Lu-177: Has anyone in the group had the... - Advanced Prostate...

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Lu-177

Jeff3181 profile image
43 Replies

Has anyone in the group had the Lu-177. If so how effective has it been and did you have any adverse side effects?

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Jeff3181 profile image
Jeff3181
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43 Replies
Ramp7 profile image
Ramp7

Morning Jeff, I am in a trial study at Dana Farber for LuPSMA177. 68 years old. Been dancing with the beast for 15 years. Just had my fourth infusion two weeks ago, scheduled for a total of six. PSA has gone from 8.1 to 0.19. Fatigue is the only real noticeable effect on me. Each morning I hike at least 3 miles with my Border Collie. Relatively active life style with occasional naps to recharge during the day.

Seasid profile image
Seasid

I have read that because of the long term side effects of the radiation it is only recommended if your life expectancy is less than 8 to 10 years. Ask your doctor about it. You are very young.

Seasid profile image
Seasid in reply to Seasid

Some information from the internet about Pluvicto:

health.harvard.edu/blog/new...

tango65 profile image
tango65 in reply to Seasid

I wonder if you could post the links to what you have read about Lu 177 PSMA being recommended if your life expectancy is less than 8 to 10 years. I have read a lot about Lu 177 PSMA treatment for about 8 years and I never heard about what you mentioned in your post. I will really appreciate links to the articles.

Seasid profile image
Seasid in reply to tango65

health.harvard.edu/blog/a-n...

Seasid profile image
Seasid in reply to Seasid

LuPSMA was generally well-tolerated, but it also had side effects including fatigue, nausea, kidney problems, and bone marrow suppression. Dr. Hope says more research is needed to determine how and when to use the drug, "since if you have an eight-to-10-year expected lifespan, these side effects can be problematic."

tango65 profile image
tango65 in reply to Seasid

The comments in the article do not support your statement:

"I have read that because of the long term side effects of the radiation it is only recommended if your life expectancy is less than 8 to 10 years. Ask your doctor about it. You are very young.".

They do not recommend anything in the article. They suggest that longer follow up may be needed to see if long term side effects are caused.

All treatments have side effects or negative treatment related events and they can be problematic in 8 or 10 years or earlier.

Chemo may cause permanent peripheral sensorial and motor neuropathy and febrile neutropenia, anemia etc etc. Lupron may cause cognitive problems, zytiga may damage the liver etc. etc. One has to remember that tissues have the capacity to regenerate and if the damage is not very extensive some or total recuperation may happen.

Seasid profile image
Seasid in reply to tango65

You are welcome to write whatever you like about the article. People can read it themselves.

CurrentSEO profile image
CurrentSEO in reply to Seasid

Please let us know where you read something like that?

Seasid profile image
Seasid in reply to CurrentSEO

health.harvard.edu/blog/a-n...

Seasid profile image
Seasid in reply to Seasid

LuPSMA was generally well-tolerated, but it also had side effects including fatigue, nausea, kidney problems, and bone marrow suppression. Dr. Hope says more research is needed to determine how and when to use the drug, "since if you have an eight-to-10-year expected lifespan, these side effects can be problematic."

CurrentSEO profile image
CurrentSEO in reply to Seasid

Your conclusion from the article does not corresponds with author conclusion in my opinion and trying to scare people here based on your own conclusion if this article does not make sense. Also it is only article authors opinion and nothing more than that.

Basically any treatments: chemo, external radiation, long term androgen deprivation, surgery - all MAY have side effects for some worst than the others.

I would say that Lu-177 appears to me carry less side effects (especially if used early) than other SOC treatments. And I put my money and my health where my mouth is, by receiving it.

Seasid profile image
Seasid in reply to CurrentSEO

We all should do what we fill comfortable with. I wouldn't do it myself at this stage. I am not scaring anybody just giving you an opinion what I did find useful for myself. You are welcome to try it and report what's happened. Pluvicto is stil at his infancy so we all need lot of people to try to build up more experience. If you believe what my intelligent ex wife recommended to me that my goal is to survive as long as possible so I will be alive when the cancer cure is found. Pluvicto is not in that mindset to me.

Seasid profile image
Seasid in reply to CurrentSEO

In order to better understand the Lutetium treatment and possible toxicity there is a research paper about Lutetium PSMA therapy:

ncbi.nlm.nih.gov/pmc/articl...

CurrentSEO profile image
CurrentSEO in reply to Seasid

thanks I read this and many more before going this road.

Seasid profile image
Seasid in reply to CurrentSEO

Did you understand the article? Is it any relevance to your situation?

Some cancer centers refusing to treat low volume cancer with Lutetium PSMA treatment because of higher toxicity.

I always wondered why would everybody receive 6 infusions in a clinical trial?

Do you also believe that we have to learn more about Lutetium treatment? Everyone is receiving treatments 8 weeks apart in a clinical trial.

Why didn't they receive Enzalutamide or even chemotherapy in order to stop repopulation by the cancer?

In fact I was told by someone who was getting this therapy that they refused to give him Enzalutamide because they were interested how effective the Lutetium treatment is.

His treatment failed. (Maybe as a result of repopulation?)

I wouldn't want to get Lutetium or any other treatment similar to the Lutetium treatment until we know more.

Did you fully understand the relevance of the research article?

CurrentSEO profile image
CurrentSEO in reply to Seasid

I do understand 😉😅

I did three infusions 4 weeks apart. I don’t use insurance, I create my own treatment program. I’m my own doctor, other doctors either agree to be my assistants or never get hired … or fired fast. I respect, listen and debate with smart doctors opinions, but I direct my own treatments or no treatments. It is not always as successful as I would have hoped, but great quality of life. I’m not here to debate, each of us decide what to do. My treatments eliminated PSMA+ and left FDG+ , now I’m deciding on next step. Would avoid hormones if can. I don’t care to keep this body alive through suffering, when it is time to leave this body behind - I will.

If I need to choose treatment, after analyzing available info - I go with my feelings… not with statistic.

My personal opinion, Lu-177 should be first line of treatment in metastatic PC… do I have clinical trials to back it up? No … and I don’t care.

I will probably update my profile in a few months on where I’m and how it goes.

Seasid profile image
Seasid in reply to CurrentSEO

what do you think about J591 Lutetium PSMA infusions?

google.com/search?q=j591+lu...

CurrentSEO profile image
CurrentSEO in reply to Seasid

I don’t know , I will not dive deep into Lu PSMA anymore as I have to worry about FDG+/PSMA- cancer to find a solution for it. Dr . Onik looks like next destination

Seasid profile image
Seasid in reply to CurrentSEO

are your scans not concordant? Do you have a big difference?

CurrentSEO profile image
CurrentSEO in reply to Seasid

I already did Lu-177. My scans were somewhat discordant. PSMA+ Was eliminated, FDG+ still was there, so FDG+ start growing back fast as testosterone back to normal and I’m off hormones. Dr. Onik looks like next destination , as I want to avoid hormones👍 You can find in my profile more info.

Seasid profile image
Seasid in reply to CurrentSEO

could you or would you do chemotherapy?

CurrentSEO profile image
CurrentSEO in reply to Seasid

I don’t think I ever do it

Seasid profile image
Seasid in reply to CurrentSEO

why did you do Lutetium PSMA therapy if your scans were discordant? You know that the PSMA negative cancer will take over?

You should be under ADT and even better Enzalutamide if you want to experiment with yourself.

CurrentSEO profile image
CurrentSEO in reply to Seasid

😅 thank you doctor for advise what I should do 😉

Seasid profile image
Seasid in reply to CurrentSEO

would you like to consider one of the following clinical trials? (Clinical trials are good as you are closely followed by top oncologists):

clinicaltrials.gov/ct2/resu...

CurrentSEO profile image
CurrentSEO in reply to Seasid

nope, trials are last resort if I ever go this road. Now in my agenda to put “fellow “ into remission without hormones 👍

Seasid profile image
Seasid in reply to CurrentSEO

did you ever had ADT? If not you could start with Firmagon injections starter kit 2x120mg and you cancer would collapse. 2 months after that you could have an early chemotherapy 6 cycles of Docetaxel and Nubeqa from the very start. It is not too late.

Can you please tell in one sentence what therapies did you have untill now? Your profile information is too long and I couldn't go through. Sorry it is a problem with this site and my mobile phone. Your profile is simply to long. You should givr us a short summary.

CurrentSEO profile image
CurrentSEO in reply to Seasid

profile is detailed fir a reason, I have no time to summarize what I already written in my profile, sorry.

Seasid profile image
Seasid in reply to CurrentSEO

Could you just simply list now which treatments did you have?

CurrentSEO profile image
CurrentSEO in reply to Seasid

responded to you on your private message. Trust me if I need help or advise - I’m not the one who would hesitate to ask. Thank you for understanding!

Seasid profile image
Seasid in reply to CurrentSEO

it is not really for me.

I finally went through your profile but not everyone who wish to properly respond to you has enough time.

noahware profile image
noahware

Like Ramp7, I also am in the Novartis trial study at Dana Farber. I just had my second infusion and cannot yet say how effective it is (PSA down, but scans showed mixed results). Similarly, fatigue is the only thing I've noticed, primarily in the first week after a dose. It is not severe at all.

whwalker1 profile image
whwalker1

I just had my second Lu-177 infusion. My PSA went from 266 to 361 6 weeks after first infusion. Only side effect has been fatigue.

I had 3 treatments of Lu177 and unfortunately it did not work for me. My understanding is that it reduces PSA and cancer burden in roughly 1/3. Another roughly 1/3 get a stabilization of their PSA and cancer burden. Another roughly 1/3 get no benefit.

The side effects are somewhat favorable to other treatments, however it is a form of radiation and it can seriously effect blood marrow. This was observed in 13% of cases and required blood transfusion. I have had to have multiple transfusions as a result of the treatment and/or the cancer progressing relatively fast.

It is important to know your PSMA avidity to your total burden before treatment. I had both a PSMA scan and non PSMA scan before and was told I had good results? In my case, the treatment appears to have treated the PSMA avid cells, but the non PSMA cells have taken control.

I think there is more that needs to be understood, however, I think it is a good treatment for most to extend life for a limited time. Good luck in your journey!

Seasid profile image
Seasid in reply to

Research paper about Lutetium treatment toxicity:

ncbi.nlm.nih.gov/pmc/articl...

Better to know what you are doing.

whwalker1 profile image
whwalker1

Did your blood transfusions have any effect on your PSA?

ARIES29 profile image
ARIES29

I had 2 infusions of LU-177 here in OZ. It worked for 2 years, bringing the PSA from 19.6 to 3.6 but then PSA was back up to 18.Side effects for me was stomach ulcer pain came back to life & the arthritis in my right knee gave me pain on the second infusion.

j-o-h-n profile image
j-o-h-n

Greetings Jeff3181,

Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.

Note: Answers are for your benefit, not mine.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/19/2022 9:42 PM DST

tango65 profile image
tango65

I had treatment with Lu 177 PSMA when the cancer was mCSPC.

I had the treatment in Munich in 2016. There were lymph nodes metastases only, extending from the pelvis behind the rectum to the retroperitoneum up to the renal arteries.

One infusion of Lu 177 PSMA was enough to control all the metastases which remain PSMA negative until today according to 5 subsequent PSMA PET/CT studies. The only side effect was fatigue which in my case lasted for about 24 hours.

There are a lot of confusion in this group about Lu 177 PSMA treatment. It is not a cure, neither is chemo or all the new ant androgens, keytruda, olaparib , rucaparib, Provenge or Xofigo. In selected patients, Lu 177 PSMA has been shown to be as effective, some may say more effective than chemo with Cabazitaxel, in patients who failed the new anti androgens.

It seems to be very effective when used early , particularly if only lymph nodes mets are present.

The 4 months extension in overall survival came from the Vision trial. Xofigo, and chemo have a similar survival benefit in mCRPC.

The patients in the Vision trial had mCRPC. They have failed new anti androgens and chemo (once or twice). Some of them may have had diffuse bone marrow infiltration given the bone marrow complications seen in the study.

Lu 177 PSMA treatment may not be indicated if there is diffuse bone marrow infiltration, low PSMA expression in the mets (SUV less than 9 or 10) or lower than the SUV in the liver and discordant lesions when the PSMA PET/CT is compared when a 18 F FDG PET/CT showing metastases not seen in the PSMA PET/CT (PSMA negative cancer).

If there is not diffuse bone marrow infiltration according to the PSMA PET/CT and the other conditions are also met, Lu 177 PSMA treatment may be effective without significant side effects.

Since there is PSMA expression in the proximal renal tubules the kidneys may be eventually affected. In the absence of diffuse bone marrow infiltrations, kidneys problems seems to be what limit the number of treatments with Lu 177 PSMA.

Re challenge with Lu 177 PSMA has been done in selected patients with positive results.

CurrentSEO profile image
CurrentSEO

That is my recent report about Lu-177 treatment healthunlocked.com/advanced...

zengirl profile image
zengirl

Okay. My husband has been a prostate cancer patient with no remission since 1997. He has been on everything. Two infusions of Lu-177 last summer. He was 76 at the time. He also had an infected port. Not sure what was the issue but 3 days after his second Lu177 he had to have surgery to removed infected port. His weight dropped dramatically and we almost lost him - I personally think it was from the surgery and not the Lu177. This summer he is doing much better - weight has gone up and PSA is undetectable. He seemed to have worked for him. We had it done at UCLA. We are no longer with the prostate cancer group we were with for almost 24 years since they no longer accept our insurance and want me to get expensive insurance. We are back with City of Hope and he has his first appointment there today in years. We will see what the PSA is. After the first Lu177 there was fatigue. He already had a loss of appetite from Lynparza which took away his sense of smell and taste. I didn't know about the 8-10 rule. By the way, if I listened to all of the rules that the doctors gave me, he wouldn't be here today. In 1997 we were told he had a year and a half to live. Go for it. I hate insurance. I was able to get the PSMA finally covered but I spent a summer on the appeal to Blue Shield. good luck to you,

Seasid profile image
Seasid

better to know what you are doing, a research paper about Lutetium treatment toxicity:

ncbi.nlm.nih.gov/pmc/articl...

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