Been to University of Heidelberg four times. Had LU-177 and AC-225. PSA is now 0.08. Still have a prostate. Was as high as 747.
On Fermagon. Two urologist suggested I go of it. One oncologist said cancer is cured and go off Fermagon live another 10 years. I
am 79.
How often should I test PSA and any other things to do while off the Fermagon if I do so.
Thanks
The Lu177 treatment does not cure you. It can remove all the mets you can see on a PSMA PET/CT but you will have smaller mets which do not show up. These will still be present because the ligands cannot find and attach to those. They will make your PSA value rise again in about a year's time or earlier. Also you probably have a small amount of PSMA negative tumor which does not show up on a PSMA PET/CT but will not be removed by a Lu177 treatment.
This is my experience. Also that doctors declare you cured because nothing shows up on a PSMA PET/CT and ask you not to continue with ADT. Nothing shows on my PSMA PET/CT but I have a PSADT of two months. This is probably PSMA negative tumor.
My recommendation is to continue with ADT, Degarelix or Lupron. If you want to avoid the side effects, take Bicalutamide 150 mg (plus Tamoxifen). You still have cancer in the prostate and small mets. ADT will last for long if your current PSA value is 0.08. But it will rise quickly if you do nothing. Doctors do have no experience with follow-up treatment after a Lu177 therapy.
Thank you for your information. I also had AC-225. The DRE showed a very small prostate and no bumps. Also, no bone mets and lymph nodes look good. I will talk to my doctors about Bicalutamide 150 mg plus Tamoxifen. I have read about them and am seeking that instead of no treatment. At least I can get some relief of no T for all these years. Someone in my house might also be happy. I do not have the courage to do nothing. To much to lose. It goes to show you how much my doctors are really not up to snuff on our disease . We do have some on this site who do go on vacation.
A PSMA scan will show the remaining cancer in the prostate, better than a DRE.
I am afraid your doctors will not recommend Casodex, it is not mentioned in the guidelines as a monotherapy. Maybe you can argue that if they recommend to stop with ADT, why is Casodex a bad choice compared to no treatment? The argument in that case cannot be that Casodex is not as effective as Degarelix.
I agree with you about Lu177 and small mets.
I had 4 doses Lu177 from Nov 2018 to May 2019, Psa went from 25 Nov 2018 before Lu177 to 0.32 at Nov 2019.
Follow-up PsMa scans showed no active mets in many lymph nodes that were active, no Pca in PG which could not be removed in 2010. Many bone mets had been zapped, while some nearly were all zapped, plus a few newies.
But I had Xtandi last year, which worked to reduce Psa, and masked the effect of Lu177.
Psa went up from 0.32 to 30 between Nov 2019 and July 2020, so I have had two more doses of Lu177, I'm still taking Xtandi, but I believe its useless now. I did have Veyonda during 5th and 6th shot of Lu177 on 24 July and 2 October, and Psa is about 7 now, I just had PsMa scan and will know results in a week. The Xtandi is thought to increase PsMa expression at met sites thus make PsMa scan see more mets and make Lu177 more effective.
I expect I had or still have countless tiny bone mets that failed to show up in recent PsMa scans, and that means Lu177 won't have any effect on killing them until they inevitably grow bigger and make an image in PsMa scans, and maybe Lu177 will then kill them, but there is a limit to how much Lu177 a man can have before the accumulated exposure to low levels if ionizing radiation could lead to leukemia.
If doctors find a bunch of tiny new mets at last week's PsMa scans then I have a rough road ahead to kill all these mets. I'll run out of options.
Meanwhile, life goes on and I'm doing craft work in my shed and cycling 200km a week and nobody would guess I have a terrible health bother.
I continue with ADT, and at 73, I could not care less about having a sex life, and I found that for about 20 years when I was a hot rooster before 62 when diagnosed, I found no lady wanted to stay with me despite liking to bonk me, tell me I was The One, and call me darling, and swearing they loved me etc, but none ever meant what they said, and preferred to keep running about the world searching for goodness knows what. I never found a lady who liked riding a bicycle. So such is life without a wife, I find it very tolerable because I could be in a position now with a wife with a terrible disease and have to spend all my time caring for her. We don't read too many stories about that here, but it must be going on.
I had EBRT, Cosadex, salvation IMRT to PG, Zytiga, chemo with Docetaxel, and last week's PsMa scan was my ninth, and all these treatments before Lu177 didn't ever kill much Pca. Mets mets kept increasing in scans after 2016 when they first appeared in. They only decreased significantly after first two does of Lu177.
Last July I had FDG PET that was negative. I have no idea of how many generations of mets has occurred. Afaik, a met might begin in a bone, then send of Pca molecules and they begin another met elsewhere, and so on. Thus met numbers can be in thousands, and not show up in any scans or be treated. While all these mets are microscopic in size, they have no effect on health. So a man lives with this lot.
I had genomic testing which looked at about 12 genes thought to make it likely to get Pca but results showed I had ZERO genetic markers that would have caused Pca. The geneticist told me to come back in 3 years because the library of gene defects linked to diseases is growing exponentially. But I probably won't get Olaparib PARP inhibitor, although I still may be worth a trial, and if Psa went lower after a dose, then I'd have another and so on.
I've been on ADT since 2013. I am still quite healthy and fit. I like being alive, but I know there will be a time when I begin to un-live.
I may get Ra223, which may go to where very small new mets are. I have not yet talked with doc yet about this option. So far, since diagnosis in 2009, with Psa at 6, highest Psa was 50 for about a week at end of chemo in October 2018. I am not much yet damaged by Pca. Biggest bone mets were 10mm dia and they succumbed to Lu177 quite well. So bone strength is still OK and I have no pains due to Pca.
Probably, many of us end up being very puzzling cases for doctors because they see out Pca progression, they see some Pca killing going on, yet Pca remains. They say "Oh that should have worked" Oh, but it didn't. Or they say "this will work" and it just doesn't.
It may be a nice sunny spring day tomorrow so I'll be off down the road on a long bike ride for Sunday, with a nice cafe stop for lunch.
I can see the possible worst about my Pca, but I don't let it upset me much.
My best Regards to all, may you all live to a ripe old age, and during any endeavor, may a favoring breeze blow you along,
Patrick Turner.
Ride on my good man
Patrick,
you should get a germline and a somatic gene test to check for BRCA2 and 1. The mutation may show up just in one of the two tests and would qualitfy you for Olaparib.
gp
I had the genetics testing you suggest about a 6 weeks ago, and I am not Brca1 or 2 positive and they looked at 12 other genes thought to make Pca more likely, and to indicate PARP inhibitors such as Olaparib might work. Well, nothing they found indicates Olaparib will work, and there's no genetic reason why I got Pca. I just did get it. It could have been caused by time I spent smoking up to 11 cigarettes a day from age 18 to 34, or it could be from soldering fumes in electronics. Nobody knows. But my dad died of melanoma, his mum died of uterine ca, one sister of mine of ovarian, and other sister just survived Brca after double mastectomy with chemo.
My mum lived to 98, and had no major cancers. I watched a friend die last year of Pca, and he was Brca1+2 positive, and PARP inhibitors after chemo failed pushed his Psa from 40 to 432, and new mets showed up in his liver and he got so sick in hospital he could not get Lu177, which may not have worked because his Pca had mutated a lot.
His time after diagnosis was less than 3 years. He was under 60 when he died, and it was major disaster for his family.
I'll do a good cycle ride today, but first the weather must warm up a bit.
Patrick Turner.
Yea Patrick I think there is not enough money and research spent on why we get this. Most money is spent on killing it after you get it not preventing . I don't get it?
But the "experts" who advise governments on medical matters have decided here in Australia that "normal range" for Psa is from 0.55 to 5.0.
For men who are never going to have any problems with their PG the Psa at 40 might be 0.7, and at 60 its about 1.0, without increase. BPH can make Psa zoom up to 20 and if docs searched, they may or may not find any Pca. But anyway, without having BPH, Govt decided PG should well examined when Psa goes over 5.0. Methods for examination have changed a lot since Psa testing began maybe 25 years ago, but gold standard has been a biopsy. In chat groups I was in about 10 years ago, some sensible men didn't just rely on Psa and booked in for a biopsy as soon as Psa went over 2.5, well above the Psa that men may have who are never going to have trouble with their PG.
By the time they got the biopsy, Psa might have reached 3.0, and maybe no Pca was found. And there may be no symptoms. But men in the group had annual biopsies until Pca was found, and then without any hesitation they had open surgery to remove PG and most had a good outcome except for ED. I had an email from a man whose local doctor insisted he have a biopsy with Psa 2.5, and the man was eternally grateful because Pca was found, and he had PG cut out asap.
But govt advisors are expected to tell governments the best prevention methods are designed by accountants, and expense on prevention must be kept low or else the economy will be ruined. Its like, "Well, we know the old bridge has a bit of rust and cracks, but we'll let the cracks get a bit bigger and just paint over the rust, and thus avoid 25 million on a new bridge..." Then the bridge collapses, killing a few ppl and legal cases go on for years, and and cost of a bridge goes higher, so total cost ends up 100 million.
Politicians hate repairing infrastructure; they wanna cut taxes for rich folks who vote for them. Its human nature to put up with ongoing bad ethical behavior aka as atrocious BS, Nobody jailed. Nobody gives a stuff.
But anyway, if a man goes to a good doctor when Psa is 3.0, and he gets to a good uro surgeon, he could be so good with a scalpel that he spares all the nerves, and a man remains a Hot Rooster and he dose not have pissing problems and he keeps his testosterone and apart from slight temporary discomfort, the man gets on with without taxpayers funding usd $150,000 from Medicare and a man spending usd $50,000 of his own dough.
I was not aware of any of this until I had pissing troubles, and semen flow stopped, and wake ups at night started. Psa went up to 6, and so I got diagnosed too late because I had a Gleason 9, which turned out to be in-operable. Docs told me not to worry, they had EBRT, ADT etc, and that would fix me, and they failed to convince me with their BS. So taxpayers and myself have paid a lot for what could have been avoided. But doctors maybe don't care about good prevention because they put them selves out of a job. Getting big $$$ from sick old men is Big Business.
Beautiful spring day here, I did 69km, at good speed, and my total for the week was 229km.
I got something done in workshop. This next week is time to leave the bike alone to concentrate on Hedge trimming, grass mowing, and cementing up a strip of land between my house and shed and a new fence my neighbor and I had erected a few months back. I need to stop the weeds. Just a bit at a time for hard work at my age is OK for me.
229 should hold you for a week off the bike just do the same when you get back on :). Cheers
That is a great response! But the cancer is not gone and you should not go off Firmagon. Only those cancer cells that express PSMA have been killed, the others have not been killed.
Thanks Tall-Allen
Hello,
The advice my oncologist gave me early on in my metastatic journey is to stay on the Firmagon or Lupron train. You can add things onto the train and you can take things off the train but you are on the train for life. As Tall Allen and others have mentioned metastatic cancer is not homogenous, it is heterogenous. Lutetium and/or Actinium only kills the cancer cells that emit PSMA. If you get off the train you are back to square one. You don't want that to happen. Hope that helps.
Yes Thanks
Whatever you had done you had it done correctly. Congratulations and book that 2025 Alaskan cruise while the prices are low.
Do a little King Salmon and Steelhead fishing while there.
Now your talking, I fish for Steelhead here in Michigan. BIG Steelhead.
River or on the great lakes?
I wait until they run up the Muskegon River, Nothing like standing in the water wearing waders and hooking up with a monster steelhead, or brown trout,
I have never did river fishing for steelies. I became hooked on the great lakes fishing and never moved to the rivers. Used to catch a mixed bag of Walleyes and steelies in lake Erie Canada side port of Erieau EH! Miss that part of my life. And there are Kings there as you go further east
Whoohoo! I don’t really have answers for you ,but congrats on that . 08 ,in hope that it last for many good years .
I'm surprised that your doctor would pronounce you as cured, as many doctors maintain that there is no cure for prostate cancer.
But one thing I'm learning on this journey is that oncologists say a wide variety of things to their patients, always maintaining that this or that specific course of treatment is the most correct one.
How one knows that I am cure of PC.....Which marker ??
My so far trip with this cancer has been scary as to what I have been through. I am sure I am there pet white rat. ESK891 trial failed ,gave me a blood clot, Edema both legs hardly able to walk, two strokes from clot, lost side vision both eyes, lucky not blind, then off to Germany four times. I should be cured. Fortunately the trip continues.
That’s a lot of hell that you’ve paid . Your still here ..😎✌️
Stay on the Firmagon since it is working and you are tolerating it well. Nothing to be gained by stopping it. If you do decide and choose to switch to bicalutamide then dutasteride 1.0 mg should be added with it because you will make significant testosterone while on it and the dutasteride blocks conversion to the more dangerous DHT. That is an acceptable alternative regimen for ADT. But the Firmagon is better. You could test your T level two months after a Firmagon dose and if it is still castrate then you can go to The Firmagon shots every two months for more convenience. Best of luck and long happy life.
I would agree with most of the others - the word CURE should not have been used here - that is premature and very deceiving / unprofessional.
You might want to consider an ADT 'vacation - given a few months (Off ADT) you will get an indication as to how 'successful' the eradication of the castrate sensitive cells was / has been.
Assuming that there are no other types of cancerous cells in your body would be an error.
It is possible that you are one of the lucky ones and you are in total remission - but the statistics would suggest otherwise.
You need a second opinion - but the advice offered HERE, at your age (79) is something I would seriously consider - assuming the Side Effects are not something that is affecting your quality of life.
Wishing you well on your journey ....
Why are you asking us?
Good question. I do know there are some men here that go on vacation. Seeking any information about there trip and preparation. Also, I find the men on this site know more about the Pca than the doctors I seem to be seeing. I even had an oncologist say as we are talking about his suggestion I go off ADT he said I know more about this than he. I think most of these guys are well meaning .
Many more dream a vacation but never get one . I’m over five years on adt with no one willing to take me of of it ..
Vacation from Lupron/Zytiga - Temporary or Permanent!
Thoughts on vacation and PSA
opinion on timing of ADT vacation 
PSA numbers on QoL Vacation (copy)
