can anyone describe their LU177 personal treatment & outcome?

[Willofthewisp]

LU177 therapy outcome in US or Germany

[Grumpyswife]

Just to help out…my husband had one treatment of Pluvicto on 6/21. He is due for the next one on 8/2 if his bloodwork is adequate. His PSA dropped at least 100 points from 350 to 250 or 300 to 200 depending on the lab. No side effects yet.

Do a search on here and then “follow” the people whose treatments you’re interested in. There’s lots of information available.

When you search it’s Lutetium or Pluvicto for spelling or you might not get many results.

[NotAlwaysSunshine]

curetoday.com/view/vision-t...

[tango65]

I had Lu 177 PSMA treatment in Germany in 2016. I did not have any complication except for transitory fatigue (a couple of days) and some edema which resolved overnight.

Here you will get anecdotical information.

This a link to the VISION trial a RCT about treatment with Lu 177 PSMA in very advanced mCRPC:

nejm.org/doi/full/10.1056/n...

This link has information about Lu 177 PSMA treatment published articles :

pubmed.ncbi.nlm.nih.gov/?te...

[Jasmann]

I had my treatment in Germany. All of my mets were cleared and my PSA has dropped to 2.2(I still have my prostate) and has been steady for 2 years. No side effects except for 2-3 days of fatigue which I attribute to the stress and poor sleep in the hospital. The best decision I could have made. Hope it works out for you too.

[countrymusic101 in reply to Jasmann]

Jasmann, how many treatments did you receive and how many weeks apart? I’m going next week for my first of three Lu-177 infusions.

[Axaltaman in reply to Jasmann]

I’m trying to decide to forgo surgery and go right to lu177 in Germany. I also want to avoid hormones.

You kept your prostate. Did you have any other treatments before lu 177.

[Jasmann in reply to Axaltaman]

I did high dose Vitamin C for about six months. I was cautioned not to do the LU177 too early. Things stayed steady for couple of years and then the PSA began to rise. If by treatments you mean chemo or radiation, no. I was advised against it. Everything was less invasive. I currently take Pectasol C, Ivermectin (12 mg/day), and sea cucumber. Lots of studies on these three being very effective against prostate cancer. I don't know where you are in the disease, but don't go crazy worrying. There's a lot happening out there now. You just need to be glued to the internet couple hours a day and dig these things up. I'm almost 9 years since diagnosis and my PSA hovers in the 2.2-2.4 range. I'm due for a Ga68 PSMA scan soon and will see if anything is brewing. Let me know if you need anything else. Happy to help.

[Daddyishealing in reply to Jasmann]

Hello kind soul ,are you saying lu177 is not that harsh as my dad is very very frail after a stage 1 trial and he can't really stay awake . It is hard for me to use my hands bc of my own conditions so would you be ever so kind as to link me to studies on ivermectin,pectasol c ,and you said sea cucumber . Do you have brands on anything . I can't convince my dad of anything so studies and I'm lost bc of my own disability

[Jasmann in reply to Daddyishealing]

pubmed.ncbi.nlm.nih.gov/204...

naturalsolutions.nz/protoco...

pubmed.ncbi.nlm.nih.gov/358...

I didn't get much of a response from the Ivermectin and stopped taking it. As with all of us, every case is so different and what works for one may not work for another. But there have been lot of studies done on the Pectasol-C.

Hope this help and all the best.

[Daddyishealing in reply to Jasmann]

Tysm

[Willofthewisp]

Could you recommend a German hospital & MD for treatment?

[Willofthewisp in reply to Willofthewisp]

Since thanks for your reply. Keep up the great life!

[Ramp7]

I can offer my experience to date. The trial study at Dana Farber is where I was accepted. The first infusion was January 2022 and I shall be receiving my last one in August for a total of 6. Prior to the trial I was told my PSMA was over 95%. PSA went from 8.1 to 0.21 after 3rd infusion. Still am on Lupron, Zytiga was dropped before trial started. Fatigue is the only noticeable effect. For me, my energy returns to near normal after 10 days.

[TWTJr]

I have had one treatment so far. 4 weeks out. Some tiredness, mild dry eyes and xerostomia. PSA dropped from 10 to 2.67. On Lupron, zytiga and daralutamide. So far, so good.

[Daddyishealing in reply to TWTJr]

What is xerostomia

[dockam in reply to Daddyishealing]

Dry mouth from the Lu-177. You have to sip water and keep teeth extra clean as the saliva helps break down starch with amylase and buffers acid. You may have an increased risk decay, so flouride rinses will help also .

Some may find that this helps: biotene.com/dry-mouth-produ...

[MateoBeach]

Pluvicto approval in the USA has very limited criteria that correspond to the VISION trial. Metastatic castrate resistant and failed a taxane and one AAR drug. If you are less advanced then Germany (or several other countries notably Australia) have much more experience and range of indications for treatment, including mHSPC. The whole clinical situation should be evaluated in deciding upon treatment. I think you can trust the experienced centers for radioligand treatments in Germany, Australia, and probably India and Finland, if you do not qualify for Pluvicto.

[Willofthewisp in reply to MateoBeach]

Sincere thanks for your reply! Wishing the best for you!

[countrymusic101 in reply to MateoBeach]

I am traveling to India next week for first treatment of Lu-177. I am mHSPC with several confirmed PSMA uptake lymph nodes in pelvic region. I researched quite a bit and there are several experienced centers in all the countries you mentioned. 👍🏼Do your diligence and pick an experienced doctor you feel comfortable with.

[MateoBeach in reply to countrymusic101]

You are correct. I already receive Lu treatments at GenesisCare AU in Australia. Am also HSPC. Are you seeing Dr. Ishita Sen at Fortis Memorial in Dehli? She is very knowledgeable. A good choice.

[countrymusic101 in reply to MateoBeach]

Yes I am going to see Dr. Sen. She has been very helpful and available around the clock via WhatsApp to answer all my questions in regards to the treatment and travel. She has a concierge team to help with all the details.

I had a consultation with Dr. Hartenbach in Vienna as well and he was great as well with a lot of experience treating men with mHSPC.

[Vegasborn in reply to countrymusic101]

How did you find Dr. Sen?

[countrymusic101 in reply to Vegasborn]

I found Dr. Sen from this group. I spoke to a couple group members that went to her and asked about there experience. Emailed Dr. Sen and she responded immediately. Set up some consults online video calls and planned my treatments.

[Hidden]

No personal experience. Did a little research.Clinical trial(s):

splashtrial.com/?utm_term=l...

General information on this treatment:

uchicagomedicine.org/cancer...

[Grumpyswife]

Good news update one month after Grumpy’s second Pluvicto treatment in Athens, Georgia. He had no side effects from second treatment. His ability/desire to walk has improved to the point where we traveled to see my elderly father. Grumpy is bicycling 30 minutes daily again.

He has no pain and enjoys simple pleasures like seeing friends and watching his beloved Minnesota Twins on tv.

The Athens clinic asked us to get bloodwork here in Minnesota. That looks acceptable to me and his PSA has dropped to the 50s from over 350 before Pluvicto.

We have a long drive back to Georgia but look forward to his next treatment on September 13.