Looking for other treatments

[Joelhirsch]

I'm looking for additional treatments. GS 10, post radical prostatectomy, post doxytaxl. Currently in an immune experiment with NIH, getting close to the fail point. Would rather not chemo again, but will if I have to. anyone know of anything new/experimental ? I'm in central PA, but can easily get to Hopkins, MSK, and any philly facility. DX just shy of three years ago. Any recommendations appreciated.

[Joelhirsch]

my psa has always been on the light end. intitial dx was at 9, then six weeks post surgery in the mid 30s (dr said by looking at my scans he thought it would be in the 100s). I have significant mets, almost all bone, mostly vertebrae, but some ribs and arm and shoulder. in the current experiment it got down to 0.4, but has slowly risen over past few months to 2.4. Sounds low, but scans this week showed an early new thoracic lesion. I don't know what undifferentiated means, I will check w/ oncologist. honestly I feel like I'm already into borrowed time - wouldn't mind borrowing some more.

[dlestercarlson in reply to Joelhirsch]

Could you share what experiment was done to get your PSA down to .04?

[Joelhirsch in reply to dlestercarlson]

not .04, 0.4. the experiment is a new immunotherapy involving genetically modified virus injections (live small pox and avian flu, modified with a prostate cancer marker) along with enzaludamide. also on Lupron outside of the study.

[Kimmilemo in reply to Joelhirsch]

Keep up the good fight. We will pray for you. Do you have a cancer centers of America around?

[Joelhirsch]

I had dna mapping and it noted no mutations. I am Ashkenazim Jew also. I think they were looking mostly for BRCA but I do recall it not having any mutations noted. thanks for the input.

Joel

[gusgold in reply to Joelhirsch]

Joel,

Have you tried and failed both Zytiga and Xtandi

Gus

[Joelhirsch in reply to gusgold]

the experiment I am currently in includes Xtandi (eznaludamide). I'm at 17 months. I have not had Zytiga yet.

Joel

[Kimmilemo]

Wow, you are full of information. My husband isn’t on here yet. But I don’t know where we are headed with his new reoccurrence. He was almost 10 years out from his first aggressive prostrate cancer diagnosis at age 52 in July. He had calypso , radiation three months and two years worth of Lupron shots for his treatments for his first diagnoses.

Started not feeling good this Jan , his back, pelvis and some blood had him get his PSA checked it was 2.8 and it had doubled in just over a year. So they did a bone scan and cat scan. Nothing showed in bone scan but cat scan picked up a mass on his adrenal gland. Then next scan was a specialized pet scan that lit up the prostrate but not the adrenal gland mass . Oncologist said it looks like a prostrate cancer recurrence but I don’t think the adrenal gland issue is part of the prostate cancer. So they sent us back to Saint Louis to deal with the adrenal with a endro, can’t get in for awhile but one of his hormones are very high. We get four MRI’s next week. One of the abdomen, one of the prostate and one of each hip, the hips were ordered by our local doc because of continued complaint of hip pain. His oncologist said he doesn’t feel like the hip pain is associated with his prostate cancer because it’s not in the bones. They did say they saw a small area at the tip of his pancreas but they think it’s the prostate cancer I guess that’s why they are doing the MRI’s he also has on and off pain where the adrenal mass is. We go to Chicago cancer centers of America.

Thank you for listening

[AlanMeyer]

Hello Joel,

As you and others have said, you need advice from a top quality prostate cancer medical oncology specialist. I presume that NIH isn't able to fill that function for you since they are essentially limited to only doing clinical trials, so Johns Hopkins and MSKCC are excellent choices. Here is a link to the full list of NCI designated cancer centers that will enable you to find places by region and state:

cancer.gov/research/nci-rol...

You apparently had a pretty good experience with Xtandi. There are some drugs that, for some people, may re-sensitize you to Xtandi. One is the diabetes drug Metformin. One good thing about Metformin is that it has been on the market for a long time. It's not experimental, is easy to get, and is known to be pretty safe. Other drugs have also been talked about as drugs that can resensitize patients to ADT or to chemotherapy. A specialist who keeps up with the latest research would need to be consulted.

Since all of your metastases are thought to be in the bone, Xofigo (Radium-223 based internal radiation) is a possible treatment that will reduce bone metastases and relieve bone pain, and possibly extend life for those patients for whom bone metastases are life threatening. But whether it will help you and whether it should be used now or saved for later when you may have pain is something that you'd need to find out from a specialist.

A treatment that is experimental in the U.S. but now established in Germany and Australia is Prostate Specific Membrane Antigen (PSMA) antibody linked Lutetium-177. Lu-177 is a radioactive isotope that, when bound to a PSMA antibody molecule can find and kill cells expressing PSMA - which is mostly prostate, including prostate tumor, cells. Like every other treatment for this disease, some people get great benefit from it, some get little, and some get in-between. Lu-177 treatment is totally different from ADT, chemotherapy, and immunotherapy, so the fact that you may have gotten everything you can and become resistant to the others does not mean you will be resistant to Lu-177. I think a PSMA sensitive PET scan might be able to tell you whether Lu-177 is likely to help or not before you try it. Again, a specialist who keeps up with the latest science, like the people at Hopkins and MSKCC, is important in guiding you as to whether this is useful for you or not.

I think you're doing the right thing by researching all of this now, before you get really sick. It's good to try the new treatments while your disease isn't yet totally out of control and all over the place.

I wish you the best of luck.

Alan

[Joelhirsch in reply to AlanMeyer]

so this isn't really sick? lol

[AlanMeyer in reply to Joelhirsch]

Well, I guess there's "sick" and there's "really sick". But at least you're not really, really, can't get out of bed, I'm having a rotten time and hate the world sick I hope not anyway.

[Tall_Allen]

Michael Morris at MSK or Emmanuel Antonarakis at Johns Hopkins would be a good place to start. Are you castration-resistant and metastatic?

[Joelhirsch in reply to Tall_Allen]

I am both. Thanks for the advice.

[Tall_Allen in reply to Joelhirsch]

If you've only had immunotherapy and docetaxel so far, you may qualify for this clinical trial at Rutgers:

clinicaltrials.gov/ct2/show...

[Ssullivan19706]

DNA mapping if not done yet. I had a mutation they found after no luck with chemo, casodex, Zytiga all while on luprin. I am now taking Lynparza, it is actually a breast cancer drug that has shown great promise in prostate cancer, but is not approved for it yet. I take this along with Xtandi and luprin shot every 3 months.

[caretkr in reply to Ssullivan19706]

wish you luck with treatment. can you please share some details regarding DNA mapping? what should i be asking my oncologist to get this done? my father already had chemo 6 rounds, radiation , radical prostatectomy and on eligard and bicalutamide since 2 years now. He had good response with no detection in PSMA pet ct after chemo and radiation. however, there was a recurrence a month back and he went through prostatectomy and enzalutamide was added to his treatment plan. will DNA mapping help him now?

[Joelhirsch in reply to caretkr]

I think the DNA mapping is very expensive - I got it done for free. ask your oncologist some ins pays for it.

joel

[j-o-h-n]

Dr. Michael Morris at MSKCC is my Oncologist who is extremely competent and a very nice guy. I recommend him highly but I don't know if he's taking on new patients.

Good Luck and Good Health.

j-o-h-n Friday 04/20/2018 5:46 PM EDT

[ronnie1943]

Hi my name is Lynn, chemo, Zytiga, Xtandi failed for my husband, he has bone mets, After all this they found cancerous LN's. Operated and remove the one LN, this past Christmas, he is now on a drug, three pills a day it's called cometriq, it's a targated Therapy drug. Fingers crossed!! Sam, my husband is being treated at Lankenau Hospital, Pa. In Wynnewood. Suburbs of Philly, we are only three miles from the hospital, we are thinking of going down to Penn.in Philly for a second opinion.? Hopkins is a wonderful hospital. Hang in there, so many different drugs out there and more in the making everyday. My husband had the mutations for this drug he is on now and also a few others. Didn't qualify for Keytruda. Joel, Sam was Dx at age 65, he is now 74 young, you will have many years ahead of you, never give up!!

Best wishes and prayers for you and all of the friends on our site!! 🙏🏻

Sincerely, Lynn.