Xofigo is very expensive ($70,000 for six doses) and its efficiency is somewhat questionable. It can have some serious side effects, especially if your blood counts are low from previous treatments...For those of us nearing the end of our journeys, having endured many therapies and treatments, is this compound worth the risk and the costs and the side-effects ?
Have any of you been treated with it and did the result meet your expectations ? Did it improve your quality of life ? Did you FEEL better after taking it ? I'm just trying to figure out which of my few remaining options offer me the greatest overall benefit ? Choice #2 is Carboplatin which logisticly is much easier for me to be treated with.....
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Fairwind
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Thanks I’m hoping to get somewhere close to a year without pain like you. Do you know what your next move is? For me I’m thinking about a clinical trial. I’ve burned through the ADT with AR inhibitor (although I’m still on it I’m CR), I did Provenge and now Xofigo. I still have chemo in my quiver too.
I am in a predicament. My PSA was going up and my research doctor had nothing for me. So I did some research and added niacinamide to my xtandi treatment. My last 2 PSA tests were down 9 points each. Now, my research doctor came up with a new drug trial. But my PSA has to be going down.
Do I stay with what I know works or go with the trial.
I’ll read about the OROC-101, haven’t heard about that one yet. I did hear about the niclosamide with xtandi, I think it was for AR-V7. Good luck with your next trial and I’ll keep an eye open for your posts. Thanks for your help.
I don't know what you mean by "its efficacy is somewhat questionable." It has been proved to be safe and effective. It certainly extends life and improves QOL.
In the clinical trial that got xofigo approved, it extended survival an average of 4 months..It had little effect on PSA so that was not used as yardstick to judge efficacy . A significant number were unable to complete the 6 injection protocol and a few died when their blood counts collapsed . Researchers have been able to control that problem (mostly) by more careful monitoring of blood counts especially in men who have low counts from previous treatment..
4 months median survival improvement is as good as it gets - similar survival improvement for chemo, advanced hormonals, Provenge, and I would guess Lu-177-PSMA too. PSA is a poor biomarker for it - but so what? It can't be given to those who are showing a super scan, but for everyone else, there was a significant improvement in pain and QOL. It's really good stuff.
You raise a very good question. after your going thru so much, very tough to make the decision to accept with grace and dignity that one's time is coming to an end.
One of the main reasons why some us actively promote men going on at least one drug trial is not that it will help us, but by our sacrifice, helps others, perhaps your son, who come after us. Although the current regime of medications provide only months, they form the building blocks for what will day become a chronic illness.
It is indeed sad, perhaps criminal that some, make that many of the new drugs are so expensive, but until the government changes how research etc. is being done, including getting involved in pricing-or maybe taking over production and sales, we will continue to see these insane prices to add only months to our lives.
It is long overdue that the FDA be replaced in terms of allowing the earlier release of drugs and shorten the three phase testing protocol of today, i.e. by reducing the costs to researchers to get a drug to market, should result in greatly reduced costs. Again, the current system is resulting in many more deaths a year than need occur.
Small consolation perhaps, but we have made significant strides forward over the past ten or so years, with much more in the pipes. Researchers need our support.
For me (and everyone is different) R-223 reduced my QOL in that it restricted my ability to travel and visit friends and relatives in faraway places..You are locked in to that monthly injection schedule at a single location..With this thread, I was trying to determine if the benefit of the treatment was worth the negative issues associated with it...But be aware, my situation is different than most..
I have been able to take injections meds with me at times-took some doing to get it ok, so you might want to check into that option, i.e. self administered-which MOST guys could do with Lupron, but some might not work that easily. I remember starting when they injected Lupron into muscle-thigh with a much larger needle than the new belly shot, hit a blood vessel one time but overall, it gave me the FREEDOM to have some control and be able to travel.
Xofigo is a completely different animal than Lupron..It's administered by an RO in a controlled environment..No DIY possibilities..I have one more option, Carboplatin.. Some I'm evaluating side-effects and efficiency to make the choice between them..The Carboplatin allows me to travel..
Theranostics Australia gave me 6 doses of Lu177 between 4 Nov 2018 and 2 October 2020. My Psa was 25 before and with help from Xtandi it went to nadir of 0.32 in Nov 2019 after 4 doses. Then Psa went back up to 30 before 2 more doses in July October 2020, and Psa has flatlined at 7.
The last PsMa scan on 4 November 2020 showed less bone mets now than back in July, but new bone mets have appeared that have very low PsMa avidity.
The docs at TA have conferred about whether to continue Lu177 or not and I got an email yesterday saying that they would not give me more Lu177, and that I go back to seek advice from my local oncologist at Canberra Hospital.
He will be fully informed about why no more Lu177 can be given.
It seems to me Ra33 or what is known as Zofigo is available from Bayer Australia from an address in Pymble in Sydney, about a mile from where I grew up.
I looked at requirements for suitability of Ra223, and I have good blood test figures, and am very healthy and able to cycle 200km a week at good speed.
So I know I have only bone mets, and some would respond to Lu177, but new mets won't so docs are saying its pointless to give Lu177 because the new mets will soon all grow big enough cause death soon if nothing can be done, and I have to figure out what might be available.
Ra223 looks maybe OK for me because I have a presently low Psa of only 7, and it would treat the mets that do have medium Psma avidity, and the new mets which have very low PsMa and maybe I get a good response if I begin earlier than men who may have Ra223 when Psa > 100. The same might be said about the chemo drug Carboplatin, but maybe that has worse side effects than Ra223.
I am back to square 1 with my Pca, and the fight has to continue.
Ra223 is said to give mean benefit of 4 months. But I had fairly good response with Lu177 that gave 2 years, where mean benefit was 14 months, and it seems to have eliminated all soft tissue mets.
The FDG PET scan I had in July 2020 showed no mets which did not have PsMa avidity.
PsMa scan also showed same thing. But things have changed, and new mets without PsMa have begun to appear because they have grown big enough to be seen in scans. I was expecting that I could have mets that did not express PsMa because I was diagnosed in 2009 with a Gleason 9, in-operable, so the Pca has had a long time in which to mutate to form different forms of Pca, that now have begun to appear in my bone scans. Anyway, the new mets are all small sized, so not a threat to bone health and strength, and I am pain free, and can work in my yard and cycle etc. So it seems now is the time not to dither, and get Ra223. I could have Carboplatin later, and its nasty chemo which is based in platinum, and worse than Docetaxel which didn't affect my cycling and lung function very much.
My next Scheduled date to talk to local onco is 4 Jan 2021, but I hope that gets brought forward a few weeks to be before Xmas.
So has anyone had Ra223 and lived to tell the tale of what happened?
My husband's xofigo is 50K per dose. We hope to have the 4th dose next week. He has tolerated each treatment. Treatments are close to 5 weeks apart due to the wonky bloodwork.
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