I’ve posted here before and have been met with such kindness and helpful knowledge. We’re at another difficult point in my dad’s metastatic PCa journey.
Dxed March ‘18, and has gone through the gamut of standard of care (Docetaxal, Jevtana, Ra223, Lynparza, ADT) and now Pluvicto. He had one round about 4 weeks ago. Bloodwork a few days after round 1 showed an increase in PSA, but significant decrease in Alk Phos. We thought that could mean he was responding well. Bloodwork from yesterday shows a significant jump back up on his Alk Phos, and we’re still waiting for PSA results. Also, his pain isn’t improving.
I know they say scans are the best way to tell if Pluvicto is working but it seems the bloodwork is probably saying something. He’ll get round two soon, regardless.
I don’t know what is left to try. I’ve been researching Ac225 but he’s in no shape to travel outside of our immediate area (Chicago.) He’s receiving great care at both University of Chicago and Northwestern but maybe we should contact Mayo or Dana Farber?
I’m losing hope and am throwing this little note out there to see if anyone can share some my way.
With gratitude.
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Nettie8200
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Inflammation from the radioactive destruction of metastases can cause increased pain and PSA in the short term. ALP is both from the bones and the liver, so it isn't a very good gauge. U of C and Northwestern have great oncologists! All of the top MOs know one another and communicate about their trials, so I doubt you will do better. That said, Emmanuel Antonarakis at UMinn does a lot of innovative work with molecular tailoring of therapies, and might be worth a second opinion.
Hi Nettie, I agree with Tall_Allen that it may be premature at this point to judge the Pluvicto. By the third round, you could get a CT and MRI to see if there is any benefit if your Dad feels it's not working. I don't ordinarily suggest "chasing doctors," but if there is no benefit from Pluvicto, I also agree that Dr. Emmanuel Antonarakis of U of M Fairview probably knows more about non-standard of care prostate cancer treatments than anyone. He is also an exceptionally good communicator who could triage your options to determine what would best work and what order to approach these.
You know, your point about ALP and the liver made me remember he’s been out of Norco and using a lot of Tylenol to manage pain lately. I wonder if there’s a connection.
That's the way to think, N. After two rounds of Pluvicto, my liver numbers started to go up. While I naturally was thinking along your line, i.e., it must be the Pluvicto, I nevertheless changed out my pain-management and supplement regimens and my liver numbers improved to normal range.
Significantly, since Tylenol is not an NSAID, it does not have anti-inflammatory properties. A hallmark of cancer treatment is inflammation, so you may consider ditching Tylenol altogether, or at least rotate it with an NSAID. Since (hurray... ) NSAIDs really irritate my stomach (acid indigestion, GERD), I take low-dose aspirin throughout the day - using chewables so that it has a faster uptake.
And, oddly enough, I have found diphenhydramine (Benadryl) to be very beneficial. My doctor cannot explain it, since one would think that if I'm allergic to Pluvicto, it would ultimately manifest as full-blown anaphylaxis. Thankfully, it has not.
Final thought: Don't concentrate on blood numbers except on how they indicate tolerance to Pluvicto. Only a follow-up PSMA scan will determine if the PSMA-avid cancer is being neutralized. Good luck. - Joe M.
thanks for the response, Joe. Unfortunately my sister pointed out I was wrong and he’s been using mostly ibuprofen to manage pain. 😐 So my theory was incorrect. However, he did have a big jump in the last four weeks of his ALT, too, which is another liver marker.
I also wonder if there’s an ALP flare phenomena to consider. Came across a study that mentioned it regarding ADT therapy.
yes, this is the same when taking zytiga asxwell…up to 5x times normal levels. These drugs are powerful and can beat up our livers. Makes you want to have a beer once in a while but you can’t of your lover is twitching!
Wow, just found someone else who has had C3 disintegrate on them (YOU!!) Mine eroded last June 2022 and I had 2 rods and 7 screws inserted C1 to C6 to support it. I am now on methadone ( switched from Hydromorphone) as my neck/ shoulders are constantly sore/ in pain. I also take about 2g Tylenol per day.
Did you have any neck surgery. What pain meds and dose are you on? What pain level X/10 do u experience and where? Your main pain Ned is aspirin? And how much Benadryl?
I see you are also on Lu177. I have infusion 5 out of 6 on March 15th. I also just replied to Nattie as you can see in this thread . Interesting that you say only a follow up PSMA scan will show whether Lu177 working on tumours. I only get bone and CT as follow up trial scans. My plan was to request another PSMA scan after final Lu 177 infusion #6. I also do not want to be kicked out of trial and to stop getting free Lu177 if they found a new tumour in a PSMA scan now!
How are you being scanned on Lu177, how is it going, and what plans do you have after completing Lu177 treatment.
Note at Peter Mac in Australia one patient has had a total of 17 Lu177 infusions without adverse affects to liver and kidneys!
Hi, nobaday! Since I would like to do some neck-specific talking (if you are up for it), I'm sending you a private chat! However, since chat doesn't support pictures, I'm pinning one here so that you understand the current condition - surprisingly, no surgery...yet.
Regarding the Lu177...yes, since it is targeted via PSMA, only by comparing scans of the relative uptake of PSMA can we prove that it is working. I was able to see a drop-off of PSMA uptake in my new tumors. But maybe it isn't important - maybe the treatment should simply be completed if you can tolerate it, but I think there are some ethical issues there.
Since I'm in the apparent minority with Pluvicto side effects, I can say that if they couldn't prove it to me, I would stop Lu177. Also, I should note that my base treatment hospital is able to make their own PSMA-based scanning contrast in house, so follow up scanning isn't an issue.
I'm done with Lu177 on May 26 and figure a month for wash out until I feel...dunno, hopefully less achy. I figure that I'll have a follow-up PSMA after that. Would they give me more infusions if I was still PSMA positive?
If PSA is going up, I'll ask for a non-PSMA scan, and if non-PSMA avid tumors appear or PSA gets too high, it will on to Ra223, platinum-based chemo, or back to a taxane chemo. Likely another DNA test, too, to see about mutation (my original DNA test came back negative for known).
If I'm clear and PSA is stable, I'm looking for trials. I've already been in touch with a provider doing some work on the various BiTE trials, so as soon as Pluvicto is done, I'm going to try to get get on with that. I may as well, since I'm past my statistical end with this cruddy disease anyway.
I simply take two to three regular Benadryl a day - one in the morning and one at night, and maybe one during the day if it's rough (like today, since my Pluvicto was on Friday). Again, it's weird, but it takes the achy edge off and I can walk normally.
Aspirin is as-needed. Since 4 chewable low dose are equal to one regular aspirin, I do that. Chewables are a bit more expensive, but NSAIDs do a number on my already struggling gut.
Here's that picture I promised... hopefully we can chat in...uh...Chat. - Joe M.
Daughter of now hospice patient ,but I have a few suggestions bc of the meds and experience George's aloe or lily of the valley will help the belly as well as dgl licorice root daily and med carafate for gerd. To protect liver milk thistle . Benedryll has antihistamine and anti prostaglandin properties and does take the age off pain by its chemistry . You seem to be very in tune and I'm sending good thoughts even in my hours or grieving bc hospice has entered the scene . Im so glad you found pain control and yes there's a science as to why so see you trusted your body to tell you and it did. Continue to listen may you get more comfort daily xo
Thanks and will do! “Continue to listen” is indeed the key. I won’t say that it isn’t difficult ~ there is so much noise, isn’t there? My best to you and your father as you go through this journey.
I just terminated Pluvicto at 3 cycles, but new symptoms kept popping up. Scans a week after 3rd infusion showed worsening bone mets and PSA went from slow, but steady, climb (about 10% over 6 weeks) to almost double in 5 days. PSA now over 700. We plan on Xtandi next. Have already failed docetaxel, bicalutamide, abiraterone, carbataxel with carboplatin, and now Pluvicto. Am still on Lupron and Zometa through out. I to have been supplementing an opioid regimen with alternating high doses of Tylenol and Advil with some Voltarin cream on hot spots for breakthrough pain, unless that's really severe, then some faster acting morphine sulfate. Nettie8200, there are options out there, if a person has the will to pursue them. There is also a time to focus on quality of life for the time left with palliative care. Good luck to your Dad.
I'm in the same boat as your dad maybe? How old is he? I was diagnosed with Prostate Cancer at the age of 52 back in 2014. It was an aggressive type moving fast with a Gleason score of 9. I have metastatic bone cancer and taking Xgeva shots. I will give you a short journey what I have been through. I started out receiving the Provenge vaccine in 2015, started Bicalutamide followed by palliative radiation therapy spring of 2017. Then I started systemic chemotherapy with Taxotere and prednisone fall of 2017. Six rounds of Taxotere and prednisone which ended in February of 2018. After this I started started Zytiga and prednisone. My disease went into remission with the Zytiga until November of 2021, almost 4 years. Then my PSA started to rise slowly and I was put on Xtandi for a few months until May of 2022, which stopped the rising but didn't last long. After this, I started Jevtana in May of 2022 until just this last month of February. I did 13 rounds. (WHEW) This kept my PSA the same level not moving much up or down. I'm scheduled to start Pluvicto March 20, 2023. Through all of this my PSA has never went above 3 and the lowest happened during remission at .19. I'm trying to find out how people are doing with Pluvicto, but I am a different breed on this journey. I'm in decent shape considering and I still take vacations. My biggest problem is fatigue. I was told there are many clinical trials after Pluvicto if it doesn't work. I just keep going on thinking this is just a bump in the road and on to the next chapter.
my dad is 73, going on 74, Dxed when he was 68. I’m researching trials but honestly it doesn’t look like much is available here in Chicago that has potential. He’s pretty weak and fatigued and can’t travel far.
His main oncologist is Maha Hussain at Northwestern but they didn’t have Pluvicto available so he’s receiving it at University of Chicago under Dr. Russell Szmulewitz’s care.
You have two of the best in Chicagoland. I have consulted with Szmulewitz and Hussain is on my list of MOs to call if mine progresses. Sounds like you have done your homework, your dad is lucky to have you on his team.
What was PSA and ALP before first infusion and now?I think you said your Dad has many Mets How many? My ALP reduced from around 140 to around 50 or so and my PSA to 0.02 from 0.16 but I am a low expressive of PSA. I have/ had mets at C3 and T8 to T-12 so I consider myself low burden. I am told Lu177 is working well but I am only monitored by bone scan and CT, so all I think is I have no new Mets but no idea whether my mets have been destroyed, or merely held in check??!!I
I have 6 infusions on the trial I am in and #5 is March 15th. My reading/ research indicates that several infusions can be required to show how well Lu177 is working so my advice would be to wait and see what the scans and bloodwork show after 2 and 3 infusions.
I also ask what is after Lu177. If I had not got on a trial in Vancouver Canada I would have gone to India and tried a Lu177/ Ac225 combo. You say your dad cannot travel. Why not? Is your dad in too much pain from bone Mets? What pain meds does he take? What is his pain level on a scale of 1 to 10?
He has tried all the ‘ usual’ SOC treatments.
it’s great Lu177 has few side affects. I have dry mouth/ loss of taste and some fatigue.
I'm about to have my 5th Pluvicto treatment. I've responded very well to it. My PSA dropped from 4.3 to 0.22 after 4 treatments. I had two retroperitoneal tumors, each about an inch long. The day after each injection, I'm given a specialized high-speed newer-type SPECT scan the day after treatment. This scan lets me know in a few minutes how well and if the Pluvicto is still needed/working. One tumor is gone and the other will hopefully get polished off this by next dose or two! If not, I'll likely opt for SBRT to finished it off! I'm almost 73, my journey started at age 50. I'm being treated at BAMF Health in Grand Rapids, Michigan, which is just across the lake from Chicago. I live in Southern California and I also hate traveling, due to other medical issues. To my knowledge, BAMF Health has the latest and greatest scanning equipment and has a very good source for Pluvicto. My RO at BAMF is Dr. Mancini. He's very bright, intelligent and a great communicator. You'll find his staff to be very kind, helpful and competent Check their site out at bamfhealth.com
Good luck to you and your dad, cancer doesn't have to be a death sentence anymore!
Terry, so interesting about the SPECT scan! How awesome to know immediately if and how the Pluvicto is working. I will look into BAMF. Grand Rapids isn’t the worst trek from Chicago. I appreciate it.
When my guy failed Pluvicto (we were UofC as well- Szmulewitz) CAR-T trial was next for him. The trial folks at UofC are amazing . I have a digital scan of the program info (80page book) that discusses the requirements if anyone ever wants it sent to them.
It was to be a major commitment for us. I was going to have to stay with him in the hospital for up to a month as a caregiver to keep a watchful on eye on him. This would not be feasible for many people. Blood counts became prohibitive and disqualified him.
He was still well enough to travel. We went to Kwon at Mayo and Tanya Dorff at City of Hope looking for other options. No options left for him. Hail Mary attempt w keytruda was not effective.
He had 6 more months, transfusion dependent. They recommended hospice at that point but he couldn’t get hospice and receive transfusions. That meant going to UofC every 10 days or so for RBC. Eventually he was also getting platelets. Those don’t last real long. Finally got hospice on board 3 days before he died. His children made that decision so I was thankfully able to keep him very comfortable at home.
Find as much joy in the small daily things with him as you can. Honestly, some of the sweetest memories can come in the worst of times. My heart is full of many beautiful moments in the midst of all the misery.
He did a lot of research on BAT therapy. He wanted to try it but his decline just kept accelerating and we we didn’t get to try.
I’m so sorry for what your family is going through. This disease is wretched. Hopefully good response from Pluvicto is in store for him. Best wishes to you in this journey. Keep us posted. Keeping you in prayer.
My heart aches for you, Mandi. When did you lose him? We are at U of C right now getting prepped for his second round of Pluvicto. How many rounds of Pluvicto did you all do before Dr. S pulled him off? We just met with him and it sounds like he’d do scans after the third to determine whether or not to continue.
I’m not sure how much travel or clinical trials or fight my dad has left. If Pluvicto fails, we’ll go back to Dr. Hussain at Northwestern but my fear is she’ll tell us we’ve done everything possible. He hasn’t had Keytruda so maybe we’ll try that too. Was the hospitalization during the CAR-T trials because of low blood counts?
Thank you so much for the well wishes and information.
He passed away in December. Same protocol. Scans after 3rd treatment.
Just assume and hope that your Dad is going to respond well. Many men do! I know how hard it is. He is so lucky to have your support. Hang in there, he’s still fighting.
My guy wasn’t hospitalized. When we went to have his cell collection for CAR-T (outpatient procedure) his labs were drawn before collection was to happen. Instead of being able to start the trial, his hemoglobin was 4ish so he received transfusion.
Started keytruda soon after hoping it would free up enough marrow space for him to make blood again. Didn’t happen. Transfusions become less and less effective over time. Doc S offered Cabometyx to try, only because my guy kept refusing hospice. Hospice was recommended in June after 3rd pluvicto, before keytruda.
Insurance wouldn’t cover Cabometyx and he was getting ready to pay out of pocket for that but his battle was coming to an end quickly at that point.
Try to stay positive. Enjoy every second you can in the insanity of it all, try to find the joy. I have fond memories of transfusion days. I even have fond memories of the day he died. It’s all part of what makes us human. Life is terminal. Get busy livin!
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) NSAIDs really irritate my stomach (acid indigestion, GERD), I take low-dose aspirin throughout the day - using chewables so that it has a faster uptake. 
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