And on it goes…Car T trial in process at Dana Farber. Anyone else doing Car T? Advice, comments welcome

[Faith1111]

Quick update: brother DX 2018, G9 with Mets, Lupron, Docetaxel, Provenge, Zytiga,Xtandi, ARV 110 trial, Keytruda (msh2 +6, HTB). Keytruda lasted eight months with no side effects. Bone scan in November stable with ALP at 109. PSA rose to 45 and lymph nodes were all growing. I question whether lymph nodes were due to Keytruda or cancer growth. Regardless, MO took him off Keytruda

As you can see, he has run the gamut with TX. He will be the third person at Dana to participate in this phase 1 trial. It is scary and we know what he is faced with going into it. We have researched for hours and he has spoken to the research team. He is very brave and goes into it with a great attitude. He will never be one to say I wish I tried this or that as he has given it his all.

I wish we knew of somebody else who has done this trial. It’s hard going into some thing when you have no data. I do know there was a trial with nine men of which one passed and one went into remission. We’re shooting for the latter!!

Thank you all so much for your prayers and support. We will definitely update as we go along. He will do leukophorisis on Jan 18th with cells re-infused on March 1.

[Lyubov]

Prayers for good outcome.

[Faith1111 in reply to Lyubov]

Thank you

[Hidden]

….and please thank your brother for doing this.

[Faith1111 in reply to Hidden]

I will thank you

[Yadifan]

Wishing him so much luck. I am following your journey closely. He is brave for sure. And has a wonderful supportive sister. I appreciate your updates.

[Faith1111]

Thanks Nal.

[Spyder54]

Yes, he has run the gamut. Your Brother is one tough dude. I did watch a video from City of Hope in Los Angeles where they said they were having good success w Car-T. It may be of interest for you to learn where they are making progress? If you inquire, and share what your Brother is expecting, they may offer their thoughts or experiences.

I know it may seem a bit strange, however Medical Science is often shared, unlike the Corporate World where competition is everything. Just a penny in your hat.

Would you please share your Brothers experience?

Best of luck,

Mike

[Ramp7]

With your previous post, I once again reached out to Dana Farber for a trial study. I mentioned the Cart T trial. They got back to me suggesting the LuPSMA617 trial. In fact after all tests are now completed, I am officially in. The Cart T trial I find very interesting and shall follow with great interest. Prayers shall be forwarded.

[Faith1111 in reply to Ramp7]

So happy you are getting into that trial. Please keep us in the loop. Yes prayers for us all

[Javelin18]

I admire your brother’s will to keep in the fight. I’m trying to maintain the same attitude, but it can be difficult at times.

I’m not receiving CAR-T but have been digging into it, since that, or BITE, will probably be my next step if I have relapse after my current Lu177 treatment.

Both CAR-T and BITE bypass the normal adaptive immune response by making T killer cells attack the cancer directly. CAR-T genetically modifies the T cells so they recognize an antigen on the cancer surface. BITE uses a chemical that binds to antigen on one end and a T cell on the other end.

CAR-T cells are trained to bind to either Prostate Specific Membrane Antigen (PSMA), or Prostate Stem Cell Antigen (PSCA). Looking at clinicaltris.gov, it looks like the Dana Farber trial targets PSMA.

From my reading, PSCA is more widely expressed than PSMA. Only a portion of cancer cells express PSMA. Lu177-PSMA irradiates nearby cells, so it also kills cancer cells that don’t express PSMA. CAR”T only kills the cells that it attaches to, so I’m wondering if it leaves other cancer behind. There may be a broader effect from cytokine release that kills nearby cells.

I would ask the doctor if the CAR-T used in the trial is expected to kill all the cancer, or only the PSMA expressing cancer.

[tallguy2 in reply to Javelin18]

I am on BiTE. I will keep the forum posted when the first scan results come in at the end of January.

[Javelin18 in reply to tallguy2]

How did your first treatment go? Did you have much of a CRS reaction?

[tallguy2 in reply to Javelin18]

Yes severe CRS side effects on rounds 1 and 2, less severe this week for infusion #3.

[Faith1111 in reply to tallguy2]

Thank goodness they were less severe going forward. Hang in there and keep your spirits up!

[tallguy2 in reply to Faith1111]

Thank you. When February comes around the infusions will be done on an outpatient basis, indicating to me that the side effects diminish with time. I will be receiving the drugs at least through next fall.All the best to you.

[Faith1111 in reply to Javelin18]

Yes PSCA is a promising target for car t. The trial at Dana will be targeting only PSMA. I was under the impression that the engineered T cells would only target PSMA cells but that would be a good question for the MO. In researching it seems there are a few other antigens being looked at as targets. The problem is if they are also found in healthy tissue, you’re at risk of those cells also being attacked. Time is of the essence right now and fortunately Dana Farber is a 2 Hour drive for us. He is fortunate to get in the trial (hopefully) as it is a small trial. My concern is that it was a long wait time between removing the cells, re-engineering them and returning them. It is my understanding that there is one other man going through the same trial at Dana right now.

[CAMPSOUPS in reply to Faith1111]

Well thank you Faith. And so much thanks to your brother. I do hope so much this is successful.

You and your brother have practically become the trial and upcoming treatment experts and so again my/our I'm sure thanks for the time researching and the participation in the trials along with keeping us informed.

Your response to Javelin is a prime example of your investment in knowledge and dedication as you have mentally retained so much of what you have learned.

[Faith1111 in reply to CAMPSOUPS]

Thank you. I had no idea when we started this journey I would know so much about prostate cancer! I have studied the heck out of each treatment he has gone through. My head is a swirling collection of numbers and letters and words to hard to pronounce!

[Javelin18 in reply to Faith1111]

I know what you mean about hard to pronounce words. PSCA is an glycosylphosphatidylinositol. Took me a few tries to pronounce that. Finally had to look at the acronym to see how to parse it.

[Javelin18 in reply to Faith1111]

I think this sounds like great plan. I have an aggressive form of cancer, so I understand wanting to get treatment quickly. It sounds like you have a very good understanding of the underlying science. I hope the treatment works well.

[Lavender22]

As others have said, thank your brother from all of us. I too will be watching his experience.

[Lowbed]

Faith,Thanks for the update, I was interested to hear what trial your brother decided on, thank him for us. I hope he gets the best results! Will have him in our thoughts and prayers. Maureen and Lowbed

[Faith1111 in reply to Lowbed]

I appreciate your comment. Thank you

[Bunkerboy]

Prayers going out to you and your brother for good news ahead🙏🏻

[Faith1111 in reply to Bunkerboy]

Thank you so much

[tallguy2]

Prayers flowing. He is in a good phase 1 trial.

[j-o-h-n]

Give your brother a pat on the back..... He sound like a great guy...... Tell us his name.... We know your name and your nickname......which is "Sweetheart".... Prayers for him.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/30/2021 6:32 PM EST

[Faith1111]

Thank you j-o-h-n. His name is Bob or Bobby as we called him when he was a kid. He is my youngest brother. I am the oldest of 5. And yes, he is a great guy.

[j-o-h-n in reply to Faith1111]

Hello Bobby.....keep fighting the good fight.....and since your sister Faith is so sweet don't cheat on her when your playing monopoly.

Faith in the Philippines and since your the oldest of the siblings the rest of your siblings would (or should) address you as Ate Faith out of respect. Happy happy New Year to you all.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/31/2021 7:35 PM EST

[NickJoy]

Best of luck and a happy new year xxx

[Faith1111 in reply to NickJoy]

Happy new year to you too!!

[SuppWife]

Wishing you and your brother the very best! I’ll be following and sending prayers. 🙏🏻❤️

[Faith1111 in reply to SuppWife]

Thank you so much. Appreciate your prayers and well wishes!