I have been asked by the MO handling my Lu-177 treatment to completely stop Abiraterone as long as I am taking infusions of Lu-177. He has also told me to discontinue Eligard again till my Lu-177 treatment was over.
My fear is that stopping Eligard completely (for about 6 months) will increase my testosterone levels and perhaps feed the prostate cancer.
What do you guys think ?? Thanks in advance.
What is your Doc's reasoning?
He muttered something about fracturing of bones. I am not 100% sure I got him right. Tomorrow, I am checking with my usual MO and will listen carefully to what she suggests and why.
Maybe you can have your usual mo talk to the lu177 doc to clarify what his thinking is and to what extent it is supported with clinical evidence.
I plan to do that as well. But, first I want to check with my usual MO as to what she thinks about this.
I have read articles on the Net which say there is a synergy between Abiraterone and the Lu-177 therapy. That they work better taken together.
You want my opinion? Nobody has a clue with regards to this question with the exception of Kulkarni who did the research and found it significantly prolongs overall survival in early intervention with lutetium, whether this is enough to base treatment sequencing on who knows. Couple this with increased psma expression with 2nd line hormones and it makes sense to but then you through into the mix the ERA 223 trial with zytiga and radium ( another radiopharmacetical) which produced bad results and now everyone is confused and the safe option is not to take it.
eurekalert.org/pub_releases...
"Additional treatment with newer antiandrogen agents Abiraterone or Enzalutamide in combination with 177Lu PRLT also prolonged survival."
Ask your Mo lol.
Yes, your linked article is one of the ones I had read earlier and mentioned to Tall_Allen. I will pursue this matter in Bombay, but frankly, I do not have much hope. Either they outright don't know or they want to hedge their bets. You are right, they will say---the safe option is not to take it.
But, what about my T levels ?? Could a rising T level (in the absence of Eligard) screw up matters ??
This was our concern too testosterone through the roof and feeding the cancer.....
This was study I read with xtandi and radium .. as tall points out small sample
Muttering? "SPEAK LOUDER DOCTOR YOU'RE MUTTERING AGAIN."
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/30/2019 7:54 PM DST
I understand cutting back on abiraterone because of the Xofigo trial, but I share your concern about cutting out Eligard. Remember that in small Phase 2 trials, abiraterone and Ra223 worked well together; it was only when they expanded the trial to Phase 3 that the interaction was discovered. The trial with Lu-177-PSMA was not randomized and the number of people taking the combination with abiraterone was probably very small. I think a minimal precaution is a bone preserving agent.
I have taken two infusions of Zolasta and will take the third one in a few days (next Monday) . I will continue with Zolasta for some time. I take it once a month.
I will check with a couple of MO's regarding Eligard. If there is no consensus, then I might follow GP24 and take Casodex instead.
What do you think, Tall_Allen ??
Why would Casodex be any better?
GP24's reply just below this explains why.
He says " Casodex does not reduce the testosterone but blocks the androgen receptors in the PCa cells so testosterone cannot attach to them. Since you keep your normal testosterone level you have no problems with bone health. And, it seems that Bicalutamide may increase the PSMA expression and thus makes the Lu177 therapy more effective".
Read GP24's post. You will get a clear idea. Thank you.
Unfortunately, it doesn't work that way. Androgen blockers, like Casodex, do not just block the androgen receptors on prostate cancer cells, they block the androgen receptors on all cells. Androgen receptors occur on almost all cells in our bodies, especially on bone tissue.
Well, in that case, what is the best option for me ?? If I stop Eligard, my T will rise. How do I prevent that from happening ??
Thank you for your help, Tall_Allen.
Then don't stop Eligard.
That's exactly what I was thinking 
Fortunately, here in Bombay, I don't need a quack's prescription to buy Eligard.
Though, if I really needed a prescription, I could get one.
Thanks again, Tall_Allen, much obliged.
why do you think those prescribing Eligard are quacks?
I use the term "quack" colloquially to refer to doctors in general (such is my contempt for most of them). I must make it clear that I am only referring to my experience with Bombay "doctors".
I agree.
Hi Tall do you know how many participants took xtandi/ abiraterone on the kalkurni trial ?
nope
Does PSMA have another meaning besides prostate specific membrane antigen??
Nope
Not in the context of prostate cancer.
I do not think your MO can know whether you should take Eligard during the Lu177 treatment. She probably had no patient yet who did a Lu177 treatment.
I took Bicalutamide instead of Eligard etc. during my Lu177 therapy. This does not reduce the testosterone but blocks the androgen receptors in the PCa cells so testosterone cannot attach to them. Since you keep your normal testosterone level you have no problems with bone health. And it seems that Bicalutamide may increase the PSMA expression and thus makes the Lu177 therapy more effective. I do not think your Lu177 team objects against it, they rather recommend Xtandi instead since this is more effective than Bicalutamide. Bad Berka did recommend this to me but I could not get a prescription from my URO since I am still hormone-sensitive.
Very good point about my MO probably not knowing because I am her first patient doing Lu-177. Excellent deduction. You are probably RIGHT.
I will also check regarding Casodex (bicalutamide).
Thank you very much, GP24, for your contribution & excellent suggestions.
Much obliged.
Must say I think hitting the cancer in the prostate sensitive stage with lu-177 and zytiga or xtandi is the way to roll.
I agree with you though I know a lot less than you.
To me too it appears to be the optimum way to roll.
When I had the Lutetium treatment in 2016 at the Technical University of Munich I was in ADT (lupron) and casodex. They did not ask me to stop ADT or Casodex. I think the problem is the bad results with the Xofigo and abiraterone trial. I have not read in any of the Lu 177 PSMA papers that they require to stop ADT or Zytiga.
Thank you, tango65, for sharing your experiences at Munich.
There may be other reasons for quitting all ADT medications during Lu177.
But I'm having my 4th Lu177 next Friday, and doc said at 3rd Lu177 to begin taking enzalutamide because it will increase PsMa expression and more Lu177 will be drawn to my tumor sites in my bones.
if you have been on Lupron and abiraterone for quite some time, say many months for Lupron at least, then it takes a long time for the production of testosterone by your testicles. I've had Lucrin, similar to Lupron for many years, and maybe if I quit having the monthly injections my testicles would never restart, because a prolonged absence of T causes testicular atrophy, and also causes permanent penile damage in case you were not aware; any feeling of pleasure has gone, the sponge tissue that fills with blood is now riddled with fibroids so when I get a hard on its got a bend towards my feet, and is 1/2 the length it used to be and is utterly useless for intercourse or any manipulation.
But after first 2 years of ADT were done, with EBRT to PG, Psa was 0.08 and I quit the ADT to see if the Psa would rise, ie, see if the treatment had worked, and clearly it had not because within 6 months the Psa was 8, after 3 Psa tests, so that treatment failed. I had to re-start ADT and Psa nose dived to 0.2 and remained low for 4 more years before it began to rise again while on ADT, like it does for most men. During the 6month pause, T levels took about 3 months to climb, and Psa followed the rise and all my physical stamina on a bicycle and the speed returned, a temporary re-birth. Sex ability all returned. But within 3 years after the ADT restart, I lost 4kph off average cycling speed and lost all sex ability. At that time, 2016, there was no Lu177 available, next step then was salvation IMRT to increase the dose at PG, add Cosadex, and when that all failed I began abiraterone, and I've continued Lucrin till now, will keep going.
Lu177 has got my Psa from 25 to 5 after 3 shots, so it will be interesting to see what the 4th shot will do. I guess if there's a dramatic Psa drop it may be also due to enzalutamide, but nobody could really know, but docs say that after the chemo and Lu177 I have had now it would have re-sensitized my Pca to be suppressed or killed off by the enzalutamide. If you find abiraterone fails, docs say trying enzalutamide is useless, it won't work, but the chemo and Lu177 changes this outcome.
I have no idea what might happen, because the Pca can mutate to become something else that does not make Psa, and cannot be seen in PsMa scans, so more Lu177 would be useless.
Horrific things can and do happen with Pca progress and worst is where the rise of Psa and mets of mutated Pca is so fast that nothing can be given to kill it such as the more potent chemo which then leaves more lingering side effects.
I can only say what my long battle experience has been since diagnosis in 2009, a Gleason 9, with 9/9 positive samples. It was inoperable, and mets were probably in many places, but slow growing. Psa was only 6 at diagnosis in 2009, and I should have had biopsy in 2004 when I bet Pca would have been found when Psa was about 3. In other words, I was diagnosed years too late, despite getting yearly Psa checks, and medical system regards Psa of 0.55 to 5.5 as a normal range, but it just ain't. Men who will never get Pca have Psa < 0.7 at 40,
and > 1.0 at 60, and my cousin of 74 has Psa > 1.5, but does have BPH, so he takes too long to have a pee. I lost my dad to melanoma, a sister to Oa, another nearly perished but beat her Brca, so I wondered when, not if, I'd get Pca. I saw many local men go down fast with Pca because they never had a Psa test.
Your fight is not over, nor is mine, and I love life so I'll take all the doctors offer, and I sure don't know more than them at this time.
Try to stay brave, and find the positive, be grateful for life you have had; I try to stay busy and face each day without getting gloomy, and if Nature calls me, and the docs have done all they can, then OK, I'll bow out humbly, and hope the pain drugs work well. Ever since diagnosis I have never known how long I would have, but it looks like I'll make 10 years, and Hoo Noze what new treatment might come along, such as more effective immune therapy where my immune system can be trained to see the cancer and take it out.
I wish you well.
Patrick Turner.
Thank you very much, Patrick-Turner.
I got the latest Psa from a blood test before my 4th Lu177 tomorrow,
only 3.9, down 20% from 4.5 about a week before, so Psa is falling almost as fast as riding a bicycle over a cliff, relatively speaking.
I'm off to Sydney now for the LU177 treatment, and I get two days to see my sister, and then I'll be back on late Saturday arvo.
Cheers to all and take care,
Patrick Turner.
All the very best, Patrick.
Hey Guy! I haven’t been in your position yet. I see guys like Patrick already going through the same . It emboldens me a bit . Should give you some peace talking with chaps doing the same thing . Good luck brother . Many prayers of healing coming your way.🙏
😂. Let that Psa drop . Good news.
I got back home from Sydney where I got the 4th Lu177 shot, Psa is 3.9, and aches and pains did not stop me using public transport so expense for 300km train trip to and from plus taxi cabs did not cost more than usd $70 / aud $100 all up. Doc is happy with progress so far. Three other men were there, one from Oz who had had a very strange progression of Pca after a botched initial pathology result from biopsy which found no Pca in PG, but he had high Psa, but that was back in 2004, so he's had a good life since then he said, and at 71 is a construction manager for an expanding aged care provider, so he works on, and he earned my respect for sure.
The two others were visitors from USA, where access to Lu177 is limited, and it must attain phase 3 success before wide availability is possible outside present trials. But in Oz, when everything available here has failed, a man is allowed to buy whatever he wants but it is not covered by Medicare, and Novartis holds patent for the ligand chemical for Lu177, and the Oz Govt won't subsidize the high price of this ingredient so Lu177 may never be funded by Medicare even with phase 3 approvals. Patents last 10 years, generics might try to barge in, but patents can be extended on appeals, so the Lu177 treatment is subject to political will to improve the health of Australia's old men.
I had a good talk to the other 3 men, and one thing was certain, we all thought we needed to take action as best we could, without concerns about the costs. We all love life too much to dither about.
The Oz man was having a 5th Lu177, but keeping is down, one American was on his first, other on his second, and we may all have different levels of success, but so far, so good for me, but I have to prod docs to do more for me if they think they can, and I have follow up scans ahead and blood tests et all, the fight to stay alive for longer than Nature intended is not over.
Patrick Turner.
I admire you Patrick . You are totally independant. Awesome. Do you have any carpentry projects lined up yet after treatments , or can you still work wood? Hang in there!👌
I have a pergola above the patio beside a pool area that needs a re-build, and two rooms that need cork flooring, and I have a guy who I'll work with on these things because I doubt my hip will allow me to do it un-aided like all other things in my house.
I was a very good carpenter up to when my knees gave way during a recession here, when work was scarce, and docs could not / would not do much then so I quit being building contractor and changed to mainly sit-down work making hi-fi sound systems in 1994, see turneraudio.com.au
I've yet to upload the latest on Lu177 at my 'Patrick's concerns' page.
But yeah, I have been very independent, but I am happier working with vacuum tubes than working with wood.
Patrick Turner.
Nice vacuum tubes ....man of many hats , I too have a hip that is preventing me to do much . Not bad enough for a transplant yet ,but it hampers my operations . Cork flooring sounds nice ... Good to hear from you Patrick . 😎
I did have carpets, but they filled with carpet moths, so cork is it, like a few other rooms, despite more noise of ppl walking about.
But in my end days I might need a live-in-carer, and I can offer one a rent-free place, and here where I live rents are sky high, and its no use trying to make a profit when you are dying. Most landlords are insatiably greedy, but I ain't. The moths won't eat the cork. Wine may be spilled and its an easy clean up. ppl can bring their own rugs.
Day 3 after 4th Lu177,
all going well, less hip ache than yesdy which was very slight and no other bone pains yet because probably bone mets have been already reduced enough to not absorb high amount of Lu177 to cause the inflammation of nearby joints. This happened in the No1, 2, 3 Lu177 infusions, but was mainly temporary.
I'm OK walking and "farnarkling around" in my shed for awhile all day, and doing house work, I must be my own servant. But I am not game to cycle anywhere yet. Last month I built up to 21km per day, OK, but when I tried 42km it felt good to do it, but took 3 days to get over it.
Before I had both knee joints replaced early 2017, I'd been doing 200km a week, but it was agony to walk around a shopping center. Now, its pain after a ride, but walking is still possible.
Beautiful weather here, nobody is hassling me.
Time to get out to shed before lunch, I have to teach a tube amp to sing for its owner.
Patrick Turner.
I Hope that hip pain deletes . Knees also? Wow.. nice weather no hassles ,sounds great . Peace Patrick ..Thanks for the reply ..
For me I stopped Zytiga but they still have me on Lupron.
Did they ask you to stop Zytiga ?? If yes, why so ?? If you stopped Zytiga on your own, why so ?? Thank you.
I asked them if I could stop the Zytiga since it had stopped working for me. Once I was off of Zytiga i did lose 25 lbs and feel so much better
Thanks, Jackpine.
Whatshis name,
Are you taking any bone building meds.? My husband takes a monthly Xjeva injection along with his Lupron to balance bone loss from Lupron.
Perhaps some of the ones you are taken is to help with that.
Good luck!
BOOGEE
I have started taking Zolasta for the last 2 months. I am going to continue with Zolasta until I am told not to. Its a once a month thing.
Any side effects from the Zometa felt yet?
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LU 177
Can you repeat LU 177 treatment 
