Experience with LU177: Since LU177 is... - Advanced Prostate...

Advanced Prostate Cancer

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Experience with LU177

julyturqsee profile image
11 Replies

Since LU177 is approved by FDA, I will go for this treatment . For those who have had experience with it, please talk about # of treatments, side effects, and efficacy. Just completed 8+ infusions of Chemo (Doce, Carbo, Cabi): my aggressive cancer is spreading. thank you.

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julyturqsee
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Javelin18 profile image
Javelin18

I had the treatment as part of the early access program. Unfortunately I wo part of the statistical third that didn't get a drop in PSA and ALP. Subsequent scan showed that it had been effective at killing the PSMA expressing cancer, and non-PSMA expressing cancer in close proximity. I had new cancer grow in different bones.

I would still recommend it,,since 2/3 of patients see a better effect than I did.

I had minimal side effects during treatment, mainly inflammation in the area's where the cancer was being killed. I used a wrap for toothaches that holds ice packs on the jaw. I don't have problems with dry mouth during the day, but my mouth opens while I sleep and it drys out. Drying out wasn't a problem before all my various treatments.

julyturqsee profile image
julyturqsee in reply to Javelin18

thanks Javelin. Just reviewing the SE described in Tall Allen's Lu 177 link, they are scary/onerous. btw, he's tested positive for PSMA (the scan). Now he's very fatigued after the aftermath of chemo & Zytiga plus Lupron so hoping he's able to withstand LU. Nothing's a walk in the park.

Javelin18 profile image
Javelin18 in reply to julyturqsee

Your welcome. I understand the physical and mental fatigue that cones with multiple treatments. I've been through most of the standard of care treatments in about 15 months. It can be hard to gather the strength and resolve for the next treatment.

I did have a much easier time wi Ku than with chemotherapy. I think it makes a big difference that it is targeted, rather than attacking all dividing cells throughout the body.

Costarica1961 profile image
Costarica1961

I will have my second dose on 4 6 22 I have experienced very difficult full body pain flares on a high level. Just started fyntanal patches last night, it seems to be helping so far, although it hasnt reached its peak pain relief yet. Nausea and lack of appetite mainly because of the pain are Happening . I believe its stirring the pot of many mets up and causing turmoil and toxic reactions, but thats just my thoughts.

Ramp7 profile image
Ramp7

My experience has been good. After Lupron / Zytiga / Prednisone then Dexamethasone, rising PSA doubling time 3 months, entered Trials at Dana Farber. Dr. Beltran and her team are truly little angels. I have been to a couple of Hospitals in the Northeast and this group is very special. I have received two of a total of six infusions to date, that have been well tolerated. No I'll side effects. Blood work taken weekly. Still on Lupron so, T is very low. Zytiga and Prednisone where dropped prior to the treatment. PSA has dropped from 8.1 to 1.8 the last PSA test, a couple weeks ago. Still have hot flashes and fatigue. I've gotten use to both and take them in stride. As with many of the therapies we entertain, there is no free lunch. There seems to be a personal cost for each intervention. I hope this helps in understanding LuPSMA617 potentials.

RusLand profile image
RusLand

Hi! I have experience in therapy using the PSMA-617 ligand, I have completed four courses under the 177Lu + 225Ac - PSMA-617 protocol. The results are excellent, the PSA fell from 212.9 to 0.213 and continues to fall for 9 months in a row, now my PSA level is 0.055. See my schedule below! In addition, I have access to the medical documents of more than 20 patients whom I helped to undergo this treatment in Baku. As Javelin18 30% of patients correctly noticed, this therapy does not help, and in some cases even accelerates oncological processes due to the rapid replacement of PSMA(+) cells destroyed by radiation with PSMA(-) cells.. For this reason, in the center where I was treated, it is mandatory to undergo two PET-CT studies with rfp 68Ga - PSMA-11 to determine the positive status to PSMA and a second study with RFP 18F - FDG to determine the presence and number of malignant cells that do not expire on their surface of PSMA receptors.. The more such cells there are in malignant foci, the lower the expected therapeutic effectiveness of the upcoming treatment with radioisotopes! Also, before starting therapy with the help of scintigraphy and biochemical blood tests (Silk phosphatase, Creatinine, Urea), the excretory function of the kidneys is evaluated, through which residual radiation will be excreted. Also, according to general blood tests (Erythrocytes, Hemoglobin), hematopoiesis in the red, bone marrow is evaluated. A prerequisite for the entire duration of treatment is the retention of T at the castration level - this is so that new PSMA(+) cells do not take the place of the destroyed PSMA(+) cells! I have taken and continue to take Zoladex 3.6 mg once every 45 days (this is my personal experiment in consultation with my doctor!). Baku also asks to cancel all anti-bone resorption drugs (Xgeva, Zoledronic acid) at least two weeks before therapy. The most unpleasant side effect after taking four servings of the Lu + Ac cocktail is a moderate xerostomia, which gradually goes away with time or you are already getting used to it.. The other day I received the results that I have a mutation in the BRCA1 gene.. It turned out that this also somehow affects the results of treatment.. Unfortunately, I found out about it too late, otherwise I would have taken Olaparib during isotope treatment.. It is assumed that this increases the effectiveness of therapy with PSMA.. That's probably all I can tell you about my treatment with the help of the PSMA-617 ligand.. These are not medical recommendations - this is just my personal experience! Tall_Allen has a good link to this account, what exactly can affect the effectiveness of treatment according to the 177Lu - PSMA-617 protocol, you can get acquainted with it: prostatecancer.news/2019/12...

Dynamics of PSA in the treatment of radioisotopes Lu and Ac.
whwalker1 profile image
whwalker1 in reply to RusLand

I thought I had replied but cannot find my post.I had my first Lu-177 infusion on April 5,2022 when my PSA was 221. I had another PSA on May 24 and my PSA increased to 260.

My second infusion is scheduled for June 7. It was originally scheduled for May 24 but supply problems delayed it.

Does the increase in PSA indicate that Lu-177 is not working?

RusLand profile image
RusLand in reply to whwalker1

Hello, whwalker1! It is not possible to immediately answer your question due to the fact that you did not specify the stage and prevalence of the malignant process ..?! What dose of 177Lu activity have you been injected with? Have you passed these PSA tests in the same laboratory and what is your current T ? As a rule, with all things being equal, after the first injection of 177Lu - PSMA-617, if this treatment was approved after the PSMA status was determined, a month after the introduction of the therapeutic isotope, PSA decreases by 50 percent or more.. It is important that this applies to those patients whose status on 18F-FDG before this radioligand therapy was negative or slightly positive! It is necessary to understand that the less FDG accumulates in foci, the higher the therapeutic effectiveness of this therapy and vice versa!

julyturqsee profile image
julyturqsee

most grateful to all who replied to my query about LU-177. Weakened from various modes of treatment and the aggressiveness of his cancer, he'll have to make a decision whether to go forward with this new treatment (possible gain of 6 months) or not ... because of wanting a better quality of life (even for a short time). Always a tough call. Wishing all well in these difficult times.

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

There more to review if you do a search on H U using the search option from your home page. (search for LU-177)...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/27/2022 10:26 PM DST

julyturqsee profile image
julyturqsee

thank you. this is quite detailed. Something in the order of $20,000 is beyond our means. Hopefully Medicare will commence coverage in the next month or so. This might give my partner 6-12 months of living. Are there any preventative measures he can take before or during infusion to prevent dry mouth, nausea/loss of appetite? Also I'm concerned with lowering red blood cells (his hemoglobin is hovering around 9).

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