My brother has advanced prostate cancer

[rasher1]

Hi everyone,

Hope all of you are doing well. My brother diagnosed with stage 4 prostate cancer in August 2022 with PSA of 43. He is 54 years old.He had some spots in bones and mild spots in a lung.

He started hormone therapy in October and Chemotherapy for 6 cycles in November and started to use Nubeqa around December.

After 4 cycles of chemotherapy he had a scan for his lungs and it was all clear. But his PSA just dropped to 1.2 and was going up and down all these months. After his last session of chemotherapy which was in March 2023 his PSA started to going up every month. From 2.2 to 3.5 to 6.5(the recent one). He didn't talk with his oncologist yet. We are very worry about him. Is it possible he is hormone resistant in this short period of time(about 7 months)? What do you think about the next step?

Thanks in advance

p.s: He is living in Vancouver,BC

[Tall_Allen]

Maybe just some of his metastases are hormone/chemo resistant and those metastases can be irradiated. An NaF18 PET scan may be able to find his active bone metastases.

[rasher1 in reply to Tall_Allen]

Thanks for replying. But what is NaF18 PET? is it PSMA pet scan?

[Tall_Allen in reply to rasher1]

No- it is a sodium fluoride PET scan - twice as sensitive for detecting active bone metastases as PSMA.

[rasher1 in reply to Tall_Allen]

Thanks. I know a little about the medication and plans. Please forgive me if I ask something wrong. I'm really worry about him.

[SeosamhM in reply to Tall_Allen]

So, while I'm not on Medicaid, their formulary is still the tell-tale for most private insurance companies. I've checked the CMS website, and the infamous December 2015 second reconsideration memo for NaF18 still seems to be the latest, i.e., NaF18 PET is "not reasonable and necessary to diagnose or treat an illness or injury or to improve the functioning of a malformed body member". Bleh.

More bleh: "CMS will reconsider the NCD at such time when the evidence has been published in a peer-reviewed journal." While there have been many comparative studies showing the value of NaF18 PET, do you know of an "evidentiary" study that will meet this vague CMS reconsideration criterion?

[Tall_Allen in reply to SeosamhM]

You can still get it. My friend just had it last week.

[Wings-of-Eagles]

Great advice from Mr Tall Allen, he is very knowledgible trust him. Find the best onconlogist specializing in advanced PC, and or at a renowned Cancer Center.. Take the Doc's advice on treartment .Also down the line..Ztiga and or Xandi ...Lu-177.

Zytiga has kept my PCa in check for 8/1/2 years, intial diagnosis was Stage 4 with PSA of 71. Currently undectablke, Do not lose Hope, there are many many good years to come for you both!

Wings aka Dan in So Cal

[rasher1 in reply to Wings-of-Eagles]

Thanks so much. Does Nubeqa work different from Zytiga or Xtandi?

[Shams_Vjean in reply to rasher1]

All 3 essentially starve the cancer cells of the hormone fuel they need to grow, but in different ways. Nubeqa and Xtandi both block the hormone receptors on the cancer cells, while Zytiga prevents the production of testosterone in a different way than traditional ADT therapy. For those who can afford the cost, Nubeqa is sometimes considered the better option as it does not cross the blood brain barrier, like Xtandi does; and in some cases is effective at lowering PSA without using traditional ADT alongside. The latter can be a big boost for QOL, as it allows the patient to have testosterone without the cancer cells growing, thereby reducing or eliminating many of the side effects commonly experienced with traditional ADT and/or Zytiga. Zytiga is the only one of the 3 which is available as a generic formulation, which makes it much more affordable for many patients, and still highly effective in many cases. Zytiga works best in combination with ADT, and thereby the side effects from lack of testosterone are more prevalent than with the other 2; though some find the brain fog sometimes associated with Xtandi to be equally or even more challenging.

[rasher1 in reply to Shams_Vjean]

Thanks for explaining, but my question is: Is it possible that Nubeqa doesn't work and changing it to Zytiga or Xtandi make the condition better?

[Shams_Vjean in reply to rasher1]

Doubtful, to my knowledge, it’s more likely to get a positive response from Xtandi or Nubeqa after Zytiga fails, than the other way round.

The thing to understand here, IMO, is that when the cancer progresses to hormone resistance many of the cells have mutated such that they feed off something other than testosterone; ergo suppression of testosterone with ADT and/or Zytiga becomes increasingly ineffective. Xtandi may block the receptors on mutated cells for a while but continued cancer cell mutations will eventually make it ineffective too. I think the ‘jury’ may still be out on weather or not Nubeqa extends suppression better that Xtandi after Zytiga and/or ADT fails.

In the US the “on label” use of Nubeqa for patients with metastatic & hormone resistant status is only when administered in conjunction with a taxane chemotherapy. Which it sounds like what has been happening in your brother’s situation.

I’d say Tall Allen is, as usual, most on target with the best next steps in this situation. Sounds like you have some highly respected MOs available to consult. Trust their expertise and make the days you still have together count as best as you are able to.

No one can tell you for certain at this stage how long it might be. The response to treatments is very individualized, there are yet more treatments available for your brother and newer ones in the works. Don’t lose hope, keep your focus on enjoying your time yet together, and trust the experts to extend that time as best as they are able.

Wishing you and your family all the best in the journey forward.

[rasher1 in reply to Shams_Vjean]

Thanks for your time and information. Wish you all the best as well.

[RyderLake2]

Hello,

I live in British Columbia as well. Your brother needs to schedule an appointment to see his oncologist as soon as he can. As mentioned earlier, he should discuss with him (or her) going on second tier Androgen Deprivation Therapy (ADT) drugs like Xtandi (enzalutamide) or Zytiga (abiraterone). The BC Cancer Agency (BCCA) in Vancouver does PET scans including the Sodium Fluoride NaF18 PET scan that Tall Allen mentions. Good luck!

[rasher1 in reply to RyderLake2]

Hi, Thanks so much. I will tell him about that. would you please let me know about the best oncologist and urologist in Vancouver? I know that he goes to BC Cancer Agency and I ask him the oncologist name. He does not like to search about his condition. And one more question. Does Zytiga or Xtandi work different from Nubeqa? Because he is already on Nubeqa.

Thanks again.

[RyderLake2 in reply to rasher1]

Hello,

You have asked several questions. I will try to answer as many as I can. First your brother needs to be in the care of an oncologist not a urologist. I live in the Fraser Valley so my oncologist works at the Abbotsford Regional Hospital and Cancer Clinic (ARHCC). He is great doctor and I consider myself very lucky to be his patient. Dr. Martin Gleave at the Diamond Pavilion (located at VGH) is the co-founder and Executive Director of the Vancouver Prostate Centre. He is also a Distinguished Professor of Urological Sciences at UBC. I would start with him.

Nubeqa is the brand name of darolutamide. It is made by Bayer the same company that makes aspirin. It is also a member of the same family as Xtandi (enzalutamide). They are both lutamides. They both belong to a class of medications called androgen receptor inhibitors. Nubeqa is the much newer drug and trials have shown it to outperform Xtandi. Here is the problem. My understanding is that Nubeqa is a pill for PCa that has not yet spread to other parts of the body. In other words, the prostate cancer hasn't metastasized. If your bro has spots or lesions on his bones and possibly on his lungs then he has metastatic cancer and Nubeqa might not be the answer. Your brother needs to talk to a medical professional about this.

Finally, there are some interesting clinical trials going on at the BC Cancer Agency (the same complex as VGH). I am currently on one called SPLASH which is investigating the use of radiopharmaceutical drugs. Your brother might want to look into that as well. I go into Vancouver once a month and the care I receive at the Cancer Agency is outstanding. Good luck!

[rasher1]

I don't Know how to thank you for your time and information. I will talk with my brother. The blood test result just came back yesterday and he tried to talk with oncologist today. (I think he couldn't yet).

He has a urologist for his hormone therapy that visited my brother in his clinic every 3 months and an oncologist in BC Cancer Agency!

I will let you know as soon as he could meet his oncologist.

[Granica4818]

Hi I was wondering how old you were? My husband also Is fighting this battle

[rasher1 in reply to Granica4818]

Hi, I asked for my brother. He is only 54.

[Granica4818 in reply to rasher1]

ok my husband is 55. So young

[rasher1 in reply to Granica4818]

I know, they are so young. Hopefully these treatments work so long for them.

[Granica4818 in reply to rasher1]

Yes i will keep praying.

[chrisrock]

Yes, it's quite possible to get hormone resistant in this short term. He needs to have PSMA PET CT scan to know the current status of disease and might need to change the treatment regimen. Please discuss with your medical oncologist...

[rasher1]

Thanks very much for responding.