RADIUM223 TREATMENT OPTION? What’s your experience or knowledge please share..

[MyWifeMyLife]

Hi all, just wondering what your experience was or is for the Radium223 for PCA Mets in my bone only? Try or no?

Thanks! Hope All is well with you fighters out there!

[LearnAll]

Radium 223 treatment Do Not increase length of survival in PCa. This treatment is mainly used to control pain coming from bone mets. Most studies make this conclusion BUT a few studies say that IF USED EARLY in CRPC cases, Radium223 can have some survival benefit.

[MyWifeMyLife in reply to LearnAll]

That’s interesting 🤔 thanks I think..😉

[GP24]

This article reports survival benefits:

prostatecancer.net/clinical...

The FDA approved Xofigo because it showed a survival benefit. The PSA value will not decrease while it destroys the bone mets.

[LearnAll in reply to GP24]

This article seems like a marketing ploy for Radium223...Why don't you quote some real research papers...Most of the real research do not think Radium 223 has any significant survival benefit.

[GP24 in reply to LearnAll]

The article is easy to read and not wrong. Here is a study showing overall survival for Xofigo: nejm.org/doi/full/10.1056/n...

Now it is your turn to present a study, which shows no survival benefit for Xofigo 🙂 Xgeva, by the way, could not show an increase in overall survival.

[LearnAll in reply to GP24]

GP24, You are right. That was an old study I read. I read a dozen new studies today. Most Newer studies are concluding that there is some survival advantage with Radium 223. Thanks for pointing out this .

[AlanMeyer in reply to LearnAll]

I don't keep a database of study references and I'm not able to offer documentation for this, but it is my understanding that Radium223 / Xofigo only treats cancer in the bones, not in soft tissue (brain, liver, lungs, heart, etc.) It will extend survival if the leading threat to life is cancer in the bones. If prostate cancer in the bones is less of a threat than, for example, cancer in the lungs, then taking Xofigo can help reduce bone pain but it won't extend life.

If that's right then the answer to the question of whether Xofigo will extend life is - it depends on where the most dangerous metastases are located in the particular patient. Some patients with bad bone cancer but no soft tissue metastases could get significant life extension.

Alan

[Patrick-Turner in reply to AlanMeyer]

I think I would benefit with Ra223 now or early next year. Between Nov 2018 and Oct 2020, I had 6 doses of Lu177 and Psa before was 25, and it dropped to 0.32 at Nov 2019 while also taking Xtandi. But Psa went back up to 30 in July 2020, so I had two more doses of Lu177 and took Veyonda and stayed on Xtandi to boost PsMa expression, and Psa has flatlined at 7.6. Docs said I had no soft tissue mets because successive PsMa scan showed none and FDG PET scan last July was negative.

But remaining mets in bones are not yet causing any pain and are still small size, but have SUV between 1.6 and 10.6, so docs said more Lu177 would probably not work well because the mets with low SUV will not be zapped.

Docs giving Lu177 did not advocate use of Ra223, or offer it, and they refused to give me more Lu177.

All my blood tests are fine, although high blood pressure has now been found despite me having extremely good fitness by cycling 200km+ each week.

Ra223 acts differently to Lu177 which depends on a targeting ligand chemical.

Ra223 replaces calcium where there is high calcium turnover at met sites, so it should go to tiny bone mets and the bigger ones seen in scans, and because most of my bone mets are small, there's less work to do for the Ra223, and perhaps the bone strength will be maintained in areas where that is needed.

The problem with bone cancer is that its harder to treat than many other cancers, maybe because the blood vessels don't circulate as much blood in bones as elsewhere.

It was once stated that men with Psa had 95% mortality rate at 5 years after first mets were found in bones. My first mets were found in mid 2017, so theoretically I'll be dead in mid 2022, but then PsMa scans showed bone mets 2 years earlier than CT scans, so maybe I die in 2024. But the Ra223 might kill a big pile of small mets and big ones no matter what the PsMa expression is, and the date of death might be postponed to some later date, maybe years later.

And EBRT + IMRT might used to assist in the process. But Ra223 will cost me about usd $10,000 per dose, and I have heard of some men having 6 doses. The 6 doses of Lu177 cost about usd $42,000, and I am used to paying $$$ to stay alive.

If I don't get Ra223, its always possible Pca will spread from active bone mets back into soft tissue, and it may have already begun to do that. None of this has yet to be seen in scans, but I will not be surprised if that is what I do see at some time, and that may be non-treatable by any known chemo or anything else.

In the years ahead, some new treatment might help us all get more life time.

But I have survived since 2009 diagnosis which was 4 years too late because Psa threshold is 5.0 for diagnosis action and my Psa was 5.0, but this was a very low Psa for my Pca which was much advanced in 2009 and I had a Gleason score of 9, and it was inoperable.

So I should have had biopsy in 2004 or whenever Psa was just below 3, which could have been years before 2004, and I had regular Psa tests for 10 years before 2009, and Psa was never less than 2.5. The docs all said I was fine because Psa was low, and doubling rate was slow.

Doctors quite often just don't know what they are talking about and for men with lowest chance of ever having prostate troubles have Psa 0.7 at 40, and 1.0 at 60, and I have a cousin with Psa 1.2 at 75, but he does have BPH, and he does not like talking about his PG to me. He has other problems though, and who gets to 75 without problems? If it is not one thing, its another, maybe 4 other things, and death can be delayed by doctors by quite a long time or only a short time depending on what problems exist. But none of us can live forever, and I just might make it to 75, which is much more than life expectancy 100 years ago, or 1,000 years ago.

Its quite a nice summer day here today.

Patrick Turner.

[AlanMeyer in reply to Patrick-Turner]

Hello Patrick,

It sounds like you and your doctors have done an excellent job of combating your cancer. You've gone eleven years since the diagnosis of a very aggressive cancer and are still holding down the metastases.

Looking up prices for Xofigo (U.S. brand name for Radium-223) in the United States, I see that they are really, really high. I'm not 100% surprised because nuclear medicine requires very advanced facilities to produce the isotopes. Radium 223 has a half-life of 11.4 days, so it can't be stored very long and long distance transport can use up a lot of its high potency time. It has to be produced and used pretty quickly in order to give full potency.

Do you know if the docs who treated you with Lu-177 refused to do Radium-223 because they didn't think it was the right thing to do for your case? Or was it because they don't have the facilities to acquire or produce the required isotope, so they couldn't treat you with it even if they wanted to?

I looked at your last posting to the group ("Worst 11 days in hospital I ever had") and apart from the worst days problem, what really struck me about your posting was the 127,000 kilometers cycling since 2006. I can't help wondering about the extent to which your exercise regimen has contributed to your longevity. For a guy with aggressive, metastatic PCa for 11 years who has not yet blown through all of the available treatments, it sounds to me like you're doing really well. And you're not just holding off death, you're also living a pretty active life, probably better than a lot of guys your age who don't have cancer but couldn't do what you're doing.

I don't have any advice for you about Radium-223. Your radiation and medical oncologists will, hopefully, know a lot more about it than I do, but I do think you're doing a fine job of holding your own against the cancer. I'm hoping you'll get the five years that the old statistics predicted, plus five years more, and maybe even five more after that. If you do - fantastic. If you don't, well, at least you'll be living the life you do have to the full. That's something that all of us have to try to do.

Best of luck.

Alan

[Patrick-Turner in reply to AlanMeyer]

I see my local onco on 4 Jan, and I'll be asking for Ra223. The ninth PsMa scan after 6 shots Lu177 showed no soft tissue mets, but bone mets with range of SUV between 1.6 and 10.6, and Theranostics Australia thought more Lu177 would not help me much because of the mets with low SUV. OK, so I have only bone cancer. Ra223 does not need PsMa to be targeted and works to replace calcium traffic at met sites, so it seems logical to get Ra223. I am not too afraid of radioactive medicines, because the amounts they give are so tiny, and although chance of leukemia goes higher, it may take 10 years before I got that, and that's a risk I have to take.

For a young person, these radioactive drugs and any X-ray RT would be big concern, but I probably have few options now, and anything such as say Cabazitaxel + Carboplatin is likely to not work because with slow growing Pca, the chemo only works while its in your body for a week, then for next two weeks Pca grows again, so this seems to be why chemo can't control or kill many cancers.

My sister had chemo for her ovarian cancer, and after each dose her blood numbers looked better, but once the chemo ceased in weeks before next dose, her cancer grew and grew, 6 months she lost the fight and had so many mets in her stomach she could not eat, and went to hospice where she got morphine drip that eased her pain and fears but then self administered so much morphine from drip she overdosed and died unconscious and of heart failure, and alone.

So I have seen those where chemo just fails to stop ppl dying.

Despite cycling 200km a week since 2006, my blood pressure has gone up and could be 200 / 80 while typing to you, while HR may be only 45.

I have a lot of hypotension where I get dizzy after sitting at laptop then standing, or after getting out of car having driven a few km to a cafe for lunch. The hypo has been going on for ever since soon after I began ADT, and at moment I think high BP is being caused by long term use of Xtandi even though there is no evidence its doing anything at all after 20 months since I began taking it. It may even be having some opposite effect to what it was designed to do. A friend who died from Pca last year had Cosadex that is similar to Xtandi and his Pca rapidly increased with Cosadex.

Well, my Psa is now about 7.6, and down a bit since before my last Lu177 on Oct 2 this year, but Psa has bad habit of going up.

So whatever treatment I get soon, its all going to be experimental with no predictable outcome. But local doc wants me to take pills for BP, and he lent me a BP measuring gadget so I'm taking doing BP test up to 10 times a day, and BP goes high when sitting down, but tends to go lower with exercise, but I can't ride a bicycle for 24 hours a day.

I have stopped taking Xtandi since last Friday and maybe I see lower BP, but side effects of Xtandi can last for months after quitting it, and same thing happened with Zytiga that had worse side effects on my heart rate. HR got better within 2 months and during chemo that followed, which had no effect on Pca.

I'm getting old, and high BP is a very common condition in ppl who are otherwise quite healthy, and yet many are unaware they have high BP until they have a heart attack, so I have to try to keep BP under control and maybe a feel a bit better as well.

I can still cycle quite fast, and of course once you warm up and get going, the body dilates blood vessels to allow easy blood flow, and my HR sits on about 75 during a ride, up from 45 resting, yet BP is lower, so while inactive, just sitting around, it seems heart has to struggle to get blood to flow, and I can only hope doc knows what pills to give me.

But its quite a nice mild early summer day here, so different to last year where we had raging bushfires after years of drought, and many days 40C, and had to wear masks because of the smoke.

C19 has broken out in NSW again but where I am in Canberra in ACT things look OK,

but the pandemic is just not over yet. I have practiced "social distancing" for last 42 years since a young wife went beserko and left town. Ever since then I was reticent about all other ppl, and getting entangled without betterment of their life or mine, so I don't need to be told to stop going to pubs, clubs, or travelling and its highly unlikely I'd get C19 by cycling around alone where there has not been a C19 case for months.

Try to stay well,

Patrick Turner.

[MyWifeMyLife in reply to Patrick-Turner]

Hi Patrick, thanks for your story. Tough road huh? I find your opinion and/probably fact of the chemo combo acts for only 1 week then not much or zero for 2 weeks afterwards, that’s sad. Also you saw several friends experience horrible endings. I’m so sorry to hear that. I also have high b/p but it was Dx in childhood actually. Keep up with the b/p meds..if you do not like the side effects of one then ask doc to switch, there’s plenty available in the arsenal. Good luck and best of health to you, we just never know what mix may be the winner. Don’t ever give in!To our health!

Jeff

[Patrick-Turner in reply to MyWifeMyLife]

I'll probably know when to run up the white flag and say goodbye, But of course I ain't at that point now. So I live each day as it comes along. If I do get Ra223 I hope it zaps my bone mets and with some luck I could get a long reprieve if bone Pca has not mutated and spread back into body organs. I have had Pca since about 2004, well before diagnosis in 2009 with a bad inoperable Gleason 9 at age 62. And none of scans show all the tiny mets which can grow bigger, but for now, Ra223 looks maybe best for mets we can see in scans, and all in bones. Docs are not much good at giving remedies for what they cannot see in scans, although many men will respond to ADT like I did from 2010 to 2016 but then I saw the first mets in scans. So during time when ADT did work on its own, I didn't ever know what met status was, but guessed I could have had hundreds so small and all slowed down by ADT along with what was slowed down in PG. Anyway, I doubt Pca is ever going to go away soon. I see my onco on Jan 4.

In NSW, a new outbreak of Covid has begun and may upset any access to Ra223. We have vaccines coming soon, but there's plenty of time for big spread of C19, and shut down of NSW. I live in Australian Capitol Territory, in the National capitol city of Canberra in Australia within state of NSW. Nobody knows if NSW lock down will work, but we have had no cases here for months.

Patrick Turner.

[MyWifeMyLife in reply to GP24]

Thanks for the article link, I’ll keep this in mind. I do know it really won’t decrease the PSA. But I’m focused on killing all the bone Mets I have throughout the skeleton. I’m very lucky it hasn’t spread to any lymph of organs..keeping my fingers crossed. I’m currently on the Carboplatin and prednisone. Really don’t understand it. My red blood cells are “critically Low”. Just came off the Jevtana Carboplatin combo..what a ride. Didn’t seem to help much, had 7 sessions. Dr. Is pushing it I think. I know the carboplatin should be used with something else like Provenge but No. So, my RBCs keep going down (?) I have No Clue what his game plan is for me!?

[MyWifeMyLife]

Thanks guys, (didn’t mean to start your engines lol) I’ve read up on clinical studies..seems like the outcome is better than nothing. And yes, without the xgeva. Thank you for the links!

[MateoBeach in reply to MyWifeMyLife]

Xofigo also improves the benefit of Provenge when combined. Enhanced immune response (abscopal) to the cellular debris from bone mets. Ask about it.

[MyWifeMyLife in reply to MateoBeach]

I will thank you

[Tall_Allen]

Of course, use it. It increases survival and reduces pain. It doesn't combine well with Zytiga, but combining it with docetaxel, Provenge or PARP inhibitors (if you're BRCA+) seems to work well.

[MyWifeMyLife in reply to Tall_Allen]

Thanks, appreciate your candor!

[tango65]

Talk about combining Xofigo with Provenge, it seems to offer a clinical advantage:

ascopubs.org/doi/abs/10.120...

Hematological safety:

pubmed.ncbi.nlm.nih.gov/276...

Overall survival advantage:

pubmed.ncbi.nlm.nih.gov/273...

[MyWifeMyLife in reply to tango65]

Thanks for the links.

[Danielgreer]

I just had my second XOFIGO injection last week. The first injection completely eliminated the pain in my hip within a week. And the pain was pretty bad before the injection. I had to take opioids to be able to sleep. The treatment makes me tired. It took a couple of days for the fatigue to set in but after about 10 days it lessened. I had a Shingrex vaccine a few days before the first injection and that may have given me some intense nausea for a couple of weeks so that together with the XOFIG wasn’t very pleasant. I don’t have nausea after the second injection so that helps. Anyway, I should focus more on the pain elimination instead of the fatigue. I can now golf again, although I hav3 to wait for the fatigue to go down first. I wish your husband and you the best!

[Danielgreer in reply to Danielgreer]

Sorry I misread your post and now notice your wife isn’t involved so I wish you the very best with XOFIGO if you try it.

[MyWifeMyLife in reply to Danielgreer]

She’s very Involved, she’s the one with the medical know all which I’m thankful for..she was a project manager for clinical trials during her days of working..👍

[MyWifeMyLife in reply to Danielgreer]

Thank you..I wish you well also!

[abmicro]

I did it but I think too early. There is an optimal time. Not too early, not too late. Too early, wont kill much cancer. Too late, horrible side effects on blood counts.

[RJ-MN]

I've had two radium223 infusions. They are significantly easier than the docetaxel/carboplatin combo I tried for 6 months - expected, of course because the radium is mostly absorbed by my boney mets and not cytotoxic throughout the body. Surprisingly, my PSA went from 66.3 to 55.0 after the first infusion, but it also rose back to 60.3 a week following the 2nd.

[MyWifeMyLife in reply to RJ-MN]

Interesting thank you

[Fairwind]

I wasted three weeks trying to get R-223 treatments and ran into big-time insurance company push-back as these treatments are VERY expensive , $75,000 for 6 doses. Most providers won't order a dose until they have payment in hand. A blood test a week before my first scheduled injection showed my RBC,s red blood factors were out of range , too low, from prior radiation and chemo treatments, and they decided, at that time, I was not candidate for this treatment..Blood counts must be in the normal range to be treated.. I did the Lu-177 Vision trial, very similar in action to the R-223 treatment, which worked very well for me, my PSA dropping dramatically....But sad to say, when the treatment ended, my PSA resumed it's rapid upward climb...It's 5000 now...

[MyWifeMyLife in reply to Fairwind]

Oh Wow, sorry to hear about that. And gees, cost=life eh? Nothing ceases to amaze me anymore. Thanks