Looking for a second or third opinion. - Advanced Prostate...

Advanced Prostate Cancer

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Looking for a second or third opinion.

Costarica1961 profile image
32 Replies

I will be starting LU 177 on the 23rd of this month. I am optimistically diving in with both feet. Does anybody know the studies done with the combination of LU 177 and actium 225 Isotope or radium 225 if there is any treatment benefit. according to my onc there is no scientific evidence of benefits, although I am aware in germany they use this combo with regularity. In addition should I discontinue my zometa infusions while taking LU 177. And lastly, the importance of the FDG F. 18 scan to determine the effectiveness of the Lu 177 treatment. I was told none of these approaches are relevant, and was summarily dismissed. Please someone shed some light. Thank-you fellow myth busters.

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Costarica1961
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Javelin18 profile image
Javelin18

The only aspect I can comment on is the FDG scan. Lu-PSMA therapy is known as theranostics, a mash up of therapy and diagnostics. Scans of the cancer prior to treatment are used to judge the likelihood of successful treatment.

Since the Lu -PSMA only attaches to PSMA expressing cancer cells, it doesn't kill non- PSMA expensing cells, unless they are right next to the PSMA cells. There is some overshoot of the beta particle that can irradiate up to 125 surrounding cells.

The overlap of the PSMA and non-PSMA is called concordance. Studies show that higher concordance predicts better outcomes.

To judge effectiveness prior to treatment, it is standard practice to compare PSMA scan to another scan that shows all cancer. The general scan can be an Axumin or FDG scan. TallAllen advocates strongly for choosing FDG rather than Axumin.

Costarica1961 profile image
Costarica1961 in reply to Javelin18

Thankyou, best of luck and good health

I recently completed a trial at Weill Cornell, using a triple therapy of Actinium223 + Keytruda + Xtandi. After 24 precious weeks I was removed as it was deemed ineffective for me due to my disease progression.

You will find numerous posts on this forum addressing LU177 effectiveness. It definitely does not help everyone as with all treatments.

Costarica1961 profile image
Costarica1961 in reply to HopingForTheBest1

Whats next for you. I hope theres a plan B

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Costarica1961

We all need a plan B. I just started last week my first chemo combo treatment of Cabazitaxl and Carboplatin.

Costarica1961 profile image
Costarica1961 in reply to HopingForTheBest1

I did this combo and worked a year, I tolerated it pretty Well, good health my friend.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Costarica1961

Sorry to hear that you only got one year out of it. How many rounds did you have?

I have been told it can be very effective for those of us who are BRCA2+. I found one of your posts where you did say that you are also BRCA2+. Have you been treated with a PARP drug? I was on Olaparib for almost 2 years, keeping my PSA undetectable until it ran its course.

ellie2211 profile image
ellie2211

I am wondering this as well....

My dad is Currently getting lu-psma but he has predominantly bone Mets. Is actium 225 available in the U.S.?

Costarica1961 profile image
Costarica1961 in reply to ellie2211

I believe so in clinical trials. There are links on this forum too direct you to them. Good health to you.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to ellie2211

It is available for clinical trials, but is in short supply. I had to wait many weeks for my trial to start because of that. Also, the short life of AC225 is definitely a challenge for treatments.

Costarica1961 profile image
Costarica1961 in reply to HopingForTheBest1

Interesting too know, that bscks up my oncs comments but yours are more direct and understanderble thankyou.

RusLand profile image
RusLand

Hello, Costarica1961! My opinion remains unchanged, I voiced it to you earlier! Without determining the status of cells with PSMA(-) using 18F-FDG, the probability of success of your treatment with the PSMA-617 ligand will tend to 50-50! I have my own statistics on the experience of soon 30 patients whom I helped to get into treatment with the help of the PSMA ligand and all of them were examined for PET-CT with 18F-FDG.. The result is the ratio of patients with PSMA (-) to those with FDG (-) = 50-50! 30% of patients from this number were denied treatment due to hopelessness! And these were patients who were ready to be treated for money! With metastatic castrate-resistant prostate cancer and especially with mts in the bones, the radiation power of 177Lu is not enough and for this reason 225Ac is added to the circuit, the radiation power of which is 12 times higher! If treated using 225Ac monotherapy, the lacrimal and salivary glands suffer very much.. So much so that the patients who passed it no longer want to live..(( For this reason, many centers have abandoned Actinium monotherapy in favor of a cocktail of 177Lu + 225Ac.. Here is a link to this study: link.springer.com/article/1... ?fbclid=IwAR1nUMPrdRBsyAsN3gweEiJCUgbV7XB8P8u5lt__3gfzufNjoc2IN67Atw4

Costarica1961 profile image
Costarica1961 in reply to RusLand

Thankyou, my onc dismissed the scan and said the data is still out on actium 225 which of course I had to question. Realizing what you stated. The oncs sometimes try too pat you on the head and hope you stop asking So many damn questions it seems thats why it was nice to have the ammo you gave me.

RusLand profile image
RusLand in reply to Costarica1961

Yes, unfortunately, doctors who still have little clinical experience working with PSMA labeled with radioisotopes Lu and Ac do not quite understand the essence of this therapy..((But, here's another grenade for your doctor..)) This link was kindly posted here by T_A, I only saved it for such cases! Maybe you'll need it.. Good luck and God bless us all!

prostatecancer.news/2019/12...

Cosmo3 profile image
Cosmo3

I’m currently receiving Actinium 225 treatments in Germany after Lutetium 177 failed me. The Ga68-PSMA-PET/CT scan or F18-PSMA-PET/CT scan are required to measure PSMA expression which can determine the effectiveness of the purposed treatment. It also will be used to measure progression of the cancer. The hospital that I’m receiving treatments did not use AC 225 and LU177 cocktails. University of Heidelberg however uses them effectively. I’m seeing benefit from the AC225 so far but the verdict is still out since it is only my 2nd dose. My PSA dropped from 1580 to 186 in 6 weeks after 1st treatment. However it went back up to 658 by 8 weeks when I check into the hospital for my 2nd dose. It is now 458 and I will get my 4 week reading this week and a PSMA-Pet/CT scan next week. I’m schedule for my 3rd dose on March 14th. My opinion is that this can be a very effective treatment if you have the right type of PSMA expression and it is definitely worth the effort. I have met individuals form the USA in Germany that have had bone mets and were successfully treated with just 2 doses of LU177. If your scans show high PSMA expression, I would differently try it. I can also tell you that they will not give you this treatment if you don’t have PSMA expression. I hope that this was beneficial for you. Good Luck

RusLand profile image
RusLand in reply to Cosmo3

Hi! You made a mistake in the text by writing "F18-PSMA.." Probably still 18F-FDG..?! The question is, what was your status to the FDG..?! I have completed 4 courses of Lu+Ac-PSMA and I consider my FDG status(-) to be a good success of my treatment...

Cosmo3 profile image
Cosmo3 in reply to RusLand

Hi,To tell you the truth I really don’t know my FDG status but I will ask next week. My first PSMA PET scan was performed in Germany while my 2nd one will be in the USA. The two types of scans that I listed were exactly what my German doctors requested to my Oncologist in the US.

RusLand profile image
RusLand in reply to Cosmo3

Well, in general, and in general, you have confirmed that medical centers of excellence, which have been engaged in clinical practice for treatment with the PSMA ligand for several years, require the results of both PET scans, both with PSMA and with FDG, to assess the expected therapeutic effectiveness of the upcoming treatment with radioisotopes! Thanks!

Costarica1961 profile image
Costarica1961 in reply to Cosmo3

I am not it matters of much since this is a one and perhaps done. Maybe one more option. Thank you

Costarica1961 profile image
Costarica1961 in reply to Cosmo3

Not sure it matters

Costarica1961 profile image
Costarica1961 in reply to RusLand

Ok thxs

GP24 profile image
GP24 in reply to RusLand

I think he made no mistake with F18-PSMA. Here is a report of that being approved in the US: fda.gov/drugs/news-events-h...

RusLand profile image
RusLand in reply to GP24

18 F- PSMA-1007 is not the same as Piflufolastat F 18, which is referred to in the link you provided! In any case, what is the reason to determine the positive status to PSMA receptors with the help of two PET-CT studies? The task is to find PSMA(-) cells! And here we need exactly 18F-FDG!

GP24 profile image
GP24 in reply to RusLand

The PSA value should be well over 10 ng/ml for a successful FDG-PET. If your PSA value is that high, it makes sense to have a PET/CT. By the way, you could also detect PSMA negative cells with a Choline PET/CT.

RusLand profile image
RusLand in reply to GP24

PET with choline will be ineffective for searching for PSMA(-) for the reason that choline will accumulate equally in both malignant prostate tumors and benign ones (adenoma).. Moreover, choline accumulates in highly differentiated hepatocellular cancer and glial metastatic brain tumors! I think that the status of FDG has nothing to do with the level of PSA.. The nature of neuroendocrine cells that accumulate FDG is completely different from those that have PSMA receptors on their surface! For clarity, here is my negative status to FDG at a PSA level of 213 ng/ml:

PET-CT with FDG at PSA 213 ng/ml
Costarica1961 profile image
Costarica1961 in reply to GP24

Mine is moving up 19 from 1.6 two weeks ago.

MateoBeach profile image
MateoBeach in reply to RusLand

Actually F18 is also the active isotope in Pylarify (USA approved brand of DCFPyL) for PSMA targeting PET scans as an effective alternative to 68Ga-PSMA scans. So the shortened term is reasonable. Thanks for all you are contributing on this topic and doing for others!

RusLand profile image
RusLand in reply to MateoBeach

Thanks! Yes, I know that the 18F isotope is used in the Pylarify preparation and I know that it, like 68Ga-PSMA, is aimed specifically at PSMA(+) cells! But the question was which rfp is the best way to find PSMA(-) cells! And here, of course, the RFP 18F-FDG is the best!

Bangkok profile image
Bangkok

I'm not a doctor so I am lost with all the treatments but all I have is my own story. I've had 4 rounds of Lute-177 and it cleared up all of my Mets including one huge mother on my spine. Unfortunately, I was still left with my prostate cancer though diminished. I then had 20 rounds of IMRT which proved effective. I now have a PSA of 0.01 and holding through quarterly shots of leuprorelin.

Costarica1961 profile image
Costarica1961 in reply to Bangkok

Thats encouragement thanks

in reply to Bangkok

Hi Bangkok, may I ask where you got Lu177? Thank you

Bangkok profile image
Bangkok

Samitivej Sukhumvit Hospital

133 Sukhumvit 49

Klongton Nua, Vadhana

Bangkok 10110 Thailand

(66) 2 022 2222 Ext. 22178

samitivejhospitals.com

You need to contact Pat Donavanik she is in charge of internationals.

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