Since diagnosis 2009 at 62yo, with inoperable Gleason 9, but with low Psa only 6, I had failed RP attempt in 2010, but has EBRT + 2 years ADT, then pause showing Pca progress so I am still on ADT, and had salvation IMRT to PG, Cosadex, Zytiga, 5 doses Docetaxel, all not stopping Pca progress hence move to Lu177.
LU177 seems to have zapped all my visceral mets but not all bone mets, resulting in rapid present rise of Psa to about 65 now.
I have been given option of Ra223 or more chemo. I have no Pca symptoms, but want to zap all bone mets if possible, or extend my life and it seems Ra223 would have less side effects than chemo, and because I have maintained excellent health and fitness since 2006 before diagnosis, I may withstand side effects of Ra223 better than most who may have much higher volume of bone tumors.
Today I cycled 81km at good average speed 24kph in Canberra where I live, so I've done yet another 200km+ for the last week.
When I searched for direct comparing of Ra223 or Cabazataxel, it was not easy to read between the lines, but to me, Ra223 seems best option for good QOL during 6 months to administer Ra223, and afterwards.
Some say addition of Denosumab will help, and I think OK, but not too much which can cause lower jaw necrosis for men who have been on ADT a long time like me.
Here are some sites I found were worth reading..............
Denosumab should be started when your DEXA scan shows signs of osteoporosis. The low rate of lower jaw necrosis is not related to the time on ADT but is related to the time taking denosumab.
Xofigo seems to combine well with docetaxel (and I would guess cabazitaxel):
I was on Leuprolide for two years along with Xgeva (denosumab) before I developed a strange void on the lingual side of the gums on my mandible. I started waiving Denosumab injections and began Xofigo. I responded beautifully to that drug and celebrated the end of that treatment with a trip to France & Italy. Having taken almost enough courses to minor in art history, this was a once in a lifetime trip. Around the time I started Zytiga, my dentist referred me to an oral surgeon stating “you’re about to lose your jaw!” They removed a 2” x 3/4” section of my lingual jaw. I asked the oral hygienist if I was the most intriguing case of her day. She answered “You’re the case of my lifetime!” I guess there’s nothing worse than being an “interesting case”.”! Im grateful the repercussions of my Medicine Related OsteoNecrosis of the Jaw (MRONJ) have been very manageable with heightened dental hygiene discipline.
I had 3 doses Denosumab 2 months apart in about 2017, and got beginning of jaw death, but scans could not see it and I quit the stuff in good time. But now, if I get Ra223, having one dose Denosumab would be enough, probably would be no risk to jaw, and perhaps boost action of Ra223 going where calcium is being trafficked in/out bones with mets. I had too much of a good thing. It just is not clear what role Denosumab plays with Ra223, but some info says to take some, others say it makes no difference.
I was unaware of the mimetic action of Radium 223 being insufficient to send the drug right where it needs to be. My understanding was that it mimics calcium which sends it to the bone and the cancer being the area of greatest cellular turnover, that’s where the drug nestles right in. It sounds like you’ve heard mixed responses on whether taking a dose of denosumab helps it along its journey. I’d never considered that idea..
What's mimetic? My reading agrees with you that Ra223 mimics Ca where high Ca vacancies in bone tissue at mets allow Ra to come in, and blast Pca with alpha particles.
I just don't know if a dose of Denosumab would help Ra do its work.
I'll leave that to the experts to decide on.
ONE dose of Deno is probably all I need before 6 months of Ra treatment, and more could cause lower jaw necrosis.
Boy, I hope one dose of deno is not enough to do further damage to your jaw. BTW mimetic means that Radium 223 , as you stated, “mimics” Calcium because they’re on the same row of the periodic chart of elements. Best of luck to you in your upcoming treatment, Magnus! I just received results last night on a genetic germline mutation test of 81 genes and all of them were negative. Because my low PSA has, nevertheless, shown a consistent trend upward for the last year, and my PSA jumped from undetectable to 60, they’ve ended my “Lupron Holiday.” I received my first injection in around two years and am not looking forward to the hot flashes & night sweats kicking in again! The first time around I experienced 45 attacks per day! Well, have a great bike ride today! You amaze us all!
I began ADT in 2010, right after failed RP. I stayed on it for 2 years, and had 70Grey EBRT at 8 months after RP. Psa was low at time of EBRT and size of PG was small to make a small target allowing narrow width beam paths to PG, thus not causing so much damage to bladder, hips, and rectum. I had maybe 4 hot flushes a day, but I also cycled a lot right through all that which I think minimized all side effects possible. I also ate well, kept weight down, and was the heathiest man while I waited my turn for EBRT. That was a room full of very sad ppl I found, and if I said hello, there was often no response, and with me dressed in lycra, they must have wondered why I was there. It appeared most were older and very depressed.
But I could only cycle to get EBRT for first 2 weeks, I got a bit sore.
But during 6 months pause of ADT, after the first 2 years, testosterone came right back, my average bike speed went back up 4kph so I could ride with the "fast" group on a Sunday and it was like being re-born. But Psa went from 0.08 to 8 in a few months after Eligard effect wore off 3 months after ceasing injections.
That's when I changed to an oncologist to "see me out" because I lost faith in urologist who could not do RP ( not his fault ) but had only second rate fix of ADT + EBRT to offer me. This was well known to fail for Gleason 9 patients, but I was never
told, but I found out about my chances at a website of St Vincent's Hospital, a posh one in Sydney.
So I went back to ADT, and I had a few hot flushes, but not as many, and I kept up the cycling. I also had retired from working to make a living in 2012, so that made life easier and old age pension was plenty.
So staying on the bike seemed to work for me to stay sane, and cheerful while slowing dying, something we all have to do when we get old.
I have 40km cycle ride today to get across to a clinic to fit heart holter monitor. And I get chance to have all heart beets checked out while sedentary and also while working hard on the bike. I have high BP begin to happen more often over past year and I think its caused by taking Xtandi for a long time. Its obviously not keeping Psa low, its doubling each month. And who knows what effect Xtandi has over long term after it does what it was designed to do?
No docs are telling me because they just don't know.
Last October I had my DNA checked for about 15 genes thought to lead to all sorts of things but was negative, and Brca1+2 were not found, and no genetic reason for getting Pca was found, so PARP inhibitors would not work with me.
Now I just get a copy of email sent from doc giving Ra223 to my onco and it says Ra223 can extend OS by 4 months, and that having had all previous treatments won't stop me getting Ra223 if I insist. I find it awkward to ask any doc, "When would I die if I do nothing now? " They cannot really say, but I reckon 18 months, judging by Psa doubling time. So Ra223 might extend that to 22 months.
Really?
From what I read here, those who get 4 months are usually much more advanced than I am when they finally get Ra223 for their last stand. And maybe they have visceral mets as well, and are older, not so fit, and with other health bothers. And 4 months is a mean time, so like Provenge, some get years of life, and some get less than 4 months.
Anyway, I have no faith in trying more chemo with Cabazataxel before getting Ra223. So far, email from Pca nurse from oncologist says doc said for me to make the choice soon, and efficacy of having Cabazataxel before Ra223 is just not known about.
How can I make the best choice? its impossible.
I know why Lu177 failed to finish zapping all bone mets.
The small new bone mets growing up in bones after the older ones which were zapped are not making enough PsMa expression. so they were not zapped while small, so this is the weak part of Lu177 therapy, it depends on PsMa expression, and without that the mets can stay hidden, and not attract Ga68 in scans or Lu177 so a man has whole new problem.
To me, I should just zap what I can with Ra223, and see what happens. I think my marrow will survive.
The Ra223 doctor's letter to onco suggests other ARB or immuno therapies might be used, but does not give any details of what these might be and where I might get them, and what the efficacy is. The man next door had Docetaxel for his lung cancer, and one hospital boosted his immune system but it all just failed. Immuno therapy can only work if white cells are altered to recognize cancer cells, and if white cells pass on this attribute in future generations of white cells, cancer is zapped. There are ppl who have had 10 years survival after Provenge. Just not many though.
So just boosting existing white cells can't do much except provide protection against infections during time where white cells go low during chemo or other treatments.
I'll compose an email to doc who can give Ra223 tonight.
I'm honored to discuss this matter with you, Patrick. I hear what you're saying. I know what you mean about walking into a room filled with sad and hopeless people.
When first diagnosed I went into a room like that while waiting for a CT scan. When they called me back into the consultation room I received two pint bottles of a horrible tasting substance to drink within the next 45 minutes. As I walked through the hallway back to the waiting room, I couldn't stomach the thought of spending time in that dreary room. Right there and then I realized that I couldn't control a single thing about my rotten diagnosis, but I could control my response to it! I walked to the double doors of the waiting room and opened them both with enough force to get the crowd's attention. With both arms extended presenting the pint bottles, I burst through the doors, and loudly pronounced, "Okay, it's Happy Hour. The first two drinks are on me!" The room exploded into laughter and the mood was entirely changed. Everyone began talking with each other and telling jokes. I often will "reset the thermostat" like this when the conditions are not to my liking. I think people really appreciate the levity I sometimes bring to these dreadful appointments for cancer patients.
I have not yet been treated with Provenge but your info on immunotherapy sounds like you understand what it entails and what to expect from it. You sound pretty confident that your white cells are pretty resilient so you may do very well on Xofigo (Radium 223). Being Chemo-naive I sailed through my six treatments of Xofigo. The other five patients who began the treatment at the same time as me did not fare as well and had to cease treatment. Their bone marrow was so challenged from previous chemotherapy that another dose would've literally killed them. My white and red blood cell numbers were never so low that I was ever in the slightest danger of being pulled off the program. Completing that treatment supposedly added 3.7 months to my overall survival.
I don't know if I'm being overly optimistic, Patrick, but I feel like you've got a lot more living left to do and you'll have the opportunity to make that happen. Best of luck to you, sir. Please keep me apprised of your results. I will be praying for you my friend.
I'll give you a score of 150 / 50 for trying to break ice. I found it difficult to liven anyone up.
There was a young woman of 48, at RT waiting room for BrCa. I talked to her OK, on 2 occasions. The man I could talk to was man about 60 employed at a hospice. Have a guess what his problem was? Pca of course. Many were in pain, many 20 years older than me, really suffering, getting closer to their finishing lines for life, and they just could not get into joke mode.
How would anyone really estimate what extra time they got compared to doing nothing? 4 months is mean life extension for Ra223, with just as many getting more as are getting less, so depending a number of things plus luck a man could get years, or he barely makes it to end of 6 doses, if he makes it at all, and those who died soon after are not here to tell us about it.
This is why anecdotal evidence that Ra223 is better than chemo does not tell us much. My chances might be equal for either, But I do know just how useless Docetaxel was when I had it. Lu177 did a lot more, even though 6 doses killed all visceral ( soft tissue lymph node ) mets .
I have email prepared to send to doc giving Ra223 tomorrow, but this needs to sit as draft for a day, then I edit to make sure I don't offend, but do make questions simple.
The doc mentioned ARB drugs, and these are for high BP but some have been found to work against Pca bone mets. But its not approved therapy, and would be experimental. Maybe I get a benefit, maybe not, and goodness knows what happens to blood pressure. He also mentioned immuno therapy, but didn't say where that's available anywhere here in Aust. So why did he mention these as alternatives?
They may be adjunctive, ie, added to Ra223 to make it work better, but just what form?
Life can rapidly change when adverse skeletal events, ASE, occur, such as spinal compression and ribs breaking and all I can do is delay the time when this becomes unavoidable. I myself do not think Cabazataxel would give me any longer time alive than Ra223. Chemo would cause more side effects, Ra223 could cause diarea and vomiting but for limited time.
This part of experience with Pca doesn't look any worse than when I stopped chemo and went to Lu177 instead.
I will ease back on the bike a bit. If I only cycled 100km a week instead of 200km, I'd be OK, I'd adjust my diet to not get fat, like I have in past. Its a case of good nutrition without excess calories.
Well that was a bit of a dance to get what you were pretty sure was the next step. Glad your doctors got on board and you can move forward. Can you ride your bike to the treatments? Maybe some new lycra is in order. Best of luck you have a great response to the treatments.
The Ra223 treatment is 300km away in Sydney. So like the time I got Lu177 at same place, I will travel by train on day before, and on train return day after, and I'll stay at my sister's small apartment because we get on OK. When I was 41, 42, I did cycle to / from Sydney a couple of times, and I could ride 300km in 12 hours. But not now at 73, and not with much increased traffic on roads. Patrick Turner.
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