My father was selected it in the Lu-177 trial

[Daddysdaughter]

Hi for those of you following along I just wanted to keep you updated that my father was PSMA positive and LUCKILY was randomized into the trial arm of the Lu-177. I know this is all by chance and we are hoping that it will work. His first treatment will begin August 22 I will keep all of you updated my prayers are with all of you and caregivers on this site.

[tango65]

Thanks for the update. I wish you the best of luck, and keep us informed.

[Tall_Allen]

My prayers are with him.

[Daddysdaughter in reply to Tall_Allen]

Thank you!

[Hidden]

The darkest hour is just before dawn, things are looking up for you.

[cceds]

Appreciate the update. Please keep us in the loop. Praying!

[Grumpyswife]

Will the treatment be done in Omaha? I know you said the scan was in Texas and I am curious where you and your Dad live for the logistics of the treatment. I know Hope Lodges will often provide housing during cancer treatments and many other such places around the country as well.

[Daddysdaughter in reply to Grumpyswife]

It’s part of a trial so the travel/hotel is included. Till they open up something closer.

[Daddysdaughter in reply to Grumpyswife]

We live in California and we are blessed to have him on this trial that includes expenses. They are planning to open 30 more centers in the next few years. There is talk about opening in California in 8-10 weeks. Yes it would be better, less traveling but we have loved visiting Omaha (in the summer) 😁

[Grumpyswife in reply to Daddysdaughter]

Yes I was there for baseball World Series and enjoyed that plus the indoor rain forest.

[j-o-h-n]

God Speed...

Good Luck and Good Health.

j-o-h-n Sunday 08/05/2018 1:24 AM EDT

[ctarleton]

Thanks for the update and for participating in the Clinical Trial. I hope your Dad gets a wonderful response, with minimal side effects.

[MelaniePaul]

That's brilliant news! Good luck to your dad! Hopefully it will work!

Mel.

[Daddysdaughter in reply to MelaniePaul]

Thanks Mel!

[Brbnbrn]

Our thoughts and prayers are with you both. Yes, please keep us posted. 💖

[larry_dammit]

Good luck to your dad. Will keep him in our prayers . Fight the good Fight

[Daddysdaughter in reply to larry_dammit]

Thank you!

[Tjc1]

The best of luck with it, we will waiting for the good news.

[CaregiverWife]

That’s wonderful! Prayers for a great response for your Dad and strength for both of you. ❤️

[Beermaker]

Good luck with the treatment. Keep us posted please.

[TenscTexan]

I am part of the clinical trial in Phoenix. I am receiving the experimental version LU177-PMSA-R2. My first was July 11, and the second will be August 28.

So far, outside of fatigue, I haven't experienced any side effects. I can't say for sure the fatigue is from the trial drug,

Good luck to your Dad, I'm sure he will do fine.

[Daddysdaughter in reply to TenscTexan]

Thank you so much for sharing. I wish you all the luck in the trial. Any words of caution or recommendation? Ice packs to prevent salivary gland issues? Are you also taking medications such as Zytiga / prednisone? I hope you have pure success!

Minimal to no side effects is amazing to know and that is one of the reasons why I was very excited that my father got on this trial. Most of the trials we looked into cause some serious side effects and required prolonged and repetitive hospital stays and infusions.

Much luck please let us know how you are doing!

Monique

[TenscTexan in reply to Daddysdaughter]

Yes, I am still taking Zytiga and prednisone. I wish I could stop taking those but I was required to continue to take those as part of the trial. It is way to early to have any results, possibly some information at the next treatment later this month.

Good luck.

[Daddysdaughter]

First treatment rescheduled due to manufacturing.. September 7th. Meanwhile my father just started to experience extreme fatigue with Zytiga and prednisone...

[Grumpyswife]

Well the traveling and being outside his routine can be tiresome. Is he allowed to adjust his Zytiga/Prednisone dose before the treatment?

[Daddysdaughter in reply to Grumpyswife]

I have not asked, we just began to titrate his prednisone because of stomach issues.

[Foster007]

Hey Daddysdaughter,

I just saw you reached out to me 6 months ago and I never saw it. It is by chance that I was going through old emails and saw this notification. Happy to talk if you want as I have gone through it in Germany. Make sure he drinks lots and lots of liquids, ice his parotid glands and keep him chewing gum, gum drops or anything to keep his salivary glands producing so he is keeping the radiation moving in those sights. Just dumb luck I saw this and I do hope you see my response.

Best

Foster

[Daddysdaughter in reply to Foster007]

Hi Foster! Thank you so much! My father was lucky enough to get on the treatment arm of the lu-177 PSMA 617. We are praying for positive results. How was your experience if you don’t mind sharing.

I will take your recommendations and get him ice packs and lots of gum! I was also thinking about getting him some sour candy, that always makes more saliva!!

How are you doing now? Did your PSA drop? Any notable side effects. How Many treatments?

Thank you again so much for replying!

[Foster007]

My PSA was undetectable for about a year and then it came back, so I did my fourth round of treatment a year after I had done the previous three rounds. (Usually you do all four spaced out 8 or so weeks apart). At the same time I am doing my 4 treatment round I seem to have also developed a bit of mutated cancer that is giving us worries. So we spot treated that with Proton Beam therapy and that failed so now I am about to try a melanoma drug they think will work on me (if I can get access tothe drugs). Because I have a mutation that they think this drug may work for, if it does work, it could be a very good thing for my long term survival. This is a crazy club you joined with your father... I had very minimal side effects from the PRRT. Minimal to no dry mouth and tiredness. Aside from that, really nothing. The hospital should have plenty of ice so you just have to make sure he keeps it under his chin and riding up his jaws up to his sideburns. The best way to do this is to get two of those long rubber gloves and fill them with ice and tie them together to create a collar. And keep him drinking water.

They probably will not allow you in the room as he should be pretty radioactive so make him aware of what he is going to have to ask nurses to help him with. It is an additional duty for the the nurses so they can be resistent, so prepare him that he may have to be insistent.

[Daddysdaughter in reply to Foster007]

Wow that’s amazing! I really pray for you that the melanoma drug works for that stubborn mutation. This has been a crazy ride, since we had thought my father had neuroendocrine NEPC. That was only in the lymph nodes, after failing Xtandi, chemo, we had his biopsy tested and there was minimal options available. Mostly immunotherapy treatments with 10-20% chance of helping. Other options were TRC 105 an angiogenesis trial. Then Zytiga worked for about 15 days - once if failed and now numerous bone Mets- i remembered the lu-177 in Germany. I was ready to take him until Heidelberg university recommended that we opt for the trial here in the USA. We were one of the lucky to be randomized into the treatment group. I really pray my father the success! I know some men received treatment and it didn’t help much.. i really thank you for taking the time to give me all the details. I will be there with him. With lots of ice packs and specific instructions!! Wishing you the strength to fight this away forever. Thank you

Many hugs and prayers.

Monique