I have been on Zytiga for 32 months. PSA went from 76 to < 0.008 after diagnosis Nov 2017 but then up to 0.06 in the last 3 months. CT followed by last week MRI has confirmed return of soft tissue Mets to T , C and L spine even with basically non detectable PSA. At diagnosis I had spinal compression at T9 and surgery and rehab to walk again. I am now feeling similar mid/ lower back pain. From recent generator testing looks like no mutations.
Lu177 would be one choice but not approved in Canada (where I live ) . I was hoping it would be approved in US/ Canada in 2020 but no signs yet?
I know chemo could be a choice but not one I favour.
Not sure that Xofigo ( radium 223) will work with soft tissue Mets but my alkaline phosphotase has gone from 80 to 160 if that means anything.
Might also be able to do surgery again and/ or stereotactic radiation. I am now 58 , took a couple of Tylenol and went and played golf with my son today. But more tumour growth, pain and a second spinal compression could quickly stop such activities.
Not sure if BAT could help.
Input welcomed!!
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nobaday
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Very strange to find those mets with such a low psa. I’m guessing the low psa would render the Lu177 ineffective. See what the smarter minds than I have to say here.
Some kinds of prostate cancer don't put out much PSA. It might be a good idea to get a biopsy of that soft tissue to see if it expresses something actionable. Chemo is probably your best bet - I'm not sure what you have against it.
Can they look at bone alkaline phatase separately? - if that is high, Xofigo might work.
You can't use BAT- it's not for symptomatic progressing PC.
Tall Allen. Yes chemo was suggested for me under SOC, likely with carboplatin. Head MO said he did not think a biopsy beneficial to determine treatment.
Why do you say I can’t use high testosterone. I have some periodic back pain taken care of by Tylenol/ Advil. I could stand more pain for potential benefit and not doing 6 months of chemo. The resistant cancer cells in my spine tumours could be killed off in a high testosterone environment.
NCCN and the AUA/ASTRO/SUO guidelines are all now recommending that all men with metastatic CRPC have genomic analysis done. I would add histology, and IHC. Since those guidelines were published, the FDA has approved PARP inhibitors for all men with BRCA mutations. Half the PARPinhibitor-eligible men will only have somatic mutations.
Here's what NCCN writes in its latest physician guidelines:
Somatic Tumor Testing
• Recommend evaluating tumor for alterations in homologous recombination DNA repair genes, such as BRCA1, BRCA2, ATM, PALB2, FANCA, RAD51D, CHEK2, and CDK12, in patients with metastatic prostate cancer. This testing can be considered in men with regional prostate cancer.
• At present, this information may be used for genetic counseling, early use of platinum chemotherapy, olaparib, and/or eligibility for clinical trials (eg, PARP inhibitors). Clinical trials may include additional candidate DNA repair genes under investigation as molecular biomarkers.
•Somatic testing may require repetition when prostate cancer progresses after treatment.
• Tumor testing for MSI-H or dMMR can be considered in patients with regional or castration-naive metastatic prostate cancer and is recommended in patients with metastatic CRPC.
• DNA analysis for MSI and immunohistochemistry (IHC) for MMR are different assays measuring the same biological effect. If MSI is used, testing using an NGS assay validated for prostate cancer is preferred. Hempelmann JA, Lockwood CM, Konnick EQ, et al. Microsatellite instability in prostate cancer by PCR or next generation sequencing (NGS). J Immunother Cancer 2018;6:29. If MSI-H or dMMR is found, refer to genetic counseling to assess for the possibility of Lynch syndrome.
• MSI-H or dMMR indicate eligibility for pembrolizumab in later lines of treatment for CRPC (see PROS-16).
NCCN Physician Guidelines Version 2.2020 PROS-B
Here's what AUA/ASTRO/SUO says in their guidelines:
26. In patients with mCRPC, clinicians should offer germline and somatic tumor genetic testing to identify DNA repair deficiency mutations and microsatellite instability status that may inform prognosis and counseling regarding family risk as well as potential targeted therapies. (Expert Opinion)
I suggest you email these guidelines to your MO and ask for a response.
You are just fantasizing that "The resistant cancer cells in my spine tumours could be killed off in a high testosterone environment." Evidence is the opposite - that those cancer cells will grow super fast in a high testosterone environment. I know of no clinical trials that would allow symptomatic men to have testosterone, and anyone who does is probably a quack.
I have done Germline testing (using blood) but found no mutations such as BRCA 1 or 2.
Mutations (Germline and somatic?) are found in around 12% men tested.
I should have somatic ( tumour tissue) testing as some mutations such as BRCA will only show up in Tumor tissue but not in the blood samples.
I should ask for IHC ( immunohistochemistry) on tissue as this can tell type of cancer cells. Does this mean neoendochrine for example? If they are adding carboplatin (MO said can add carboplatin as ‘aggressive’) to docetaxel anyway what more info for choice of treatment would IHC give?
The expert BAT guys (Liebwitz, Denmead, Schweizer, excuse my spelling) seem to say shocking the prostate cells with high T (2000 or so) after being at castrate levels can cause DNA link breakage, killing cells, diminishing Tumor size. But only works for a percentage of men. And high T does not not fuel growth. What am I missing.?
Yes, among men with metastatic prostate cancer, around 6% have germline mutations and about 6% have somatic mutations. There are blood tests (Guardant 360 and Foundation One) that may pick up somatic BRCA mutations, but if you want to be sure, biopsy the metastasis.
IHC tells you which proteins the cancer is expressing.Histology tells you cell type. Neuroendocrine is just one of many, and a rare one at that. If IHC shows low AR expression, for example, it may lead you away from hormone therapy.
Liebowitz is not a "BAT guy" as far as I know. The others are.You are entirely missing that they refuse to treat symptomatic men like yourself. I've said this several times - was I unclear? The danger is that high T does fuel growth in symptomatic men.
"So many mets with very very low PSA"......is NOT usual . If your testosterone level is also less than 50, then it means your cancer cells might have become Androgen resistant...other possibility is that either you had some Neuro-Endocrine cells in the beginning and they have started multiplying fast or your cancer cells have changed to NeuroEndocrine type. (NE cells release very little PSA)
First thing I will do is to check serum Chromogranin A level, NeuroEnolase level and LDH level. If all 3 of these blood tests are normal..that will indicate that possibility of NE differentiation is very low. However, confirmation of the absence of NE change can only be done by a biopsy.
Why all this is important ? Because the medical treatment choice will depend on what kind of cancer cells we are dealing with now.
I did get my chromayogranin A level checked in early 2019 as a soft tissue tumour was growing at C3. Level was normal. Also testosterone in July 2020 was below detectable limit. The C3 tumour was zapped with stereotactic radiation in June 2019 and no pain since but looks like could be growing again now. All I know about Neuroendocrine is emits low PSA, and is very aggressive but not sure if treatments are different.
Treatments for NEPC are different, involving platinum-based chemotherapy combinations depending on the specifics of the cancer cells. They don't have androgen receptors so all the anti-androgen treatments won't work on them.
The blood tests such as CgA and NSE are good, but are not specific enough to know for sure, especially if you are making a treatment plan for it. NEPC tends to go for soft tissue and organs so I'd definitely want to check.
Provenge is only available in the United States. It is not available in any country that has nationalized healthcare due the cost of approximately $23K per month of additional life expectancy.
Not sure you would be able to get Xofigo with soft tissue mets. If the soft tissue mets are over a certain size (3 cm short axis diameter: see ALSYMPCA trial) Xofigo is not recommended.
I would get a biospy and have it looked at for neuroendocrine PCa cells. I also think you should really consider chemotherapy at this point. I've been through it and it's quite tolerable for most.
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