Prostate Cancer in Bone Marrow causin... - Advanced Prostate...

Advanced Prostate Cancer

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Prostate Cancer in Bone Marrow causing low RBC does Pluvicto help? First dose 10/28/22, PSA DOUBLED, had two transfusions next dose Monday.

Rhalo profile image
34 Replies

Does Pluvicto help clear bone marrow so RBC's can grow and increase hemoglobin levels? So for WBC and platelets are ok.

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Rhalo profile image
Rhalo
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34 Replies
GP24 profile image
GP24

I know a patient where it did help. But if your PSA value doubles during cycles, Pluvicto may not work for you. However, there are patients which need more than two cycles of Pluvicto to be effective.

Rhalo profile image
Rhalo in reply to GP24

thanks for replying quickly.. We were told initially it would take two to three infusions to see improvement. I just haven't been able to connect with anyone that is having this issue, is as aggressive and resistant. Nor am I seeing any African American patients posting in venues I'm in. There was only one in the clinical trial I read for Pluvicto.

Zengal79 profile image
Zengal79 in reply to Rhalo

It’s so unfortunate. African American men are plagued in great numbers by this disease by my understanding but seem to not have the same access overall. I know there are efforts in the prostate cancer community to correct this, but it seems to be an unfortunate reality. Best wishes to you guys. Can I ask where you are being treated?

Rhalo profile image
Rhalo in reply to Zengal79

we live in MS... My husband was an officer in the Army. Got annual physicals that included a PSA. In 2012 his PSA was slightly elevated and repeated a moth later then had a biopsy that confirmed Cancer. He elected to have brachytherapy PSA went .61 then started back up. We went to Oshner in LA and MD Anderson in Houston, TX for second & third opinions. We have been followed by MD Anderson for last six years including a clinical trial we were in for five months that decreased Tumors by 23% . The lowest PSA HES HAD IN THE LAST YEAR WAS 91. The highest was a little over 1100. Last week it was 703. We are getting Pluvicto in Mobile, AL but his local oncologist and MD Anderson are monitoring.

doc1947g profile image
doc1947g in reply to Rhalo

What unit do you use?

0.0500 ng/mL

5.0000 ng/dL

5.0000 ng/100mL

5.0000 ng%

50.0000 ng/L

0.0500 µg/L

As you can see, there are 6 different unites used.

Rhalo profile image
Rhalo in reply to doc1947g

I'll check

shuckymesh62 profile image
shuckymesh62 in reply to Zengal79

My husband was white and upper middle class with the best insurance our money could buy. He got horrible care.

Rhalo profile image
Rhalo in reply to shuckymesh62

sorry to hear that.. I think we are getting good care.. I just have questions and always looking for the best options , being educated on the disease process and being an advocate for him to ensure good care. We are not ready for hospice.

shuckymesh62 profile image
shuckymesh62 in reply to Rhalo

For sure. We were uneducated about it and asked very few questions. We trusted. We should have fought harder. I am left with so many regrets and a lot of anger.

tango65 profile image
tango65

If you have bone marrow infiltration pluvicto could make things worst because it could irradiate normal blood cells around the cancer. In this situation is better to do Ac225 PSMA usually in tandem with Lu 177 PSMA.

There is a clinical trial doing Ac 225 and Lu 177 PSMA

clinicaltrials.gov/ct2/show...

You could request a FDG PET/CT to see if there is cancer without PSMA expression. Cancer without PSMA expression does not respond to Lu 177 PSMA or Ac 225 PSMA and treatment with these drugs could make things worse.

Tall_Allen profile image
Tall_Allen

Pluvicto will likely make it worse. The beta particles emitted travel a long distance and may further impair the bone marrow. You may be better off with one of the 225Ac-PSMA or BiTE clinical trials.

Rhalo profile image
Rhalo in reply to Tall_Allen

Thanks for responding.... I have so many unanswered questions and not sure I can communicate all my questions effectively in writing. But I will try. We had a PSMA with F-18 that was positive. Is that considered Cancer with PSMA expression? What test or indication should we ask/look for to determine if Pluvicto is further damaging the bone marrow? These are definitely questions I will ask on Monday.

Tall_Allen profile image
Tall_Allen in reply to Rhalo

If your bone marrow is significantly expressing PSMA, it is cancer there.

If it has created problems for your blood production already, Pluvicto will likely make it worse. I think I already answered that.

Rhalo profile image
Rhalo in reply to Tall_Allen

Tall_Allen where do we get info on 225Ac-PSMA or BiTE clinical trials?

Tall_Allen profile image
Tall_Allen in reply to Rhalo

Here are the US trials for 225Ac-PSMA:

prostatecancer.news/2020/08...

The PSMA-targeted BiTE trials are listed here:

prostatecancer.news/2019/12...

Rhalo profile image
Rhalo in reply to Tall_Allen

thanks

noahware profile image
noahware

I am glad you started your own thread, but sorry you are getting the responses that I was afraid you might get. I wanted to see the more expert opinions before being too discouraging and trying to relate my belief that my own severe anemia, post-Pluvicto, might be partly caused by the treatment itself.

From what I understand, sometimes bone marrow micro-mets follow the infusions. So it appears that what may have happened to me. Here is a link regarding that: ascopubs.org/doi/full/10.12...

To quote briefly, "[Pluvicto] is efficacious at acceptable toxicity levels in patients with diffuse bone marrow involvement, suggesting that these patients could still benefit [but] sufficient bone marrow reserve is an important inclusion criterion... Bone marrow impairment may be caused by bone marrow replacement with tumor cells [during Pluvicto treatment] or by exposure to prior treatments, such as chemotherapy or radiation."

"The durability of responses for [Pluvicto] is often short-lived, even in patients with initial responses. The mechanisms of how tumors develop resistance are currently not well understood [but] the therapeutic failure of 177Lu-PSMA appears to be linked in many cases to the progression of micrometastatic disease."

Yes, it may take a few infusions for some men to see benefit. But for men who are already anemic and have marrow involvement, it seems worrying that an initial response would be for PSA to rise so significantly.

To me, it follows that if the marrow is already involved, Pluvicto may logically worsen (as T_A and tango65 suggest) a bad anemia situation. Not being any expert, but from my own experience and from what I've read, I personally would be very hesitant to continue infusions without good assurance that success is at least a reasonable possibility, if not a likelihood.

Unfortunately, docs in the US have far less experience with predicting possible outcomes than docs in Germany, Austria, Australia, India, etc. where Lu-177 has been in use for a decade or so. I cannot recommend any specific doc to seek out a second opinion, but I do feel that would be something to pursue. Perhaps you can delay the next treatment until your questions are better answered, whether by your current team or by others?

One of the reasons I am going to try to pursue BAT is in the hopes it will help with anemia. Having blood counts crash and becoming transfusion-dependent does not seem to bode well for future treatment... dropping within a month to the point where I suddenly need TWO units of blood was pretty scary! (But boy, do I feel better after getting topped off.)

Zengal79 profile image
Zengal79 in reply to noahware

Sounds very similar to my guys experience. He was certain that he should have stopped after one treatment. Unfortunately for my guy, platelets started tanking too. He was sure the third treatment did him in. Who knows, and does no good now to look back on it. There were probably other missteps in his treatment as well, in hindsight. Glad you felt that boost from the transfusion! It’s wild to see someone turn pink again before your eyes. Best wishes to you and good luck w BAT. That was Brian’s instinct to try next. It was just too late.

noahware profile image
noahware in reply to Zengal79

Thank you... and sorry for your loss. Yes, my platelets just went down, too, very rapidly in the past month after being in range right through the first five infusions. I hate to say, but I think Pluvicto as the latest "miracle drug" runs a real risk of being over-used (mis-used) in some men who are not best suited to receive it. I was happy to get in the trial and roll the dice, though.

I did see my hands turn pink right before my eyes! I also started dexamethasone last week, which has also given me a boost. I would have done BAT prior to Pluvicto, if I had a willing MO... but I think I just found one, so here's to rolling the dice again. I appreciate your support!

Zengal79 profile image
Zengal79 in reply to noahware

Keep rolling those dice as long as you can!

Brian did get a platelet boost when he started taking liquid papaya leaf extract. Not saying that’s what caused it but it was the only thing he changed. May have been coincidence…. just giving you our experience. Liquid form, kinda pricey… off Amazon.

Thinking of you, sir. Glad you found someone willing to try BAT. Not an easy thing to get someone to try.

spw1 profile image
spw1

My husband recently had FDG and PSMA PET scans. In the UK they did an MRI and a PSMA and told him that he cold try Lu177 treatment. In India, we repeated the PSMA and added FDG scan. The bone marrow infiltration was too extensive for the Indian RO to recommend Lu177; he also saw that there was a lot of discordance in the two scans. So we did not try it. Actinium maybe an option as it does not cause as much damage to the marrow.

SpencerBoy11 profile image
SpencerBoy11

Curious, about prostate cancer being in your husband's bone marrow. Did he have a bone marrow biopsy? I recently had one which confirmed that I have myelodysplastic syndromes with ring sideroblasts (MDS-RS) which are bone marrow cancers in addition my stage IV prostate cancer. Also wondering if he had any radiation treatments. Thank you.

Rhalo profile image
Rhalo in reply to SpencerBoy11

Has biopsy April 8, 2022. Had brachytherapy in 2012.no other radiation.

Fightinghard profile image
Fightinghard

i had 3 rounds of Pluvicto during fall 2022 as part of trial. Red blood counts dropped each session. Lymph node mets improved. After 2nd and 3rd round bone mets expanded. So I was taken out of the trial. No PSA info was shared during the trial only research team sees the psa changes.

Good luck with next steps

Rhalo profile image
Rhalo in reply to Fightinghard

do you mind sharing your numbers prior to Pluvicto and during?

Fightinghard profile image
Fightinghard in reply to Rhalo

Like I said, the trial research team took the psa and blood test every 2 weeks but do not share results with patient.

PSA started trial at about 30. Finished after 3 rounds spaced 6 weeks apart it (18 weeks total) was at 87. I suspect round one helped because I felt much better overall. But round 2 was not a noticable improvement and round 3 was a negative reaction based on how it made me feel.

noahware profile image
noahware in reply to Fightinghard

In my Pluvicto trial (summer/fall 2022) I was given PSA info but blood counts were not given unless specifically asked for (and then given verbally, not in writing). I was informed they were "okay" or "about the same" but in fact they were dropping, pretty slowly but still steadily.

I remained only mildly anemic until a bit after my 5th infusion, when I withdrew due to extreme fatigue. Over the next few months (Nov/Dec), the red counts fell off a cliff.

Through the trial my scans were deemed to show "stable disease" even though they did show some new mets in the skull. My PSA dropped from about 15 to 3 after round 1, but rose with every month thereafter to about 75 when I withdrew.

Fightinghard profile image
Fightinghard in reply to noahware

noah. I understand. Bummer.

I went into the trial with high hopes. But turns out that Pluvicto is not a silver bullit like I hoped. At least not for either of us.

noahware profile image
noahware in reply to Fightinghard

Yeah, I'm afraid many men will have our experience even as many get benefit.

T_A in some of his posts and links has really made it clear some men will get no benefit or even be harmed, but of course you never want to believe you are one of those guys when going into a new therapy.

I really worry that our "system" is not one where there will be a sufficient effort to determine in advance which men are most likely to gain and which are not. I feel like we are already seeing this in real time, and it will take years to address it to the point where US docs using a drug new to them will know to confidently say "this therapy is NOT for you."

Fightinghard profile image
Fightinghard in reply to noahware

so what next step treatment are you doing now?

noahware profile image
noahware in reply to Fightinghard

Hopefully BAT. I have a new MO that is in contact with Johns Hopkins to go over protocols, and discuss my potential risks/benefits.

Rhalo profile image
Rhalo in reply to Fightinghard

I was asking about red blood cells and hemoglobin. I ran a report last night looking at his hemoglobin and RBC from 2012 TO Precent ( including numbers from the clinical trial he was in from August 2021 to February 2022)

His hemoglobin at diagnosis in 2012 was a 12. ( he said he's always been anemic). I'm 2020 it was 9-10 , 2022 8-9.

Rhalo profile image
Rhalo in reply to Rhalo

I understand you don't have your numbers. Thanks

Fightinghard profile image
Fightinghard in reply to Rhalo

sorry did not understand my RBC was in low/normal when I started. Drifted lower to 8 during LU treatment. Now improving slightly back up to 9

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