After 4 years of being hormone sensitive PSA is rising now while on single ADT (Zoladex).
Is this when I become castrate resistant. What are the symptoms confirming this.
Do you need testosterone to rise as well as the PSA to confirm castrate resistant.
I asked for PET scan but might not be approved.
Still only offered CT and MRI. They only show the metastatic disease on ribs and pelvic bone that I had at diagnosis. There was some uptake on one of the sites recently.
Not sure what the next step will be. SOC wants to wait until PSA is at 2.0 before adding another drug or that is when I would be approved for the next step. Crazy to wait for the fire to be out of control before doing anything.
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Islandboy2021
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Think of castration resistance as a gradual process rather than an either/or binary state. I think darolutamide or apalutamide is a good choice. What decision do you want a PET scan for?
I read up on your profile only yesterday Islandboy2021. I’m pretty much where you were 4 years ago at diagnosis - stage 4 with bone mets in spine T5 vertebrae and pubic bone, no soft tissue spread. Diagnosed 2 March with no symptoms aged 52.
My treatment pathway matches yours it seems:
Zoladex started a month ago
Docataxil chemo (first of 6 cycles starts in two weeks)
Radiotherapy to prostate and SABR to mets
Reserving Apalutamide, Enzalutamide and Abiraterone etc for later on.
You’ve done well to control your PSA this long IMO. Your MO will likely add one of the above, or a mix, to your regime. From what I understand, as others have replied, becoming castrate insensitive or resistant takes time. There’s some way to go with treatments yet.
When there is evidence of disease progression in bone and ct scans you may discuss adding abiraterone or doing chemo. If financially possible you could investigate the possibility of getting Lu 177 PSMA treatment in Austria or India,
For younger people I wouldn't recommend early Lu 177 PSMA treatment even if it is free. Only if the life expectancy is less than 8 years. It has lot of negative side effects, plus radiation adds up. You can do only limited cycles of radiation. Therefore better to save it for later. I am not a doctor, but I wouldn't volunteer for this treatment early. And I definitely wouldn't pay for it. Maybe if you can get into a clinical trial or if your oncologist recommends it. This is still very much experimental. Better to wait untill they know more. Why would you suffer from the side effects?
You are talking about all these negative side effects and radiation. adding up but without providing any scientific reference to support for what you are saying.
Lu 177 PSMA treatment is not new. It has been used abroad for 10 years at least. I had Lu 177 PSMA treatment in Munich 6 years ago without any negative event.
The only situation when there could be significant side effects is when used in people with diffuse infiltration of the bone marrow because of multitude of bone metastases.
Lu 177 PSMA treatment has been proven to prolong life and also be more effective than cabazitaxel.
There are several clinical trials in the USA to use LU 177 PSMA in metastatic castration sensitive patients after chemo and even before chemo, early in the disease process.
I still wouldn't have it myself at younger age. Maybe later. I still believe it is better to wait untill the nuclear medicine scientist make more improvements. I am very happy for you. I am not recommending it like a miracle cure. It can have it's place later. Maybe if your oncologist runs out of options. Than maybe yes. I would save this for later. Sorry having a different opinion.
I just want to know what is your scientific information to have the opinion s you have about Lu 177 PSMA treatment. This is an effective therapy prolonging survival. You can not start saying that it has only a place in very advanced disease if you do not have data to backup that up.
Where are the data that Lu 177 PSMA can not be used early in the treatment? Where are the data showing the terrible side effects if it is use early in the disease process? Where are the data showing that it has only a role when the disease is advanced?
Hallo Tango65! I am very happy for you that you are doing great 6 years after your Lutetium PSMA treatment in Germany. I am just an electrical engineer. I studied biomedical engineering, but I am not a doctor. If your doctor recommended this treatment go for it but I personally wouldn't pay for it from my pocket overseas. You have psma+ and - prostate cancer. Chemotherapy would kill bought but lutetium would kill only the psma+ under certain condition.
As you said:"Tango651 month ago
The Hofman's team in Australia determined 2 factors associated with poor response to Lu 177 PSMA treatment.,
Mets with PSMA SUV values < 10 and a metabolic tumor volume > 200 ml determined by a FDG scan.
ascopubs.org/doi/abs/10.120..."
I found an interesting information for you. Here you can find the information about the warnings related to Lutetium psma treatment.
It is a misconception that chemo kills all cancer cells. If that were the situation metastatic prostate cancer could be cured and it is not.
Lu 177 PSMA may kill all cancer cells in a metastasis depending in how many cancer cells expressing PSMA are present in comparison with cancer cells not expressing PSMA. The beta particles emitted by Lu 177 PSMA may travel up to 1 mm around the cancer cells the Lu 177 PSMA attacks, which is a pretty good distance when we are talking about cells.
If the PSMA expression of the cancer is low or most of the cancer does not express PSMA, Lu 177 PSMA should not be used.
These situations usually happen when the Lu 177 PSMA is used late when the cancer is very advanced, like it happened in the VISION trial. The earlier it is used most probable it will be more effective. There are randomized control trials trying to show if this assumption is correct.
It was very effective in my case, since one treatment took care of all the metastases which remain PSMA negative up to today. No doctor prescribed the Lu 177 PSMA treatment 6 years ago. I was aware of the PSMA PET/CT studies at UCSF and got one, they found the mets and I arranged to go to Munich to be treated with Lu 177 PSMA.
The problems described in the Harvard blog happens when Lu 177 PSMA is used late in the disease process and many patients have extensive bone metastases and diffuse bone marrow infiltration. In this situations the Lu 177 PSMA may affect the bone marrow causing all these problems. People with diffuse bone marrow infiltration by the cancer are not treated with Lu 177 PSMA in some places in Germany and they are consider candidates for Ac 225 PSMA treatment,
I will ask professor Joshua to enroll me in a clinical trial.ć for lutetium psma therapy. I don't want to pay for it from my pocket. Plus clinical trials offer for me more security. I am very happy for you.
i had a 68GA PSMA PET/CT last week, more than 4 years after starting Degarelix ADT and early chemotherapy, and all my bone mets gone according to the PET scan.
i only have SUV 14 lesion in my prostate and it causing me problem with urination.
i will probably just SBRT my prostate, but I am not sure yet. I will see a genesis care RO and my MO next week.
my only concern is that maybe my bone mets converted into PSMA negative mets. I have some neurological problem in my legs.
I already asked last time just before my 68Ga PSMA PET/CT scan professor Anthony Joshua about this, but he simply said no.
i don't know why he said no.
.It is very difficult to communicate with him. I believe that he thinks that I don't need it, but he didn't explained why he believes that i don't need it
I can ask him again next week on Thursday when I see him again.
He is the best Medical oncologists here in Darlinghurst.
i could ask for that scan the genesis care RO (who actually ordered the PSMA PET scan for me in order to see if I have active mets) next week before I see professor Joshua.
Professor Anthony Joshua thinks that I don't need any pet scan as my PSA is still 1.26 and said to me that we already know that you are metastatic therefore you don't need any pet scan.
i was very surprised when all my bone mets gone on Degarelix and early chemotherapy and initial 4 x 68ga PSMA PET scan with 164MBq alone.
i had the FDG PET scan on Friday and the concordance between this PET scan and the 68Ga-PSMA PET/CT scan from 15 days earlier was good.
PC only in my prostate and no mets.
my PSA was 1.5 on Monday. The PSA doubling time is about 2 to 3 months now.
Now I have to make a decision am I going to SBRT my prostate or not.
i am only on Degarelix injections for almost 4 years and 5 months. At the diagnosis I had 15 mets mainly in my spine and neck under my skull.
i did the PSMA PET in order to see if I have any active metastasis.
Before the PSMA PET I was told by the genesis care RO that radiation therapy of my prostate would not extend my life according to the results from the stamped trial.
But now we changed tone and discovered that the cancer in my prostate is hrpc and therefore good idea to SBRT it.
what to do now? The PSMA SUV max value is 14 and the FDG PET SUV max value is 2.5 of the prostate. They would radiate the whole prostate as 95% of the prostate is effected by the cancer.
i don't feel comfortable with the radiation if it will not extend my life as I believe that radiation will interfere with my bone marrow and immune system. (Not a good thing in a prostate cancer fight.)
plus my first oncologist professor Richard Epstein advised me not to rush with local therapies until maybe just before the end.
actually he advice me to use only global therapies. The problem is that without the MRI Linac of my prostate i would not be able to get rid of the cancer from my prostate.
they recommended to stay on Degarelix injections only and save Nubeqa for later. What do you think about this approach?
i would be more comfortable getting Nubeqa also parallel to the SBRT of my prostate.
Good news the metastases are under control and they were not detected by a PSMA and a FDG PET/CT.
In the USA nubeqa is only approved for non metastatic CRPC and for MHSPC. Once the cancer has mets it is considered metastatic even when mets can not be detected.
I would seriously consider to irradiate the prostate and pelvic lymph nodes, even when the treatment will not prolong life, to try to reduce local problems along the road. With the new machines, particularly the MRImedian machine (MRI linacs) they could iradiated the prostate with high precission.
There could be some problems with the immune system during radiation but they seems to be transitory. Others have the opinion that the radiation have an abscopal effect and the immune system it is stimulated to attack the cancer. There is a large release of prostatic a tumor antigens when the cancer is irradiated and they may cause this stimulation.
There are many articles published about these subjectsf, just do a search at:
in Australia this are the requirements for the PBS script:
Castration resistant non-metastatic carcinoma of the prostate
Clinical criteria:
The condition must have evidence of an absence of distant metastases on the most recently performed conventional medical imaging used to evaluate the condition,
AND
The condition must be associated with a prostate-specific antigen level that was observed to have at least doubled in value in a time period of within 10 months anytime prior to first commencing treatment with this drug,
AND
Patient must have a World Health Organisation (WHO) Eastern Cooperative Oncology Group (ECOG) performance status score no higher than 1 prior to treatment initiation,
AND
Patient must not receive PBS-subsidised treatment with this drug if progressive disease develops while on this drug,
AND
Patient must only receive subsidy for one novel hormonal drug per lifetime for prostate cancer (regardless of whether a drug was subsidised under a metastatic/non-metastatic indication); OR
Patient must only receive subsidy for a subsequent novel hormonal drug where there has been a severe intolerance to another novel hormonal drug leading to permanent treatment cessation.
Treatment criteria:
Patient must be undergoing concurrent treatment with androgen deprivation therapy.
Prescribing instructions:
Retain the results of all investigative imaging and prostate-specific antigen (PSA) level measurements on the patient's medical records - do not submit copies of these with this authority application.
The PSA level doubling time must be based on at least three PSA levels obtained within a time period of 10 months any time prior to first commencing a novel hormonal drug for this condition. The third reading is to demonstrate that the doubling was durable and must be at least 1 week apart from the second reading.
the Australian PBS is asking to provide evidence that your mets are not visible on the latest nuclear medicine bone scan and CT scan and that your PSA is doubling over the last 10 months.
therefore i am satisfying that requirements. Even on the PSMA scan my mets are not visible yet.
we have here ia clinin PeterMacCC a clinical trial sponsored by Bayern.
in this information about a trial they say that 90% of participants have mets which are visible on the PSMA PET scan. My mets are not visible now even on a PET scans.
would you add enzalutamide or Abiraterone plus Prednisone now before the SBRT? After all my cancer is now hrpc?
they are talking about that maybe in my prostate that hrpc status set in earlier than in my spine therefore after radiation of my prostate and the limph nodes in my pelvis I could stay on Degarelix injections only.
why could not I just in case escalate my treatment to the next level at least for 6 months to one year just in case?
what do you think about this point? Would it be maybe safer for me?
in a Lutetium PSMA therapy they just added enzalutamide now.
before they didn't have enzalutamide parallel with Lutetium treatment. We all know that enzalutamide would prevent repopulation with cancer if it is effective.
I will consider radiation of the pelvis (no benefit in survival but it may help with local control) and I will discuss starting abiraterone which treats, castration sensitive and castration resistant cancer and it has one of the longest overall survival in the RCTs.
i agree, but the genesis care RO said that he will not radiate me if I take any of these (abi, enza, apa or Daro)
i didn't ask him why not?
maybe he just wants to watch how my PSA is declining after the radiation as they have a theory that maybe my cancer (PSA) is only in my prostate, therefore I could simply continue with Degarelix injections only.
if I would take Enza than it would mask the PSA and we would never know if my cancer is producing PSA outside of my prostate.
do you understand?
maybe it is not good for me to deprive me from abi, enza or Darolutamide just to satisfy their medical curiosity? Or could it be also beneficial for me to know if my cancer in my bones is also CRPC?
do you understand my concern or at least my question?
I'm kind of going through what you are. My PSA was 165, 15 weeks after surgery. Immediately went to Oncology was was put on Lupron and Apaludimide ( Erleada ). PSA dropped to .20 in 6 months, but has been rising back up ever since. I'm now on a Xofigo program while still taking the Lupron and Erleada. I take 6 injections, once every 30 days. Have completed 2 so far and will have imaging done after the third. My last PSA was just under 12 about 6 weeks ago. I think I drive my doctor nuts complaining about my PSA all the time, but to me if the PSA is rising, the cancer is spreading. But I'm no Oncologist so I could be totally wrong. It just gets annoying spending your days wondering how much your PSA is up and where do you go from here.
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