Lu-PSMA-617

[Ecl875]

How can PSMA targeted therapy be termed “ground breaking” when it offers only four more months of life compared to the control? I’ve read of those who travel to Australia and Germany to get the treatment ( soon to be approved here). For me this would not be worth it. Perhaps the advertising doesn’t quite live up to its claims…

[Tall_Allen]

It adds 4 months in heavily treated patients, also reduces pain and organ obstruction. For this kind of patient, that's as much as any therapy provides. Usually therapies that work this well in heavily pretreated patients, work much better if used earlier (e.g., Taxotere, Zytiga, and Xtandi).

[andy909 in reply to Tall_Allen]

Have you heard of anyone taking pt117?what are the side effects? Do you die from it?

[Tall_Allen in reply to andy909]

Never heard of it. What is it?

[Ausi in reply to Tall_Allen]

TA, regarding statistics, Is the additional 4 mths after the completion of the dose cycle, for example, if you get 6 doses at one a month then you get 6+4 = 10 months compared to none at allThanks

[Tall_Allen in reply to Ausi]

The additional 4 months is compared to how long one would live on standard of care.

[Ausi in reply to Tall_Allen]

Thanks, I think I get it, it’s a comparison of those that had this treatment and those that haven’t ie have just had only SOC.

[Fairwind]

As a "Vision" trial graduate, I would like to ad the fact that the side effects associated with LU-177 can nullify any benefit. Especially the destruction of bone marrow leaving the patient extremely anemic. and requiring transfusions (expensive) to maintain any sort of QOL. Yes, it was effective against my cancer but it also created other serious problems..

[AlanMeyer in reply to Fairwind]

Hello Fairwind,

I wasn't aware of the anemia side effect, however I read that it's "common", meaning that between 1% and 10% of patients experience it ( drugs.com/sfx/lutetium-lu-1... ).

Can you tell if it is getting better since your treatment? Do the oncologists expect it to clear up completely, partially, or not at all?

[Cheerr in reply to Fairwind]

Hi Fairwind,

Yes it’s unfortunate that bone marrow compression is a serious side effect… so those with already compressed marrow or low blood levels can never consider this.

How have you been doing?

[andy909 in reply to Fairwind]

Greetings Fairwind. I am about to start LU117 treatment can you please let me know what to expect? I realize everyone is different, but I would like to hear about your experience with LU117. Thanks, Andy909

[Hidden]

it needs further development. it may be better as an early treatment. not as a late treatment. but unfortunately, we have the Dr. Fauci types running our government medical bureaucracy so don't expect anything spectacular soon. But Biden says he's going to cure cancer, so there's that..

[spencoid2 in reply to Hidden]

This is not a political forum. I do believe there is a lot of room for improvement in out health care "system" but this is not the place to discuss it. Moderators may have a different opinion but I use this forum to find information to help me deal with serious health issues. If I want to discuss political issues there are plenty of forums for that.

[Cooolone in reply to spencoid2]

Ok I'll bite...

It is a healthcare forum that is open. I missed the part where it prescribed that some have the ability to dictate to others what they should post or what their opinions should be, should they wish to use the forum. I value all opinions and ignore those which I find disagreeable, but I do accept that everyone is free to express their thoughts, opinions and knowledge, especially without being trampled down because someone else disagrees.

I've posted quite a few opinions regarding the FDA, am I wrong to do so? Just curious? Or is it, the above post objectionable to you because it names, names?

We could revert back to examining and discussing how Nixon directed the U.S. Govt to find a Cure for Cancer as well... So long ago.., what happened in between, and where we are today. It would be a worthy and valuable discussion! Maybe in another thread all it's own though, lol.

For the record, Dr. Fauci has been recently exposed and compromised. He has now suspect integrity, entirely based upon revealing communications that have shown he did one thing, while informing the general public of another... Can't say anything good about that and it directly impacts our health, for sure! For the matter, I never trust one source of information and even early on in regard to the Covid outbreak, I got my information from multiple reliable sources, not just the U.S. Govt., Anyways...

And yeah, well, I hope Biden spends a few Trillion towards curing cancer, like all the rest of the Free $$$ he's giving out. We would all benefit from that with little doubt! And that includes everyone on any side of the political spectrum.

There is relevance to the OP as it mentions the need to travel to another country in order to obtain the therapy noted. And although not completely culpable is the current administration in this regard, it is because the policies and administration of health care here in the U.S. as directed and controlled by the Federal Govt. It is a shame really, in my opinion that Cancer Patients need to go to these extends at all. We all fall under the SOC and is very difficult to escape it's grip. Individualized treatment for the most part is not obtainable as it might be elsewhere. And that "IS" a problem... Especially for advanced patients or those with poor prognosis and or rare conditions which fall outside the "norm" that the SOC seeks to establish! We all know that cancer is heterogeneous and that the SOC is a disservice at some point. And as patients we shouldn't have to wait until there's nothing left to try, or wait until the FDA says ok, gee, sure, it's alright go ahead. And as unfortunate as it may be, those in charge always get the tomatoes thrown at them!

Lol

[Hidden in reply to Cooolone]

Sounds kinda like a cult member response.

[spencoid2 in reply to Cooolone]

I have seen forums get out of control once a political thread gets going. history is not politics. i think that the history of health care (as relevant to the groups focus) is certainly a reasonable topic for the group. And yes, it was the names that made it political.

[dadzone43 in reply to Cooolone]

EVIDENCE for exposed and compromised?

[AlanMeyer]

Hello Ecl875,

I don't know whether to describe four months as ground breaking or not, though I agree with Tall_Allen in thinking that the value of a treatment is relative to other treatments and other effects besides life extension. Also, I think the value of four months of life is different for a person looking at death next month as compared with someone who has years and years ahead of him.

One thing that I think we've seen with cancer treatment is that different people respond differently to the same treatment. About four months is the median life extension in the VISION trial. That means that half the patients did worse but half did better. As with hormone therapies, chemotherapies, and immunotherapies, Lu-177 is something of a crap shoot. We have ideas about who will benefit from each type of treatment, but we have very little exact information. Having an entirely new type of treatment, like Lu-177 is of special value for men who are not doing well on other therapies and need to roll the dice.

[Schwah]

One interesting aspect of a four month “median” increase in survival, means that the time half were dead in the control group was four months sooner than the time half were dead in the group with the LUPSMA treatment. Now if the half alive in the LUPSMA group live much longer than the half that were alive in the control group, that four-month median survival advantage would be unchanged. A longer-term look with the waterfall chart as to deaths after the first half were dead , would tell us a lot more.

Schwah

[Danish-patient]

PSMA Lutetium has kept my aggressive cancer in control now for five years based on 11 cycles of that treatment spread over those years. The Vision study used a set number of a few treatments - and then stopped to see what happened.

[austinsurvivor in reply to Danish-patient]

I'm interested to know where you were treated and if you were on ADT during treatment? Thanks!

[Danish-patient in reply to austinsurvivor]

I received all cycles of PSMA lutetium at the university hospital in Innsbruck. I am castrated through surgery and have taken Zytiga for the last six years. So almost double ADT…

[Claud68 in reply to Danish-patient]

Hi, it's very great. How did you manage the 11 lu177 treatments? Several times a series of three and a year later another series of three shots? Or six the first year and the next ones later?My husband had three treatments with Lu177 in 2019 and no ADT. Now he has 4 mets and needs again Lu177 treatments.

Where have you got your Lu177 injections? We paid a lot in Austria to get the treatment.

Thanks in advance for your reply.

Claud

[Danish-patient in reply to Claud68]

The cycles have been in series of two treatments 4-6 weeks apart, then a break of 6-18 months dependent on PSA development. I also paid for each treatment in Innsbruck, Austria. Lots of money. But I am still alive, so it’s worth the expenses.

[Claud68 in reply to Danish-patient]

Thanks. How much did you pay for each treatment? We paid 13.000 euros each.

[Danish-patient in reply to Claud68]

It was a little bit cheaper for me. The costs has spanned from 9000 euros in the beginning to now 10500 euros. Plus traveling costs driving my autocamper from Denmark. The last cycle happened three weeks ago and we supplemented with vacation in northern Italy, just two hours drive south from Innsbruck

[chips1942]

It seems many of us with metastatic PCa will have to weigh the potential long term benefits vrs side effects of the treatments available as our cancer progresses. Certainly, ADT, chemotherapy, radiation etc. all can affect both the quality and the length of our lives.It is unclear how Lu 177 affects bone marrow. Does that occur because the PSMA molecule is drawn to PCa in the bones & takes the LU 177 to the bone marrow? What if the metastasis in only in the soft tissue or organs? Is the bone marrow still compromised?

[Nukepharmd in reply to chips1942]

Once again Lu-177 is a beta emitter meaning the radiation will affect everything around the tumors in a distance of 2.5 cm or ~ 1in. The radiation doesn't care what it touches good/bad tissues it just radiates which means destruction! Think that before prostate cancer none of us wanted to be exposed to radiation of any form, i.e. sun/xray. Notice how every one that treats us are always wearing protection? I was exposed to alpha/beta/gamma radiation for 11+ years and even though my badges said I was working safe here I am with cancer without a family history.

[austinsurvivor in reply to Nukepharmd]

as a patient who underwent 2 rounds of Lu117 treatment, the treatment may work for some but it is largely determined by your genome. The beta particles that are released during decay can break dna strands (not kill cells), with either single or double breaks. Your body has the ability to repair these breaks, especially the single strand breaks. It is usually the patients with BRCA2 and ATM defects (ability to repair dna) that respond the best but that is only around 10% of patients. New alpha particle treatments, using PCa only antibodies, currently in trials will have a much better chance of killing cells as the higher energy and mass of alpha particles will make cell repair almost impossible.see - mskcc.org/news/precision-st...

[RS265 in reply to Nukepharmd]

So Prof Michael Hoffman, one of the leading researchers in this area states the energy is only effective over 1mm (25 times shorter than you state). It does emit in all directions so there can be collateral damage. But double strand DNA strikes are what count. Good interview article in this June's Prostapedia where he mentions that few of the orginal test subjects are alive and also discusses the possible future role of LU177 in early treatment.

online.flippingbook.com/vie...

Now he was kind enough to give me a no charge consult when I went BCR in 2016. He spent over an hour on a deep dive into LU177 and its mechanisms of action ( and why at that time they tought it wasn't viable at my stage). I found him honest, humerous and deeply pragmatic.

[Cooolone]

Four months... Yeah, maybe not great when QOL suffers. But 4 months has value when there are those who would give all, for just another day! 4 months today may extend to many more with further development and exploration... Who knows.

[Fanger1]

I think the advancements in targeted treatment are just at their beginning and have hope as more research time is put into it the outcomes will improve. Perhaps another hammer can be attached to the delivery system.

[Karmaji]

Since 100 years while medical research neglected the patient and concentrated on treating disease. it does not matter how toxic the treatment is .This immoral a d wrong approach is so alive in the scorched earth medical approach.Why thes guys employ LU 177 therapy to the dying why not

earlier...

Why not use targeted techniques to send Lu177 only to psma cells

Possible to use platelets liposomes as carriers

which are not eliminated by immune system.

Why not add nutrition, exercise, mind body therapies right from beginning....alas doctors are fully unaware as there is no money

Why all cancer patients are not treated equally irrespective

of insurance

In France all Cancer patients are treated equally irrespective of their private insurance..

A shame to a system which has no respect for suffering cancer patients...

It seems on this forum we have only rich cancer patients for whom finance is of no problem

Let us openly share our thoughts

which are unique to each as PC has different journeys for each of us....

as all clinical studies show

some die early who cares

some live longer..we call it success thru eyes of inhuman numbers....

I am a human being with emotions....not an anonymous averaged quantity...when this vision of patient be integrated

in mind set of medical profession .

Sure we can develop therapies with no toxicity....but that requires a new mindset....

One day we shall have holistic

therapies where patient is the person to be cured ...

[AlanMeyer in reply to Karmaji]

Hello Karmaji,

I can answer a few of your technical questions.

Lu-177 is targeted just to cells with PSMA . The targeting is done by attaching the Lu-177 atoms to molecules that bind to PSMA (and as far as I know do not trigger immune responses) and the complex is then injected into the blood stream. With a half-life of about 6.7 days, most of the molecules find and attach to PSMA bearing cells before radioactive decay occurs. Only small amounts decay before reaching tumor cells. Using blood liposomes as carriers, if I understand the chemistry, would be much, much less precise since the liposome membranes have no chemicals in them that would recognize and bind to PSMA bearing cells when they pass them.

I think you and I are more in agreement about the insurance issues. I agree that the French English, and many other government organized insurance systems produce better outcomes at lower cost than the chaotic U.S. systems in which some people have good insurance, some have bad insurance, and some have none at all. I hope we can improve that over the years but it's going to take major political efforts to convince voters to support more government insurance - which shouldn't be confused with government doctors.

Finally, I'm not as pessimistic as you are about the efforts of the scientists to help cancer patients. I've met a fair number of scientists at the National Institutes of Health and National Cancer Institute (part of NIH). I was computer programmer, not a scientist, but I think most of the people I met there, and in work I did for the DoD Prostate Cancer Research Program, were pretty dedicated people. Some of them are astoundingly brilliant and knowledgeable about the chemistry and biology of cancer. We haven't got the best insurance system in the world, but we've got a lot of great medical scientists and a lot of the great discoveries in medicine in the world do come out of the U.S.

Alan

[Karmaji in reply to AlanMeyer]

Thanks for clarification as liposomes do not recognize PSMA.....interesting immune system wont stop Lu177I have great respect for science, being myself a scientist....

The point I was saying that road to produce molecules with toxicity is not correct one.

The medical research should be oriented towards curing the patient and not the disease.

The docs are simply oriented towards the disease with no sensitivities for patient as a living human being...We could do much better .. It is a question of mind set in research....

Same goes for scientists making bombs and bombs for my country first with no sensitivity to human beings who are same all over....Well c est la vie....

[GregHouston]

In 2018, the FDA approved the drug Lutathera (LU-177 Dotatate) for the treatment of neuroendocrine tumors (NETs) affecting the pancreas and gastrointestinal tract. So, there is some early documentation on LU-177 effect on bone marrow, etc.

Before I started on LU-177, I asked Dr. Sen if there was a possible long-term bone marrow damage from this radiation treatment. She wrote that she had not seen any long-term bone marrow suppression, but LU 177 has mostly been used in end-stage disease, and there is not too much long-term data available.

"However, drawing a parallel, there is about a 5 - 6 % of myelodysplastic syndrome seen in patients of neuroendocrine tumour (a kind of tumour of the intestines/pancreas) who usually undergo treatment with lutetium much earlier on in their disease course. So theoretically, yes you could have a 5% risk of long-term bone marrow issues since we expect you to live for a long time following therapy,” she wrote.

[Teddysdad]

I think the words “ground breaking” come more from the media rather than the medical sector although I am sure that there is a lot of guilty parties in the medical sector as well!!

Lutetium has also been around for a while now and has been used to treat other cancers for a long time so again not “ground breaking”, more of a repurposing!!

However, I can only sing the praises of Lutetium which I have been on since August 2019, so almost 18 months.

And while I can never know by how much this has extended my life; I do feel it has and would think by at least a year. I have had 8 treatments and fortunately have not suffered from too many side effects and would say that my quality of life is good.

I started the treatment with a PSA of 1.585 and was for the most part fit and healthy and I think being fit and healthy really contributes to how much Lutetium helps. My PSA is now around 295 and so I have some challenges ahead as the Lutetium is no longer working.

Lutetium was never a cure, but it has given me more time that I and my friends & family are making the most of.

[tallguy2]

Read the fine print for abiraterone. Same thing applies. The median increase in survival (that is, the 500th man out of 1000) was similar to PSMA targeted therapy. Is it worth it? Ask the men in the top half of the trial. It’s sometimes about quality of life, too.

My father and I cried together when he started on abiraterone and read the median numbers and the cost to him and the insurance company. He asked me if it was worth it. Hell yes I told him. I got to spend another 18 months with my dad.

[Hidden]

And super expensive no doubt.