Apalutamide (Erleada) Only Lasted 6-7 Months! What Next?

[john4803]

After being on Apalutamide, Lupron, & Xgeva, since April of 2022, & PSA drop from 7.3 (extensive bone mets.) & a drop to 0.1 (for 2 mons.), PSA rose to 0.6 over 3 mon. w/o lab work because doing so well. So, don't know exactly when it started to rise but the rate of increase is geometric!

MO wanted PSMA PET scan to see what's going on & possible treatment change. Had on 1/17 & following results, in brief:

The majority of the lesions seen on 4/22 exam (just before I started Apalutamide, Lupron) have resolved or markedly diminished in uptake. However, there are several new foci of uptake. Overall, in conjunction with the PSA curve, this likely reflects interval beneficial treatment response after 4/22 exam and now developingrelapse/treatment insufficiency.

MO hinted already at Chemo next in my visit with the 0.6 results. He would like to go Pluvicto, because better than Chemo & available in St. Louis region (I live just West) at 2 locations but must fail Chemo first per SOC!

Brief history: See bio for more:

DX & RALP 2017 (Stage IV pT3b, pN1) GS 9 , started Lupron 2017, IMRT/IGRT 2018.

Stopped Lupron after 2.5 yrs.

11/21 PSA 0.4, (1 lesion, Oligometastatic). Cyberknifed.

4/22 PSA 7.3. Started Apalutamide, Lupron & Xgeva. And here I am. See MO 2/1/23.

Any thoughts, please, Warriors?

[Seasid]

I am just curious. Why didn't you have ADT parallel to cyberknife?

[Seasid in reply to Seasid]

You also missed the opportunity for early chemotherapy after. I don't know but it is very sad that you already have to think about pluvicto. Do you have a good MO? That would my recommendation. Are you happy with the institution? Can you communicate well with your team? Do you have a team? Can you get a second opinion from a center of excellence?

[john4803 in reply to Seasid]

Only had 1 lesion that showed up at 0.4 & he thought it was Oligometastatic & maybe curable. Hind sight is 20/20. Looking back, I should never have gone off of Lupron, at all. I have not met with him yet & don't know his next step for sure. He did his residency with Washington U., in St. Louis, which is considered the Harvard of the Midwest. He has been involved in trials, also, and is following trials of Pluvicto, at St. Louis U. Hospital. I live just West of St. Louis. Lastly, my wife is a Dietitian (retired) & worked with him & did nutritional counseling for him.

[Seasid in reply to john4803]

Can you ask for second opinion or to change MO? Even better find a good team so do you don't rely on one person.

[john4803 in reply to Seasid]

Yes, I have a team of UR, RO & MO, who have followed me for nearly 6 years.

[john4803 in reply to john4803]

I will wait until I meet with him on 2/1 & see his prognosis & then consider 2nd opinions.

[Seasid in reply to john4803]

Can you already inform yourself about how and where to ask for second opinion? Could you do it from a center of excellence? Or some high profile doctors? Maybe Sartor or Dana Farber etc. I don't know where is the best and closest to you? It is always good to know your options in advance. I am in Australia and I already know where would be a best to ask for second opinion. It is not a crime, actually it is a good practice. I wanted to protect myself with vaccine against herpes zoster and my GP wasn't sure than I just went to another GP in order to protect myself in a timely manner.

[john4803 in reply to Seasid]

Yes, we have at least 2 in the St. Louis area, Barnes-Jewish (BJC) and Washington University. My MO is the Research Director for SSM Health Cancer Care and has served as the Principal Investigator for numerous clinical trials. He has been appointed an adjunct faculty position at Saint Louis University and is a Regional Research Director for the Saint Louis University/SSM Cancer Care Research Alliance which allows patients access to clinical trials from the Southwest Oncology Group (SWOG). SWOG is the largest cancer clinical trials cooperative group in the United States

He is sending his Pluvicto patients to BJC until he gets his own facility, which may be soon.

[Seasid in reply to john4803]

Sounds good.

Still you can get a second opinion for your piece of mind. (Especially if your cancer accelerates,) why did you miss the early chemo? Pluvicto only add 4 months to your life, it is potentially very toxic and under certain condition could kill you if the PSMA negative cancer take over. Be very careful with your decision. I would ask questions about what is best for me. Good luck.

Nothing wrong with that. I hope he has enough time on you as he is doing lots of other jobs.

[john4803 in reply to Seasid]

Early on my PSA only went to 0.4 and showed only lesion, on the T-4, with PET, MRI & CT scans and the hope was it could be Cyberkniffed, which it was successfully. But then after having been off of Lupron for 1.5 yrs. my T went from the 200,s to the 300s and may have caused the relapse. He has had great success with Apalutamide, with 20 other patients with only "fatigue" as the SE and being 74, we decided to try it. Hind sight is 20/20, of course.

Thanks for your concern and advice and I will keep everyone posted on my progress.

[TonyS58]

Proceed with caution... the PSMA PET-CT scan may not show all of your metastases. It will only show those expressing PSMA. I have had multiple mets of my spine that show up clearly on bone scan and MRI but not on PSMA PET-CT.

[Seasid in reply to TonyS58]

I had PSMA PET scan combined with investigative CT with contrast, FDG scan, nuclear medicine bone scan and bone density scan parallel. I didn't have much MRI as they assured me that MRI is not good in detecting bone mets.(I only had bone Mets.) Maybe I was just too paranoid.

[dhccpa in reply to Seasid]

I've heard that about MRIs and bone Mets, but every bone met detected by bone scans and CT scans has also shown up on MRIs. So is that adage even correct?

[Seasid in reply to dhccpa]

Can we dig up some Head to head comparison of all this technics for falls positives and faults negatives?

Bone scans pick up much more than cancer. They also pick up any bone issues like broken bones etc.

I don't really know, but are you saying that MRI could be better?

MRI would take much longer and it would take away useful recourse from other non terminally ill people. Do we want that?

[john4803 in reply to Seasid]

Just after I went on Lupron & Apalutamide I had an MRI & CT, and it showed it was shrinking a lesion on T-4, & I didn't do Cyberknife on it, as a result. It may be time to have my cancer gnomically sequenced? A recent Color Test showed no mutations, of the most likely for PCa, in my genetic history, too.

[rsgdmd]

To your point about failing chemo....that could be doing one infusion and complaining about side effects so they shut that down.

[john4803 in reply to rsgdmd]

No, I think my MO is saying complete failure on Chemo (6 treatments) before insurance will pay for Pluvicto.

[rsgdmd in reply to john4803]

But if you can't tolerate it.... I know of someone who got Pluvicto covered after 2 rounds of chemo due to bad side effects

[john4803 in reply to rsgdmd]

That's good to know! Thanks! My MO really likes it. They are doing a trial at St. Louis U Medical school for PCa sensitive patients which I am trying to qualify for but don't think I am sensitive anymore?

[dhccpa]

My MO seems to roll with any PSA readings that rise, saying let's wait and see what next PSA test shows, what scans show. In four years after hitting first nadir, PSA has jumped 25-50% at least three times, then has fallen back, even hitting new nadir.

You MO seems more aggressive in using new treatments. Hard to say what the answer is.

[john4803 in reply to dhccpa]

My PSA rose 500%, so I think I am past that point. I am still very healthy, even at 75 with great labs. & should be able to handle Chemo, I think. So, am thinking about doing it now rather than later, but will see what MO thinks when I meet with him on 2/1. My MO has 20 patients on Apalutamide, all doing well & 4 trying Pluvicto, which so far are doing well.

[dhccpa in reply to john4803]

I understand. It'll be interesting how your next PSA comes out.

[Hidden]

You have the option of the combined lu177 + av225.

jnm.snmjournals.org/content...

[john4803 in reply to Hidden]

Very interesting, however, not sure if that is covered in the US?

Thanks!

[Hidden in reply to john4803]

There is a trial in the US: clinicaltrials.gov/ct2/show...

If that’s not feasible, the treatment is available in Baku and New Dehli, approx 6500 USD pr treatment, in Europe more than 20000 USD if available at all.

[john4803 in reply to Hidden]

There is trial about to start up at BJC, in St. Louis, for PCa sensitive & I have been interviewed for it but still waiting. Of course, now it is debatable as to whether I am still sensitive? So, My MO is up on the trials. I will discuss all of this on 2/1. Thanks for the link and I will keep it in mind.

My MO has sent 2 patients to Missouri Baptist Hospital, in St. Louis, also. So, there are facilities available and trials going on or about to start up.

[ajok]

John, from what I’ve read from the Pluvicto manufacturer, I’m afraid they demand that you’ve gone the entire route of treatments before getting Pluvicto. They make it sound like it’s the last option - and maybe it is.

At the price they charge for it, I sure hope it works - not as a cure, just to give a little more time.

I start in February, having previously jumped through every possible hoop.

Good luck, sir.

[john4803 in reply to ajok]

Hopefully, chemo will extend things & give me back some sensitivity or get me to a point where new alternatives are available & I won't need it, but only the Lord knows? Would you mind sharing your history a little bit?

[john4803]

This is an intriguing study but is the sample group large enough to risk it? I will see if my MO is aware of it. Thanks!

[Seasid]

What was your last PSA?

[john4803 in reply to Seasid]

It rose from 0.1 to 0.6 in 3 months. I didn't have it tested for 3 months because it was staying at 0.1. My T is hovering in the 30's however. It got down to single digits when I was on Lupron 5 years ago before I stopped taking it for 1.5 years. My MO thinks my T is low enough to starve the PCa but I wonder. He uses <50 T as the guidepost but it seems I have read that you want it below 20. What have you read?

[Seasid in reply to john4803]

You are correct regarding the T but I don't really know. My is in a range from 0.3 to a maximum of 1.35 (only ones) usually 0.7 to 0.9 on Degarelix alone. I am fine I don't have visible Mets now and we hopefully killed the cancer in the prostate. I don't care about T if it stays under 1 (Around 30) in USA. 1.7 equal 50 in your country.

[Seasid in reply to Seasid]

Your psa is low. Save pluvicto for later. Your had to have a triple therapy like from the start like me start Degarelix then docytaxel after 2 months and then darolutamide for example. That what I would do,but maybe that is now too late. You will be hopefully fine. I am not a doctor just lucky that I am still alive. I had psma pet scan, FDG pet etc.

[john4803 in reply to Seasid]

I need info. from the scan because the Radiologist only pointed out 2 of "several" foci. Could be Oligometastatic & could do "wackamolie". Will find out more on 2/1.

How was Chemo? Did you have a port in the chest & how bad were SE's, if you don't mind sharing?

[Seasid in reply to john4803]

I didn't have a port in my chest as I am not a nice person and that would be an opportunity to kill me. They flushed through the in the lines residual docytaxel (10ml) trough my veins. The chemotherapy treatment was very easy for me but the nursing staff made my experience very bad.

Therefore if you can it done by nice and well trained people you will have no problem. Unfortunately I did it through a public hospital system and I suffered much more trough psychological abuse than from docytaxel infusions.

[john4803 in reply to Seasid]

What do you mean that you are not a "nice" person? So the port was in your arm?

So you were dealing with "socialized" medicine per say?

[Seasid in reply to john4803]

I am culturally strange and they see it. My doctor actually said that it is also happening with others not just me

Bottom line is that the chemotherapy treatment was easy for me but the staff made it difficult. I had treatment anxiety and it was not related to the chemo. It was related to the people working there.

If you are fine socially then you should not expect anything difficult from the chemo.

English is not my first language not even my second language, so you can imagine. I believe you will be fine what the chemo is concerned.

It was a nightmare for me but not because of the chemo.

[john4803 in reply to Seasid]

Sorry you hear that! So did you have a port in the arm or one at all?

I guess some healthcare professionals are more empathetic than others?

[Seasid in reply to john4803]

Of course.

Next time I will pay privately.

"Did you have a port in the chest."

I didn't have a port in my chest.

[Seasid in reply to Seasid]

I had it in my hand.

The machine stopped working and nobody came for hours. I developed reaction at the site. Thanks God it was not the Port in my chast.

5 people where working on me.

Finally the manager came and cleaned up the mess and said that he has to do this otherwise I could wait here until midnight.

As I said, i believe even in Africa I could have a better service. It is not a rocket science.

The chemo was easy but the people don't want you as a customer. I had to stop after 6 cycle. I had enough of the place. I know it is difficult to understand.