Lutetium LU-177 Trial Acceptance at Duke

[noirhole]

I just found out on Tuesday that I have been randomized into receiving LU-177 in the Vision Trial at Duke. My first infusion is on August 8th. I had just failed Zytiga and on the road to Xtandi when I decided that I would try to get into the Vision Trial. I can not say enough about the professionalism at the Duke Cancer Center. I will keep everyone up to date on my progress. My journey has been quite normal up to this point DX 5 years ago this month, Carbozantinib trial at MD Anderson, 6 rounds of Chemo, Casodex, Zytiga, 18 rounds of radiation to prostate and bladder, 12 rounds of radiation to lymph nodes.

[Fairwind]

Hey, congratulations, I know how difficult and time consuming it can be getting into these trials, especially THIS one.. The worst part of these trials is the waiting..

What's your PSA and Gleason score ?

[noirhole in reply to Fairwind]

It has been a treadmill for me. Between work and keeping myself alive I am exhausted. Not to mention a battle with the shingles. ......which has lasted a month and a half.

[Sxrxrnr1 in reply to noirhole]

I recommend the newer Vaccine for Shingles called Shingrix for anyone on Chemo,,,,in fact for anyone over age of 50.

If you have had the older vaccine it effect was has likely worn off with time and never was as good at preventing Shingles as Shingrix .

Shingrix does require two injections over a multi-month period of time.

You do not want to get Shingles ever,,,with a compromised immune system from chemo you are very highly at risk.

It was a battle with my MO for him to finally approve this injection while on chemo. Shingrix is not a live virus vaccine so getting it while on chemo is not risky as was the old vaccine while on chemo.

As I found, a Physician’s approval is not required anyhow. The vaccine has been in short supply,,,however CVS and others can administer when in stock. Copay even on Medicare D can cost 80 to 100 bucks for each shot.

When I finally convinced him of this he acquiesced and I did get my first of two injections.

Plug Shingrix into google for a wealth of detail.

Again you do not want to get this disease

[j-o-h-n in reply to Sxrxrnr1]

Thank you for your informative post. Guys like you make HealthUnlocked a resource of knowledge for all of us.

Good Luck, Good Health and Good Humor.

J-o-h-n Friday 07/26/2019 5:58 PM DST

[noirhole in reply to Fairwind]

8 out of 12 cores were 9s the other 4 were 6s and 8s. My PSA has never been over 16 and never less than 2.3 through all treatments. Scans have always been my best indicator.

[Fairwind in reply to noirhole]

Hang in there Brother..

[Olivia007 in reply to noirhole]

U said ur scans r best indicator may I ask U how? Because my dad prostrate is rising his scans look normal meaning no new Mets they r “inconclusive” so just asking how does it tell u maybe my dads urologist doesn’t understand?

Thank you,

Olivia

[noirhole in reply to Olivia007]

My PSA has always been low so slight changes in my urine stream or pains while pooping have not followed with a jump in PSA but scans showed prostate enlargement or lymph node enlargement. Listen to your body as well as your numbers.

[Olivia007 in reply to noirhole]

Thank you my dads PSA is rising but the scans show nothing he had The axnium I think that’s how it’s spelled forgive me. That is supposed to be a great scan and the urologist told us it was “inconclusive” it didn’t show anything new? I thought that sounded like sort of good news?

[tango65]

Best of luck with the treatment!.

[noirhole in reply to tango65]

Thank you.

[pilot52]

We follow the same route....Duke appears to be a miniature MD Anderson..I have been at MDA since 2012 and Duke the last year . Miss the Rotary House. Good Luck Amigo....A Grounded Sky King

[j-o-h-n]

May you hit the jackpot of health which gets you out of your hole.

Good Luck, Good Health and Good Humor.

J-o-h-n Friday 07/26/2019 6:02 PM DST

[noirhole]

Thanks. Never short on humor or sarcasm.

[zengirl]

How did it go for you? How are you doing? Do you know if they are still accepting new patients for this trial?

[noirhole in reply to zengirl]

Treatment continues, so far I have had 3 infusions which last approximately 2 hours the actual medicine infusion takes 15 minutes but I get saline for an hour before and during for a total of 2 hours when vitals are taken and my radiation level is monitored. After treatment I have to stay 6 or more feet from the family for three days until I am in safe mode. I have not had any noticeable side effects. My PSA has dropped to its lowest level in 5 years and I have seen my tumor burden shrink by 40 to 70 percent. Last scans did not show any significant changes in bone mets. I have my next CT and bone scans, blood, and doctor visit next Wednesday the day before Thanksgiving (can't wait to fight the traffic on the way home). I hope to see continued improvement with no progression. My next infusion is on December 12.

As far as I know the trial is currently closed to new participants.

[nobaday]

Hi Noirhole

How did the Lu177 go.? I am still PSA 0.01 after 26 months on Zytiga. I was/ am always thinking of Germany for Lu177 but with any luck I might make it to Lu177 US/ Canadian approval. I had a bunch of spine Mets/ soft tissue Mets at diagnosis.

I was also interested you replied to a guy about DRE just recently and you also mentioned about getting checked out if had a vasectomy. First time I heard that... I always wondered whether the vasectomy had any affect on getting prostate cancer and this is first time I have read someone mention it.

Also I had asked for prostate removal or prostate bed eradication but with a bunch of Mets it’s not part of Standard of Care here in Canada.

How did you manage to get radiation ( or what rational) to prostate bed and bladder when no data to show increased survival.

[noirhole in reply to nobaday]

I had read something about having a vasectomy increases the chance right after my diagnosis . I am sure that you can find as may studies for as against. I got radiation treatment to my bladder due to the PC invading the bladder wall and my lymph nodes were done as I had one or two radical lymph nodes on my right side that were growing very aggressively and I talked my Radiation oncologist into treating them. As far as the LU-177 I have been happy with the treatment. My PSA which is has always been low got to the lowest since diagnosis which was 1.27 and then hovered, by the last treatment which was on 4/6/2020 my PSA was 1.67. But scans have remained stable or improved even with the PSA rise. I think that may be due to bone mets which have looked unchanged. After about the 4th treatment some Mets had shrunk 40 to 70 percent. What I can not answer is that as part of this study the PMSA scan was done by a 3rd party and not released to the patient or treating doctors. So it is difficult to say what level of response I have had since I never saw how much PMSA expression I had. It must have been enough for the drug manufacturer to sign me up. The study only does survival tracking and does not preform another PMSA scan to measure effectiveness. It would be best in my mind if I new that at the end of the treatment I had NO PMSA expression that would measure the success of the treatment for me. I would say for myself that it was a good experience and that I did benefit (great soft tissue response). I have a follow up in 6 weeks to decide what to do next. For me hopefully travel if the borders are open and then seek subsequent treatment after the summer. In my case I did not catch the hail mary pass but I am not giving up trying. I have heard rumors from the radiation doctors that this treatment has been very successful and may get fast tracked for approval. Good Luck !

[nobaday in reply to noirhole]

Thanks for the info You might not be able to travel to Europe but there is Mexico Guatemala Belize and South plus Canada and Alaska... July and August. Probably not wise to take an Alaskan cruise ship!!

[greatjohn]

your post says you'll keep us "up to date"...but I didn't find any posts after this. How are you doing? How was your experience with LU-177? Hope all went so well...that you've been too busy having fun to write!

gJohn

[noirhole in reply to greatjohn]

Well I finished the trial but showed progression on both PSA and CT scan 3 months after the last treatment. So Duke sent me packing back home to start Chemo. I can say that I believe I had good LU-177 results but since I never saw my PMSA scans it is hard to tell what percentage of cancer cells were PSMA sensitive. I would do it again. Treatment may have killed all PMSA sensitive cancer cells who knows. Doctors determined I also failed Xtandi. So I started chemo and after three rounds of Jevtana it appears that also doesn't seem to be working. Now on Erleada starting last Tuesday and going for a CT scan Monday to choose a needle biopsy location to send off for genetic testing. Trying to always have a plan B. I can always go back to taxotere or an off label treatment if genetic testing turn anything up. In the mean time dodging Covid and keeping positive. Fight on brothers. Welcoming any ideas. Happy 4th of July!

[dlestercarlson]

Hi, I am replying to you post on LU177. He was able to get into the study, but was given standard care, we opted to not continue and stay home for standard care. However I am saddened to tell you my husband passed away in December a few days after Christmas from his cancer. Good luck in your battle with your cancer.

[dlestercarlson in reply to dlestercarlson]

Thanks for understanding

[greatjohn]

So sorry for your loss

[Gunnershome]

Best of luck!! We are rooting for you! Could you kindly share your Gleason and if you ever had mets? We are looking at our next step/option what to do next.

[tallguy2]

Sat wishes for you in this trial!