I've been fighting this for 11 years but it looks like we are coming to the end of the line.. My PC is still confined to my bones and no serious pain but how high can a PSA number go ??? I still haven't tried a Platinum based chemo but I've had 7 other treatments over the past 5 years.. Some tough decisions coming up..
PSA came back 3400...Doubling every 3... - Advanced Prostate...
PSA came back 3400...Doubling every 30 days..
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Fairwind
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I know you once posted about BAT, but did you ever pursue that, or make contact with any docs who might consider high-T?
I believe it can go substantially higher.
But doubling every 30 days. That is the issue. That will very very quickly get substantially higher.
It would seem you need to take some immediate action.
I cant remember if you tried Xofigo+Provenge. One guy in my group had a PSA over 10,000.
I wonder what my insurance or the VA for that matter would say to that...? Both of those treatments are very expensive so there is sure to be heavy push-back.. But I'll ask !
Blast it with a Platinum based chemo. It's probably your best bet at this point.
Anecdotally, I had a PSA of just over 5,000 about 7 years ago at original diagnosis. At the time, I only had pain near one spinal met and one lower abdomen lymph node, but otherwise was OK in terms of any actual symptoms from the numerous other bone mets and lymph nodes before starting ADT, which knocked it right back down.
Hope you find or decide upon a treatment or palliation option soon, Fairwind.
I actually read about a man who's PSA was 24,700 and he survived for 7 years after that test. I was wondering your same question when my original PSA test was done.
I think if you are diagnosed with a PSA value of e.g. 10.000 you can get it lower quickly by starting ADT. However, if you have this PSA value after many years of treatment you have to be concerned. Maybe a treatment with Actinium 225 will help.
BAT or Platinum chemo was going to be my next step..My docs just won't consider BAT..I've thought about DIY BAT...I mean, at this point, what do I have to lose ??
• in reply toFairwind
Hi Fairwind,
Would you ever consider trying an inexpensive supplement (Essiac tincture) that I'm convinced has been helping me for more than three years?
I'd be the first to admit there's no scientific evidence showing it to be effective, but my Oncologist is amazed at how well I'm doing.
It might not help you, but it's inexpensive so it might be worth a try.
Best wishes
Dave
• in reply to
Modified citrus pectin and berberine have been shown promising for prostate cancer too, and specifically metastasis.
• in reply to
Dave: Can you provide a link to that tincture so we know exactly which one you had results with? There seems to be a variety of them out and about. Thanks!
• in reply to
Bigfooter: Ok, but first I want to once again point out that I have no financial interests in Essiac.
Here's the one I have been taking for more than three years.
herbaltech.com.au/essiac-te...
Best wishes to all,
Dave
• in reply to
One last question: what dosage do you personally use? Thanks!
• in reply to
Bigfooter: For the first two years I took approx 10 drops under my tongue twice a day as per the bottle's instructions.
(It recommends 6 - 10 drops once or twice a day. )
For the last year or so I have cut it back to approx 10 drops just once a day.
I'm the first to admit there's no scientific proof it is effective, but I still think it's worth a try.
CalBear74• in reply to
Fairwind and Davek,
I combine my Essiac tea with IP6 daily. See my previous posts for discussions of Dr. Shamsuddin’s research at the University of Maryland Medical School on IP6. His book is available at Amazon.
sgrama• in reply to
My husband drinks essiac tea twice daily. Is that the same thing?
• in reply tosgrama
Hi sgrama.
It's probably the same.
I take it in tincture form because it's more convenient for traveling. Provided it has the same herbs it should be ok.
How long has your husband been taking Essiac?
Has he noticed any changes?
3 months ago my September PSA jumped up so I went back to taking my Essiac tincture and CBD oil twice a day instead of just once a day.
Perhaps it was just a wild coincidence but my December PSA went down again.
If you click on my avatar picture you can read my bio if you're interested and if you scroll down below my bio you'll see some posts I started about my cancer journey and Essiac.
Best wishes
Dave
sgrama• in reply to
Hello
His PSA was over 4000 and now it’s down to 2450. He’s been taking it for quite a few months now twice daily like 3 ounces each time. But he’s also doing fenbendazole once daily so hopefully something might be happening.
He has a friend who brews up the tea for him and brings it to us.
• in reply tosgrama
That's interesting.
Our "common denominator" appears to be the Essiac.
All I can suggest is keep doing what you've been doing and don't give up hope.
Dave
Sartor at Tulane will do bat.
He does teleconferences. I would rush to set up an earliest possible teleconference AND physical visit.
Last time I checked he favored going straight to high dose testosterone without alternating.
Personally I would want to start with alternating first. My guess is he would accommodate that.
There is no way you will get a sufficiently high dose of testosterone with diy.
A medium dose of testosterone will just make things worse.
Please let me know what happens if you use Sartor.
If you have to fly to Tulane, don't forget to use both a mask and goggles.
Hi Fairwind,
I feel very sorry for you. I would like to write to you about another patient from another forum who had a psa level of 32.000.
Patient born in 1930, 10.2012-psa 50,62 biosy: G3, Gl 9 (5+4).
Initial treatment: Flutamide, Eligard, Dexamethasone.
2016- radiation therapy for prostate and seminal vesicles.
07. 2017. Enzalutamide.
2014- psa 1.13 (nadir) .... 1,54, 3.40.... 9,03.
2015 -psa from 16.10 ........49.46
2016- psa from 47.87..........140,60
2017- psa 345
19.05.2017.- PET: cancer infiltration on the bladder, visible metastases in the lymph nodes and bones.
19.05. 2017- psa 622
20.06.2017-psa 963.
17.07.2017. psa 1330.
24.07.2017-psa 2033.
18.09.2017. psa 8418.
05.12.2017. psa 16.401.
07.03.2018. psa 32.500.
30.04.2018. the patient died.
This story was written by the patient`s granddaughter.
Please, fight to the end, mayby some new clinical trials will help?
Have you tried fenbendazole along with the chemo?
I personally knew a gentleman in a local support group who had a PSA of over 12,000 (for an extended period of time according to him) who seemed to be managing well.
I was surprised he looked and felt that way (he was of a slim build - don't know if that was a factor).
It seemed unusual to me, but it also shows that a high PSA, in itself, at least for some, doesn't mean it's over. Of course, it can't be taken lightly.
Wishing you the best on your journey ....
There is the new anti-androgen Nubeqa (Darolutamide) which supposedly works with AR mutations. Might be worth giving it a try if you can get it.
Bob10• in reply to
Gregg57Where did you hear Darolutamide works with they are mutations
• in reply toBob10
Originally, I read this in the Wikipedia article about Darolutamide.
en.wikipedia.org/wiki/Darol...
That article says:
Darolutamide has been found to block the activity of all tested/well-known mutant ARs in prostate cancer, including the recently identified clinically-relevant F876L mutation that produces resistance to enzalutamide and apalutamide.[8] The medication shows higher affinity and inhibitory potency at the AR relative to enzalutamide and apalutamide in vitro (Ki = 11 nM relative to 86 nM for enzalutamide and 93 nM for apalutamide; IC50 = 26 nM relative to 219 nM for enzalutamide and 200 nM for apalutamide).[8]
Here's another article on the subject.
ncbi.nlm.nih.gov/pmc/articl...
However, there are important differences between darolutamide and other AR antagonists beyond the described structural features (Table 1). These include: 1) higher AR inhibition potency in preclinical studies as demonstrated by the lower inhibition constant (Ki) and maximal inhibitory concentration (IC50) values compared to enzalutamide and apalutamide; 2) darolutamide does not activate mutant AR such as AR(F877L), AR(W742L) and AR(T878A) which lead to promiscuous activation; and 3) darolutamide has negligible blood-brain barrier penetration as demonstrated in mouse PK studies, with a brain/plasma ratio of about 2% compared to 25% for enzalutamide,36 which may theoretically lead to improved central nervous system (CNS) potential adverse events.
You can search and find more:
Lu-177 ????
I did the Vision Trial with LU-177. It worked great for about 9 months but when it stopped working my PSA skyrocketed..I was hoping for a much longer lasting remission..At the moment, I'm going to re-test Zytiga and Cyclophosphamide. They were both still working when I stopped taking them ..Cyclo is an old chemo drug that's seldom used today.. We are traveling now, so this is just a stop-gap to get me through the summer when I return to home base (Denver) and a more workable solution can be hoped for...Thanks for your thoughts and suggestions..
Whatever you do.... all of us are in your corner rooting for you.... Bless you......
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/29/2020 2:37 PM DST
I've been taking, zyflamend whole body, motherwort, NAC, CO Q-10, RESVERSTOL, and vitamin D 3 along with allopathic medicine. ,( Xtandi & Lupron.)
Platinum based chemo might be a good choice. Have you done genetic testing? That might open door to A number of options in trial right now. I think I’d be more concerned as to where the cancer is than the PSA, even though that is a tough number to feel anything but scared about. If it truly is just in your bones, there should be some solutions. Don’t give up!
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