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/28/2020 6:30 PM EST

Kaliber profile image
Kaliber in reply toj-o-h-n

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

Just say’in ...😁😁😁😁😁🌸🌻🌼🦋

j-o-h-n profile image
j-o-h-n in reply toKaliber

And Bro, you just ain't whistling Dixie .........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/28/2020 11:14 PM EST

Mac59 profile image
Mac59 in reply toKaliber

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.

Kaliber profile image
Kaliber in reply toMac59

💪💪💪💪 ✌️✌️✌️🦋🌸🌼🌻

RalphieJr64 profile image
RalphieJr64 in reply toKaliber

Thank you. That was something I needed.

Mac59 profile image
Mac59

Townsville Australia

Grumpyswife profile image
Grumpyswife

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.

Poppi07 profile image
Poppi07

Hi there

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!

Mac59 profile image
Mac59 in reply toPoppi07

Hi

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.

Chugach profile image
Chugach

Try genetic testing to see if he may qualify for immunotherapy such as Pembrolizumab

Poppi07 profile image
Poppi07

Hi

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!

Mac59 profile image
Mac59 in reply toPoppi07

Thank you very much. We will discuss this with the oncologist and try all the options that we are eligible for. Thanks again.

kaptank profile image
kaptank

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.

Mac59 profile image
Mac59 in reply tokaptank

Thank you so much for the information. Will certainly look into all of that. Appreciate your support

Poppi07 profile image
Poppi07

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.

Mac59 profile image
Mac59 in reply toPoppi07

Thank you. Will look into everything we can. Hopefully it is successful for many.

Jbooml profile image
Jbooml

Since you’re fairly closeby you might give these guys a call

Steve

Cancer Nurse – Cancer Council 13 11 20

Cancer Information and Support Service

T: 13 11 20

615 St Kilda Rd, Melbourne Vic 3004 Australia

cancervic.org.au

Prevent Cancer. Empower Patients. Save Lives.

They’re conducting cowpox trials

Bigdo58 profile image
Bigdo58

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.

Bigdo58 profile image
Bigdo58

Sorry, just noted these threads are 4 years old. Hope Mac59 is still with us.

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