Recurrent PCa, Gleason 9, taking Leuprolide and Nubeqa plus salvage radiation with PSA undetectable now at 5 months post treatment. Holiday?

[Chipichape1]

On sept 2023, radical prostatectomy with Gleason of 9, multifocal Extra prostatic extension, with negative margins , negative nodes and negative seminal vesicles, PSMA negative. At month 6 PSA started to climb, reaching 0.2 at month 8(May) post RP.

With a negative MRI and PSMA, I started Lupron injection in May and Nubeqa 600mg BID and 6 months later in October 2024 (delayed because of incontinence) started 33 sessions of Salvage radiation IMRT to prostatic bed and pelvis.

At 5 months post Nubeqa and Lupron, PSA is undetectable at less than 0.01.

Hope that post radiation it will remain undetectable.

My treatment is a bit unconventional because i don't have any demonstrated metastasis but I am taking Nubeqa plus Leuprolide injection.

The main sides affects are Hypertension, difficult to control with 3 meds (140's and 150's systolic)

and now slightly elevated cholesterol on pravastatin 80 mg plus Zetia, but most importantly is the serious fatigue and some weight gain. Of course ED and libido.

The question is if I need to take Nubeqa for 2 years even if my PSA remains undetectable or I could take a holiday and see what happens with PSAs.

Thanks

[Tall_Allen]

No, you absolutely cannot take an ADT holiday if your goal is cure. Holidays are only for men who must be on lifelong ADT, not for men who are still hoping to be cured with salvage radiation. Think of it like taking antibiotics for a bacterial infection. If you stop taking it too soon, or if you stop and restart, you will select for the most resistant bacteria and wind up with a much worse infection.

That said, you may be able to drop Nubeqa. IDK why you are taking it. If you have an imaging-detected cancerous lymph node, Nubeqa may be beneficial.

[Chipichape1 in reply to Tall_Allen]

Thanks for your reply. The reason why I am on Nubeqa in addition to leuprolide, has to do with a conversation I had with my local oncologist. Initially after my PCa recurred within months, and the PSA started to climbed and reached 0.2, I went to MD Anderson and I was told that I should start on Leuprolide for 6 months and salvage radiation, but because of I was of high risk, a new study just came out that showed that it is better to stay on it for 2 years instead of 6 months.

I came back to my city to be treated by my local oncologist and after discussing the treatment with him, and with the fact that also new recent studies showed Xtandi prolonging survival in another study, it might not be a bad idea to add something like Xtandi, but he believed that adding Nubeqa which has less side effects, may be better considering that I was high risk from the Gleason of 9 and the time of recurrence, which may be almost equivalent to as having metastasis, which actually was never shown on the pre RP PSMA and in the one at MD Anderson. So in reality actually I almost pushed for it ( being a physician ) and he agreed.

That is why I wonder if after the salvage radiation and undetectable PSA few times, I may be safe to stop it before 2 years.

Thanks, and sorry for the long story.

[EmpireGradeCyclist in reply to Chipichape1]

Hi Chipichape1, your story in your posts fills me with concern about your standard of care treatment. I was also a Gleason 9 at diagnosis, but with a high PSA for an under 45 yo (33). I started care with an oncology team at a NCI Cancer Center and they started me on both continuous ADT (Firmagon/Lupron and Zuniga) + radiation three months into treatment. It sounds like you have a great relationship with your local oncologist, but I am concerned about deferring to your local oncologist over thr MD Anderson team. It’s possible there is other research on Xtandi that the local onc may not be up on as compared to the Oncology team at MD Anderson, which is a NCI cancer center (cancer.gov/research/infrast... This is my second go round at a very advanced stage ( Lymphoma in the early 2010s), and I wouldn’t be here today if it wasn’t for the research and care plan from an NCI that far out trip with my local Oncology team could provide.

is your local oncologist getting direction from MD Anderson, or another NCI Institute or academic oncology team? What has been their success rate with advanced stage prostate cancer like yours? These are the critical questions that you need to ask and be comfortable with to give yourself the best shot at a potential cure response or long-term survival IMO.

as with most on here, I would defer to @Tall_Allen who is a savant on all things related to PCa treatment.

(Sorry if this isn’t clear I’m having trouble with my phone in typing and adding text)

[j-o-h-n in reply to EmpireGradeCyclist]

Tall_Allen the savant is always avant and devant of our members.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Chipichape1 in reply to EmpireGradeCyclist]

To summarize: the nccg recommendations are to get started on treatment with BCR when your PSA reaches 0.1 or 0.2 after a radical prostatectomy.

My urologist oncologist who did the surgery suggested ADT and delay radiation for few months until incontinence improves.

I consulted for a second opinion at MD Anderson at that point where a very young inexperienced radiation oncologist saw me. He recommended what the NCCG recommends, ADT for 6 months and salvage radiation to prostatic bed and pelvis, since the assumption is that those are the most common sites where the recurrence occurs. However, a couple of weeks later he suggested that based in a new study, I should be on for two years instead of six months. Since I had issues of urinary incontinence I started treatment at my hometown but decided to see the oncologist, someone I trust and respect.

After discussing with him the fact that I was a high risk cancer with a Gleason of 9, quick recurrence and high risk decipher, and based on newer studies the subject of an additional meds to improve Mets free and OS was decided and he thought that Nubeqa was the better option for which I agreed.

The standard of care for my case of high risk , according to the NCCG is ADT for 2 years and salvage radiation. The nubeqa was extra.

That was why Tall_Allen said why I was even on nubeqa.

Unfortunately the management of prostrate Cancer differs according to who you see.

Some oncologists and urology oncologists believe that hormonal treatment for life is enough with no need for radiation, especially with the new treatments and diagnostic tools available.

In my case, we modified my treatment to adjust and allow my incontinence to improve.

In a couple of months after starting hormonal treatment, my PSA became undetectable and I started radiation which Now I finished .

There is a group called the PCRI which meets once a year in LA and discuss the latest in prostate cancer and the speakers are reknown doctors from top centers from all over the US.

I attended the last meeting in September.

There were in attendance over 600 cancer patients who had the opportunity to discuss their individual cases with different doctors in small groups.

That is my story.

[j-o-h-n in reply to Chipichape1]

Please note: Physicians must wait in the exam/consultation rooms for a minimum of 1/2 hour before consultation with a member(s)s. Billing will be 300% of the going rate.

Signed: The management (p.s. Welcome aboard doc).

Good Luck, Good Health and Good Humor.

j-o-h-n

[swwags in reply to Chipichape1]

Heed Tall Allen’s advice