I've been on Lupron only for 5 years, metastatic to bones.
Generic AA would be the next cheapest step, but I notice my new Medicare drug plan shows $2,800 for a year's worth of Nubeqa.
Any advantage to going with Nubeqa other than possible difference in side effects?
No one knows. There's never been a comparative trial.
Thanks TA. That's what I thought you had said previously. Nubeqa seems to be the new kid that everyone is promoting.
Is there any advantage or disadvantage to taking only a "mide" and letting T rise?
What is a mide?
Sorry, darolutimide, enzalutamide, etc. Don't some advocate using those only because they don't drop T?
No. That is a misunderstanding of the androgen receptor (AR). Every human male cell has an AR. When the AR is blocked by an anti-androgen, T doesn't activate the cells. It doesn't matter how high T gets if ARs are not activated. When it gets very hight, T production shuts down anyway.
Thanks for the clarification.
Both are effective against the cancer. Nubeqa is supposed to cause fewer side effects but many patients have no problem with Abiraterone.
I believe by reading posts on this forum that some people have a liver problem afte a short time and more often after 5 years on Abiraterone.
The other thing is that I am already pushed by doctors to start prolia because of the possibility of osteoporosis as a result of low testosterone levels. My testosterone levels are now on degarelix injections alone around 1. With Abiraterone my testosterone levels would drop further down. I believe that our brains also need some testosterone. I already realising that my memory is not anymore brilliant. Therefore I really don't want take Abiraterone plus prednisolone. I understand that the prednisolone is only replacing the lost one, but still I would not be comfortable experimenting with the drug (Abiraterone plus prednisolone).
The other problem could arise that if you stop Abiraterone and prednisolone you could have problem starting producing your own corticosteroids especially if you are using Abiraterone for years.
Again I am not a doctor but they are my concerns about Abiraterone plus prednisolone.
I believe I would take Nubeqa but I am not in a hurry with that either if I don't really need it.
I started Bicalutamide and I will see if it can do the job at least for 6 months. I am fairly sceptical about that but I am trying it now. I know that MarkBC from Canada was successfully on bicalutamide for 19 months and replaced it with Abiraterone plus prednisolone. He introduced Bicalutamide when his PSA get to 1. His PSA dropped in 4 months from 1 to 0.1 and was slowly rising back to 1 in 15 or so months. I believe this is a Canadian way and it is not a standard of care in the USA. My MO did his PhD in Canada so he was ok to try it even I am in Australia.
Yes, docs here don't use bicalutimide in that manner, except outliers.
Still evaluating choices, but they all seem to have issues.
Can you SBRT your visible Mets if you have any? I don't have Mets but my prostate is CRPC and I couldn't kill the nmCRPC with SBRT. The cancer growth back and I still don't know much.
What is your PSA now and why would you do something about but until now it was ok to wait? What changed? Did you have a recent scan which shows progression or was you just like to do something before it gets out of control like in my situation? In my situation nobody reacted for 6 months disspite the PSA doubling time of 2 month.
Last PSA was 1.37. PET scan 1/3
Would you start after the pet scan (preferrebly after a new PSMA pet scan) with Bicalutamide? Professor Emmett said to me that the PSMA pet/CT with contrast scan is the best scan.
You said "I don't have Mets but my prostate is CRPC and I couldn't kill the nmCRPC with SBRT. The cancer growth back."
So you had SBRT radiation to the prostate. Are you saying that you had become CR (castrate resistant) from prior ADT (hormone therapy), and that caused the SBRT to fail? And so you think SBRT might fail against future mets (spread)?
That's happening. I started Bicalutamide 3 weeks ago and I will have a PSA test on Tuesday to see if it helps. My RO thinks that the PSA is actually produced by Mets in pelvic lymph nodes but they are simply just not visible on the PSMA pet scan or alternatively that the Mets are somewhere and not visible on the PSMA pet CT scan with contrast because they are PSMA negative cancer. My RO totally ignored the PSMA pet scan finding that I still have cancer in my prostate and it is maybe growing. My RO said that it is possible that the cancer in my prostate is dead (from the SBRT) but still producing PSMA SUV max 6.5 value. I would like to get a second opinion about this opinion that there is no active cancer in my prostate.
My two PSMA-PET scans make all lesions visible. A lesion still growing in prostate that had IMRT, second lesion in pelvic node shrinking after IMRT, and a new node up in abdomen. All three now contributing to PSA 3.71. Unlike you with long ADT, I am now just beginning it. Two points:
My prostate recurrence is from lack of ADT, while you attribute your prostate recurrence to radio-resistance from long ADT. I had not heard of that.
Your RO thinks prostate cancer could be dead from SBRT but still making PSA. But if it makes PSA, it must be only declining, still alive with possibility of growing back like mine.
My RO thinks that I have cancer in my pelvic lymph nodes but the PSMA pet CT scan didn't pick up the cancer there yet or that the cancer there is not PSMA avid (PSMA -) He wants me to do the FDG pet CT scan, but I am not so sure to radiate myself with a new FDG pet scan I have to fund myself (it is not the biggest concern but I just don't feel comfortable doing that scan.)
My RO thinks that despite the PSMA SUV max value of 6.5 in my prostate it is not a cancer alive. Professor Emmett interpreted the PSMA pet CT scan and she saw the only cancer is in my prostate (SUV max value of 6.5) when my PSA was 1.1. now my PSA is 2.
Very good point. My PSA was actually declining after the SBRT of my prostate from 1.4 to 0.23 in 6 months after the radiation. After that a next six months my PSA rocketed from 0.23 to 2. It is a CRPC. I didn't have a second PSMA pet scan after the SBRT.
Before the SBRT of my prostate I had the PSMA pet scan and the PSMA SUV max value of my prostate was 14 a year ago just before the SBRT of my prostate at PSA 1.25 was the PSMA pet scan performed. I also wanted to get an FDG pet scan and my prostate had a SUV max value of 4.5 on the FDG pet scan just before the SBRT radiation.
The FDG pet scan and the PSMA pet scan didn't show any visible Mets. That was the reason that I decided to irradiate my prostate. With visible Mets I would probably just started Abiraterone or Enzalutamide but I stayed on Firmagon injections only because my RO was against that I get Abiraterone after radiation. He said that he will not SBRT my prostate if I get Abiraterone after radiation. I was happy not to take Abiraterone therefore I agreed with my RO.
I'm told I don't qualify for radiation.
My feeling is that it is better to do a radiation before the cancer in the prostate turns CRPC. Your PSA is now slowly rising. Just add Bicalutamide after the PSMA pet/CT with contrast scan.
I am not a doctor, better check with someone competent so you don't end up like me breading out with unsuccessful radiation a most resistant to radiation strain of cancer in your prostate which will repopulate your prostate (like maybe in my situation happened?) Professor Emmett said that the most resistant strain in my prostate survived.
The liver problem is easy to pick up and reversible. You get liver tests every 6 weeks. Interestingly it often appears at the very beginning then does not recur on rechallenge. If the brain needs testosterone the testosteronee blockers will have the same effect. Testosterone can not affect a cell without a receptor. In Rheumatology we treated people with steroids for many years. Then the new medications came out making them unnecessary. We had no problem getting them all off. It just took time and patience.
Ok, I understand. Still I was until 3 weeks ago on ADT degarelix injections alone and my testosterone level was 1. That is much better than in the future with Abi or Enza or Nubeqa.
Maybe. My brother and I are on both. Minimal side effects but we are both very active and lift weights.
I am most concerned about my brain. Low testosterone is not good for our brains? Physical exercise is good for your brain and memory? Maybe you sleep better and a memory consolidation is better after a little bit of endorphins. I am just gessing. I have sleep apnoea plus burning prostate. Neither of these condition is good for sleep. Plus my brain suffering from low oxygen levels during sleep. I am using the machine and that helps but it is not always the same sleep quality.
What do you mean by a burning prostate? My prostate did not feel anything from radiation. I would think that a lesion remaining in the prostate might cause soreness, or radiation cystitis in the bladder might burn.
Maybe it is only from inflammation according to the RO. I just know that six months after the SBRT of my CRPC in my prostate when my PSA was 0.23 I could sleep trough the whole night and I was very surprised with that. Now six months later when my PSA is around 2 I have to go to the bathroom 7 times during the night and the RO is saying that it is because of inflammation of my prostate.
I am not a doctor but I would connect the dots and say that professor Emmett had wrigh that the to the radiation most resistant CRPC strain survived and it is most probably repopulating my prostate. That's why my PSA is rising. It is not because of some invisible yet to the PSMA pet scan cancer in my pelvic lymph nodes like my RO believes.
What we could do is either a biopsy of my prostate or a new PSMA pet scan and maybe a multi parametric MRI?
My RO rejected a biopsy and also a new PSMA pet scan to see what is happening in real time with my CRPC.
Well I am not a doctor therefore I have to believe what they are saying to me.
The last result of the mpMRI was PIRADS score of 5 and my RO thinks that it is not a cancer.
I have not read that radiation inflames the prostate or causes any sensations in it.
I think radiation can irritate the bladder and cause urinary frequency and urgency, although I and others had those problems before the cancer. And the bladder can suffer late radiation cystitis where the irritation causes bleeding and clots. The precision of SBRT is supposed prevent all that. I have not experienced any urinary effects that I can blame on the IMRT that I have had twice in 3 years, for prostate and a pelvic node.
Radio-resistance of a prostate lesion is possible, where the cancer cells repair their DNA and revive:
ncbi.nlm.nih.gov/pmc/articl...
northernurology.com/urologi...
My problem is that despite I had some radiation to my prostate my PSA is rising and we don't know why.
We just simply disregard the PSMA pet CT scan and the multi parametric MRI pirads score. claim victory. My RO was irritated that I was questioning the results of the prostate irradiation although it is not uncommon that the cancer comes back I believe in around 30% of cases.
After radiation of the prostate, PSA often bounces on its way down as the cancer in the prostate dies.
BCR (biochemical recurrence, continued rising PSA) after radiation can come from the lesion in the prostate still active and from mets in lymph nodes. My PSMA-PET scan showed both.
I think the 30% recurrence pertains to prostatectomies that do not remove all the cancer, not radiations.
In my case (I have a CRPC in my prostate) the recurrence is 70%. After radiation I stayed on ADT.
I don't have any on the PSMA pet CT scan visible Mets.
The PIRADS score is 5 and to be realistic I still have a cancer in my prostate one year after radiation.
I started Bicalutamide 3 weeks ago.
If I find a cancer outside of my prostate I will SBRT it but because I am not curable I am not going to have whole pelvic lymph nodes radiation.
According to professor Emmett I will live very long. I am de Novo polymetastic and I am already more than 5 years and 8 months alive and just added Bicalutamide to my ADT. Therefore I am very optimistic about my future. I refused denosumab because I don't want to get side effects. If I break a bone I will reconsider my decision. My last PSA was 2. I feel tired because of the ADT and my memory is not great but I am still able to organise my life. I think it would be great if you would ask for a second opinion about your treatment.
I am in a process of getting a second opinion from professor Izard who was the first doctor I consulted after my shocking diagnosis. I am not in any hurry.
You said, "In my case (I have a CRPC in my prostate) the recurrence is 70%. After radiation I stayed on ADT.... I still have a cancer in my prostate one year after radiation... I feel tired because of the ADT..."
You have recurrence in the prostate after radiation. What does the 70% refer to?
Like you, I still have cancer in the prostate, grown much larger, over two years after radiation. But unlike you, I did not use ADT after radiation.
Like you, I am now on ADT. But unlike you, I feel no effect from it after a month.
So much variability in this disease. Could you have been radio-resistant in addition to now being castrate-resistant?
I recommend to ask for a second opinion. I am not a doctor.
I have opinions from my medical oncologist who is conservative and my urologist who is more aggressive. . What would another opinion be about?
It is up to you, whatever you feel comfortable with.
Most important is that you are psychology stable and content. We all here on this forum have a terminal illness and the most important is that we are happy with what we are doing. I am part of this forum to navigate better the possibilities and to understand my options. My first MO was professor Epstein here in St Vincent's Hospital in Sydney, Darlinghurst. His opinion was that some people live long on ADT alone. I still very thankful for his opinion and I am trying not to poison myself with drugs. He also wanted me to try intermittent ADT. I rejected that because I have too many distant Mets in my neck and don't want my cancer to spread to my brain.
If I were in USA like you I would probably try to contact Tanya Dorff in a City of Hope.
Hopefully God will bless all of us.
István Hoffmann
So, I should get an opinion from a third doctor about some idea that will come to me that I am comfortable with? Well, since we both have recurrence in the prostate after radiation, you might be interested in an appointment I have with urologist who does salvage HIFU. But it is so toxic that I am not comfortable with it.
Exactly. I would not do it. Can you kick the can down the road and start some system treatment? I am on ADT and realised that adding Bicalutamide to it hopefully will slow down the cancer in my prostate.
I know our member Brysonal also had Gleason score 6 and the British bullied him into HIFU and it was not successful and after that he had to go to Finland and didn't live anything on the table and now he is NED.
I think your biggest mistake was that you didn't get at least for a limited time ADT with radiation therapy.
I personally believe that HIFU is not for my stage of the cancer. It didn't work even for Gleason score 6.
Where do you live? Do you have any cancer centre of excellence nearby?
Yes, did not start ADT until mets began. Live in Kentucky with no COE nearby.
Could you move to California to LA, City of Hope? I just talked to an American Lady from LA and she thinks that City of Hope is Les expensive to live (more affordable).
You could see Tanya Dorff in a City of Hope.
California and LA are the most expensive places to live in the US, even if I wanted to be uprooted from present comfort. The only advantage I see is that City of Hope is in one of 11 MAID states 
Joking.
I don't understand but the lady from LA said to me today that City of Hope is not so expensive, but maybe I didn't understand her correctly. I believe that it must be expensive. I live in a room in Darlinghurst close to the local hospital and currently I am paying 190 Australian dollars for my little room. We rented out our flat which is about 30 minutes drive from the major hospital in Sydney. I am ok here as everything is walking distance from my room. From my flat I would need to drive a bicycle everywhere because walking would take much more time to the shop, even to the closest restaurant would be a major undertaking. It is possible but living in a City is very convenient.
Yes AA (Zytiga) plus pred. was the first line of defense here in Canada when it came time for me to go to ADT. I took Zytiga and Pred. from 2019 to 2023 with great results. PSA went from 13 down to 2 (I still have my prostate). However as with almost everyone on ADT the cancer became resistant and my PSA shot up to 35 by June/2023.
I took 5 more rounds of Docetaxel from July to November 2023, but it did not work this time (I had 6 rounds of Docetaxel in 2016 with great results). PSA kept shooting up and more mets. in ribs and lymph. By this Nov. my PSA was 58. I have now switched to Cabazataxel. After 1 round my PSA is down to 46 so FINGERS CROSSED. If this fails I am looking at either another type of ADT or Provenge.
What are peoples thoughts on how effective the second go at an ADT is if the first one (Zytiga in my case) is no longer working?
Can you get a biopsy of your cancer and if you have BRCA mutations you could maybe add carboplatin to cabazitaxel.( I am not a doctor and I believe it is very toxic, therefore I am not prescribing) or maybe you could get that New Astra Zeneca PARP inhibitor phase I clinical trial what my MO recommended to me? I am not sure if you are passing the inclusion criteria. If the New parp inhibitors are successful they will have less toxicity.
I think you might need to submit your question separately for people to notice and answer. But I think I have read here and on UroToday that switching drugs is not very effective.
I’m on AA/pred but with Lupron- dual therapy and they are complementary. My MO has plans of things to shift to when it starts to fail, based on trial and study results.
here is a post i did a year ago on a case for darolutamide
I tried for Nubeqa and my insurance company said no. I would have preferred to avoid the steroids taken with AA. I tried Enza and it hated me only a little less than I hated it. So on AA until I am CR.
Thanks. How's AA going so far? How long now?
QOL great, like a breath of fresh air after the Xtandi. My last PSA was .05 end of Oct. Next PSA test end of January and also CT and Bone scans in January so hopefully still holding the beast at bay.
What is the drug plan to which you refer?
Been taking NUBEQA every day for 18 months (600 mg. in morning and 600 mg. at night). It's expensive and without insurance, it was over $13,000 per/mo, I have medicare parts A, B, F and D (through Wellcare. As a result, estimated annual cost for 2024 is less than $5,000- a big relief! However, the jury is still out about its effacacy. With more testing scheduled for 1Q24 I'll have an answer, soon. FYI, I received a grant from something called the Wellness Foundation (or something like that) which helps with cost of meds. Ask your doctor about it. Good luck!
Thanks. I have Wellcare Classic starting 1/1. On a lark I checked the price and came up with $2800 per year. Pleasantly surprised. Still considering all options.
Yes,the law was changed, thank goodness. I think even better coverage in 2025.
I have been using Nubeqa as a monotherapy for the past 5 months with good results. It is keeping my numbers down, while my T is normal. Tumors have also shrunk.
Have monitored your estrogen levels? I am just thinking with all the extra unused T floating around it has to go somewhere. If it is all going down the aromatase pathway then one would need to monitor your unmetabolized estrogens.
I am presently doing pBAT non SOC along with intermittent darolutamide and intermittent orgovy. I try to keep my T under 20 while on low T cycle and during high T averaging 1500. I need to make sure my unnmetabolised estrogens are kept in check so I sometimes take letrozole but lately i just take NAC and pterostilbene every day.
Here is a post i did on why I (think) i got cancer
healthunlocked.com/fight-pr....
I am not monitoring my estrogen, but I imagine that is why I am having a problem with slightly enlarged (not visible) breasts. Going to look into Tamoxifan.
Would love to talk to you more about this. I have a feeling that Nubeqa alone will not keep this at bay forever and my idea is to pursue the BAT therapy when it loses it's effectiveness. Is this something that a doctor is overseeing for you, or are you doing it yourself? Are you adding in T when you are cycling on the Orgovyx?
Sure we can talk anytime ill send you a chat.
As far as BAT my OC is monitoring me and is all onboard with me persuing my non SOC protocol. I didn’t ask him to prescribe testosterone propianate as I doubt he would and I didn’t want to put him in that position to have to decline prescribing. T-propionate is not SOC.
I get it overseas without prescription.
I don’t take Orgovyx with high T anymore as i have my T at or below 20 when I measure it near or at end of darolutamide cycle. So I will adjust Orgovyx accordingly.
I was very afraid to wait for daro or any ADT failure as your cancer becomes much more aggressive
Where were you at when you started? Any metastasis? So....You are doing high T without any ADT? Just alternating Nubeqa with High T-propionate?
Only side effect I have noticed is a swelling of the nipples.
I was put on Nubeqa 2 yrs ago and went into undetectable but sadly my PSA has started to rise its ugly head...but it did work alongside Lupron while it lasted! On to the next defense! Good luck Good Health!
I have been on monthly Lupron, my choice, and Nubeqa for just shy of three years. No side effects other than the Lupron. Nubeqa can be expensive but my psa has been <0.02 forever because of Nubeqa. In fact I will be starting a holiday mid Jan 2024 per oncologist suggestion.
Started Nubeqa (with my normal quarterly Lupron) this past April...... so far so good..... No side effects except my humor is getting more worn out..........
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 12/30/2023 12:36 PM EST
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