I need some help and guidance as to what we can try next after 3rd Lu177 increased bone mets but decreased soft tissue mets in lymph nodes, urinary bladder, prostate. Husband’s PSA is 2.29 prior to first Lu177 infusion but went up to 2.49 after 3rd infusion. We were happy after 1st infusion back in July since the urinary pain was no longer existent until now. However, the latest F18 PSMA pet scan showed increased number and psma avidity of skeletal mets 😢
We have tried Zytiga, Docetaxel, back to Zytiga and latest is Lu177. Along with Xgeva and Eligard/Lupron all throughout since diagnosis in 2018.
No genetic mutations when blood was tested 2yrs ago. PD-L1 negative. Fyi, actinium is not available here in the Philippines and i believe Xofigo as well when I asked our MO.
MO wants us to submit a tissue sample from biopsy procedure taken back in 2018 to Foundation medicine in the US to have genomic profiling done and that will take 2-3wks. I just dont know if we will get something relevant from it because the tissue sample is from biopsy procedure done in 2018. The mets now arent big enough to get a sample.
Appreciate for any suggestions. TIA.
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dvcarola2
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Is Jevtana available? Did you have a germline genomic test? that is cheap and easy. And if you are BRCA+, you may respond to a PARP inhibitor. Some tumor genomics, like MSI-H/ dMMR remain consistently true based old tumors.
If there's any suspicion of neuroendocrine, I'd recommend both. I just had 3 cycles of cabazitaxel alone and it did nothing for my NEPCa tumors except allow them to grow and multiply. About a year ago I had a great response to carboplatin + etoposide, but the results didn't last.
I'm currently on folfiri which seems to be working, but it's too soon for a new scan to confirm. I just feel a lot better. The takeaway is that there's a lot more off-label options for NEPCa than I ever imagined. Don't give up hope!
Thanks Tom for sharing your story. I will take note of your experience with neuro endocrine ca in case we do come to that. You’re truly an inspiration along with the other warriors here. Ive read your posts on NEPca and you never gave up! Thank you for giving us hope! May you continue to do well with folfiri and live many many more years 🙏
You can use biopsy samples at least up to five years old. I think Foundation accepts even older biopsy samples. About 50% of the mutations are found from biopsy samples while the other 50% are found using a blood test (i.e. somatic versus germline mutations).
I recommended to apply a Lu 177 / Ac 225 combination instead of Lu 177 only eight months ago. Ac 225 is more effective against bone mets. Is Ac 225 available in your country now?
I would add carboplatin only when there is neuroendocrine tumor. Your doctor wants to apply a very aggressive treatment but this may cause more side effects than provide benefit.
Yes I remember your advise on adding Act225 to Lu177 many months ago but unfortunately it is not yet available here. Our doctor who administers this treatment (not our MO) can only order Lu177 from Germany and said that Act225 will be offered at some later point in time but she doesnt know when.
About looking at somatic mutations, yes we will proceed with Foundation One CDX. We will start processing papers today. The pathologist told me results can come out after 2-4wks. I regret not having this done sooner as I was hoping a miracle will happen with the Lu177 treatment sigh.
Im getting scared seeing how aggressive my husband’s cancer is and how limited our options here. At 46yo (44yo at diagnosis) he is just way too young for this but we are not yet giving up! Still hoping and praying for a miracle soon.
If the cancer is progressing and the PSA is remaining the same, IMHO, it could be useful to get a biopsy of the actual metastases and do genomic and immunohistochemical analysis. These studies could identify mutations which could respond to specific drugs (keytruda, olaparib, rucparib etc), and also determine if the cancer is evolving to neuro endocrine cancer which could respond to treatment with chemo plus platinum drugs.
Yes im also fearing that neuroendocrine is coming into play. What markers should we test for neuroendocrine? I will also ask our MO later abt it so hopefully we can test it from here and no need to send sample to US.
Thanks Tango65, weve just seen our onco today and he referred us to an ortho surgeon who can do bone biopsy on the spine T7-L5. After ortho surgeon consult, there might be some possible luck getting some sample from there but we need to do MRI first before the bone biopsy. The sample will be sent to Foundation one in the US for genomic profiling to check for somatic mutations. Keeping our fingers crossed 🤞
I had genetic testing done on biopsy samples taken in 2014 and they were still able to detect mutations. I also had a germline test a couple years ago which uses a simple blood or spit sample which showed the same mutations. A company called Invitae did the germline test and a company called Caris did the biopsy or somatic genetic test. Both were done through my PCa specialist.
Thanks Ed, we did also germline test in 2019 and the blood sample was sent to Invitae in the US. And out of the 60 genes tested, only one came out which is the MUTYH gene which is c.934-2A>G (splice acceptor).
We havent done yet the test for somatic mutations. Just dont know if latest bone biopsy sample is a better sample than the prostate biopsy sample from 2018 when husband was diagnosed.
I had 4 x Lu177 doses Nov 2108 to may 2019, and Psa went from 25 before to 0.32 in Nov 2019. But I also had Xtandi added from April 2019, thought to boost effect of Lu177.But from Nov 2019 and July 2020, Psa went from 0.32 to 30, so I had more PsMa scans and I had more Lu177 in late July and early October 2020, and Psa fell to 7, but is now 30.
The follow-up PsMa scan in Nov 2020 showed some new bone mets with low SUV only 1.6, some bone mets totally zapped, and some still active, with SUV 10. Theranostics Australia refused to give me more Lu177, and I assume it was because they see a rise in PcA which won't respond to more Lu177, and more could be too much and give bad side effects.
I also had FDG PET scan in July with PsMa scan and FDG scan was negative, which meant all my mets should respond to Lu177. I had another 10th PsMa scan a week ago with fast rising Psa and probably I have a big new pile of bone mets which may not respond to Lu177.
But I may have Ra223, because that does not depend on PsMa expression, and depends instead on Ca traffic at bone mets.
All scans since a follow-up in 2019 show all soft tissue mets all gone. But its always possible the scans just could not see small mets, or that bone mets have spread back to soft tissue and I may have many mets now everywhere, so Ra223 won't kill these so there's only one thing left, Cabazitaxel, maybe combined with carboplatin, which will give horrid side effects.
Docetaxel failed badly in mid 2018, which was why I went to Lu177.
I don't have much faith in any chemo.
I had DNA analysis in late 2020 and they searched for 15 different things but did not find one that could lead to better treatments, and I am nor Brca1+2 positive, so no PARP for me.
Meanwhile, I am continuing to cycle 200km+ each week and I feel good doing it and after.
Mets are not large. But I find out soon what might be done.
My Pca probably began 2004, but Psa was 3, so no action was taken. But in 2009, Psa went to 5, and biopsy showed Gleason 9 and 9/9 positive samples. An RP was attempted in early 2010, but Pca wrapped around PG so I was among the 1% of Pca patients who docs claimed could not be given an RP, so I had ADT + EBRT over 2 years, which failed miserably, so I've been on ADT ever since, and that alone has zero effect now and Xtandi also must have no effect, yet docs are keeping me on both, probably because they just don't know any better.
ADT alone lasted 5 years, and added Cosadex then Zytiga suppressed Psa for 14 months while I watched the number of mets and their size increase with PsMa scans.
But last week's PSMa scan should show a much worsening scenario for me.
I'll do a nice bike ride tomorrow, but don't ask me if I'll be doing any cycling in 12 months.
Thanks so much Patrick for sharing and im so happy you had a wonderful response with Lu177. We didnt add Xtandi because we cant afford doing both.
The highest SUV in my husband’s manubrium is at 68.1 so its very high compared to yours. I think this will be the site for the bone biopsy soon.
So nice to hear that you are still cycling. My husband and I miss it. We recently sold all our road and triathlon bikes to help somewhat with the expenses. Please continue riding the bike and enjoy it while you can. As they say, life is like riding the bicycle, to stay balanced, you have to keep moving.
I got 2 years of relief from Psa rise between Nov 2018 and Nov 2020. But after 6 doses of Lu177, Psa is now rapidly rising again. I think the Xtandi did not do very much because I began taking it only when a research doc said I ought to take it while she worked at Lu177 clinic between doing research work.
So the Xtandi only boosted PsMa expression for my 4th lu177 dose. After that, the Xtandi worked as it was designed to do and interfere with hormone action in Pca thus slow down the Pca growth and thus reduce Psa. I think this action peaked in Nov 2019, a year after starting Lu177. Without Xtandi, I would have seen a much lower drop of Psa and maybe a rise much sooner after 4 doses of Lu177. In 2020, I think Xtandi action of any kind ceased entirely, and Psa went from 30 in July to lowest 7 in about November, after the two doses I had in July and October. I was given Veyonda, aka Idronisil an unapproved drug which is also thought to boost PsMa expression for 2 days before Lu177 and 8 days after Lu177 in 2019. I doubt that did anything at all.
Nobody really measured anything to see if the PsMa boosting occurred. Its guesswork.
I just think that when Pca mutates to not make much PsMa, there is not much any added chemical can do to reverse the mutation in DNA of cancer cells.
Anyway, I still don't know result of scan I had a week ago, and whether I'll be allowed to have Ra223 or end up being condemned to having more chemo which i doubt will work at all. It didn't work in mid 2018, and I doubt it will work now.
I'll do a ride soon. But I am now having trouble with rise in blood pressure, am seeing 200 / 94 despite low resting HR 47 due to fitness. I also have suffered hypotension and even on the bike. This effect of rise in HR and dizziness after sitting then walking is different to hypertension. The hypo began after I began ADT, but I often have to bend over after standing to reduce the effect of blood pressure change between standing and sitting. Doctors have no answers for hypotension; I've asked them, but no answers.
I'm taking some pills for high BP but they have made no difference at all so far. I may have to increase the dose a lot, and of course, then come the side effects.
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