I have been lurking on the board for the last year and this is my first post. My 5 year advanced prostate cancer history (in bio) is fairly extensive and for the most part kept the cancer at bay. I have always appeared to be a low PSA producer with minimal or no mets. The last 6 months have drastically changed that.
We just cancelled my 4th Lu177 treatment as it appears to not be working and my blood counts have tanked. Recent FDG PET Scan and bone scan results this past week show widespread bone mets much worse than before, no soft tissue involvement. Scheduled for a PSMA Pylarify PET scan on Tuesday which should show little activity if previous 3 Lu177 treatments worked against PSMA cancer cells. Also, want to get an updated blood biopsy to see if anything has changed since the one done last October. It showed some actionable items, but most items were low % of sample.
Having likely exhausted most of SOC options, I have signed up for a CAR-T trial at University of Chicago. On 5/20, my hemoglobin was 7 and I received 1 unit of blood. On 6/14, I was scheduled for aphresis for the CAR-T trial only to find out that my hemoglobin was down to 5.7. Received 2 units of blood and got hemoglobin back up to 8. Counts will be rechecked in 2-3 weeks to see if they can get me going on the trial. They feel that either the Lutetium or the growth of cancer in the bones has hurt my blood production.
I understand that my options are becoming limited and I am likely beyond what help I can get locally in Chicago. I am willing to travel for another opinion, but need some guidance for what direction to go. Considering City of Hope and/or Dana Farber. Even if a trial does not benefit me it would be comforting to feel I may help contribute to research so that men going through this may have better treatment options and outcomes in the future.
I hope CAR-T works for you. You may get a more useful reading if you biopsy a met that showed up on your FDG scan but didn't show up on your PSMA PET scan. The biopsied tissue should be examined for histology, IHC and genomics.
Thanks for your advice! I have been led to believe a good bone biopsy can be more difficult to obtain. I have not had Provenge yet as doctors were not as keen on the treatment.
“ Not keen on it” ??? Their life is not on the line for their biases. Insist upon it and add it to your support. Real World evidence it adds a year or more to OS. Tepid are eligible and it is approved. Part of SOC Adding another dimension.
I also hope that your trial works for you. After the trial I would definitely ask about adding Enzalutamide (Xtandi). I could not see that you had tried this. There is a chance that it may work. Good luck mate.
Thanks for your reply! I just added Xtandi about a month and a half ago during my third Lu177 treatment hoping to possibly get a little synergy as some studies have suggested. Also maybe some cancer cells would be sensitive since it has been over a year off Abiraterone? Wondering if Xtandi contributes to low blood counts?
Really pleased you have added Xtandi. Makes complete sense. With regards to blood counts, my white blood counts seem ok throughout 22 months of Xtandi. My red blood have been low but just within testing range. My apologies that I cannot help you more with this, hopefully your Oncologist can get to the bottom of it.
Good morning to all,been doing the Eligard shots and Xtandi 160 mg a day .PSA went from 11 to .44 on my last blood test. Hoping for the best!I am just starting out ! Going to moffitt in tampa, they have been great. Wish all the best! Howdey.
Hi. I'm not certain of the most optimal sequence. However, HDGuy61 has added Xtandi after his 3rd LU177 treatment. This makes some sense to me if you have already done Zytiga. However, as I have started with Xtandi, I will have to hope that LU177 resensentisvis my PC either back to Xtandi or for a better run on Zytiga following the treatment.
Thanks and I am optimistic too! They are not listed as one of the locations for some reason. This trial uses PSCA instead of PSMA as the marker to identify the cancer cells.
Thanks again! I’ll look back at those posts. I actually recently connected offline with Javelin18 who was very helpful. The trials are similar except this trial uses a drug weekly to enhance t-cell activity while City of Hope infuses more cells if needed at some point after initial infusion.
That sounds like a good choice for you. Hope your marrow function recovers enough to proceed. Would erythropoietin be of help?Another (also risky) wild card might be BAT. Testosterone supports marrow function.
Thanks! I’ll look into erythropoietin. I’ve also been researching BAT and am aware of someone who recently had good results possibly due to his prevalence of the TP53 marker.
Possible rapid acceleration of PC for some. That is why I favor it early, with asymptomatic PC and lowerPSA, especially in HSPC. Even though the early trials were in mCRPC. Earlier, you can stop it if there is acceleration.
My PSA is rising faster and faster. A year ago it was around 0.2 up from a nadir of 0.12. I started Degarelix 4 years ago.
I had sciatica pain from the cancer in my spine at the point of my diagnosis and I was symptomatic up to 7 days after the start of Degarelix treatment. After 7 days on Degarelix my sciatica pain disappeared.
Now I still have neurological symptoms (nerve pain) after I run and destabilize my spine.
I don't have and never had a bone pain.
Probably I shouldn't have BAT at all. As I was very much symptomatic at the beginning, and I am symptomatic even now probably from the bone damage in my spine.
I would like to get a PSMA PET scan soon if they give it to me. And I hope to get Xtandi. That is why I stopped all of my none essential medication. I am still only on Degarelix.
That seems to be an oddly designed study to me: must have a HRD mutation, but no treatment with a PARP inhibitor, that we know is of benefit in that setting. Then inclusion of carboplatin chemo? OK, that will slow the growth of the cancer for some time, but will also mask the benefits from BAT for those who respond well to it, while making it harder to distinguish those who respond to BAT unfavorable ( with large or continuous rise in PSA or progression on scans). Those are the ones who should discontinue BAT early on, and may be harder to identify while also on the chemo.Am I missing something? If St Vincent’s in Sydney is near to you, at least that is a big plus. And they would pay for everything. Do you have a HRD mutation?
Would suggest at least the PSMA scan and correlate it to the spine lesion to be sure it is not at high risk for spinal nerve compression or fracture. That would be something to look into SBRT for first.
The study says “recruiting now”, so why consider it for the future? BAT was tested in advanced disease, but that does not mean it should be reserved as a last desperate treatment. Early is better (for those who respond well). And less risk even for those who do not respond favorably and must stop if PSA takes off. A few cycles of BAT did not result in continued progression after stopping it. (There may have been one exception?)
Doing anything and not doing all have risks. So we make our own best choices and monitor. Change as indicated. Just one person’s opinion. Good luck.
Greetings HDguy61,We noticed you described your history but can you add some more bio info?
Would you please be kind enough to tell us your bio. Age? Location? When Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
ALL INFO IS VOLUNTARY, but it helps us help you and helps us too. When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.
I failed Lu177 (effective in lymph nodes but not bone) and started Jevtana plus Carboplatin while I waited for CAR-T to start. It’s a long wait from 1st appointment to CAR-T infusion so “bridging therapy” is often needed.
I’m sorry you failed Lu177 as well. It appears there is a lot more that needs to be learned. With my red blood counts low they are reluctant to give me chemo now as a bridge. We’ll see what happens with the red blood counts.
My husband had reached the end of SOC after 6 years of treatment for stage 4 with bone mets. He had a genetic analysis on a biopsy and the tumor had a high mutational burden. After receiving 6 months of keytruda treatments his PSA levels were undetectable and have stayed that way for over a year - that’s the good news. The bad news is he is one of the very few in which keytruda causes an autoimmune reaction and he is now a diabetic. Manageable and hopefully the cancer will be held at bay. It may be worth checking to see if you would be a candidate for this type of immunotherapy. We live in the Chicago area
I hope for the best. Initially reading I thought your reply was going to have a comment on end of his life. I am glad it is otherwise and hopefully the diabetes will be manageable.Up until a year and a half ago I was residing in Palatine.
This honeymoon, riding the wave of no progression I have enjoyed since initial chemo and Zytiga won't last forever and it seems the coming treatments don't last long.
I have been purposefully enjoying everyday as best I can knowing I will eventually be in panic mode again before long, looking at progression and wondering if I will respond to treatment.
Thank you! Glad to hear your husband was able to get the PCa under control and sorry it resulted in another condition to manage. My last blood biopsy 9 months ago indicated some defects, however, nothing significant enough to pursue instead of Lutetium. Since the cancer has grown quite a bit since then, it is time for another blood and/or bone biopsy. Best of luck!
If you go to City of Hope insist on seeing Dr. Tanya Dorff. She is an excellent researcher and also does clinic. If anyone can help you pull a rabbit out of a hat, she can. Best of success to you
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Failed RP & SRT; Negative PSMA PET
Keytruda failing, feeling desperate, advice needed quickly 
Car-t vs regeneron vs Lu177
Why the need for an FDG scan in addition to a PSMA scan?
