Anyone with Xofigo?

[petrig]

If you have got Xofigo(Radium 223) what is your opinion about it.Did it work and how did the sideeffects effected your life?

[MarylandGuy]

I won’t have much info for you but watching thread. I had my first injection seven days ago. The side effects have been nausea, vomiting and heavy fatigue. But I already had that from the cancer. The nausea and upset stomach are probably worse now though.

My prostate cancer is in many bone meta and apparently no where else. My pain has changed but I can’t say it is better or worse.

[petrig in reply to MarylandGuy]

Hope it(Xofigo) will help you feel better later.🙏

[Skoda1 in reply to MarylandGuy]

I've had 3 injections. A massive increase in night pain which is getting better (I'm on zomorph and paracetamol). Some diarhoea, but generally no stomach problems. Hope these SEs soon disappear for you.

[petrig in reply to Skoda1]

And for you.Hope so.🙏

[DaveKY]

I am like several of your other replies, new to Xofigo. I am one dose in and get my next one tomorrow. I am 5+ years into prostate cancer with bone mets everywhere. Not much pain or fractures thank God, but high PSA, low blood counts and very fatigued. I have high hopes for Xofigo. Also on monthly Zometa for bone support.

I will stay on this thread and update best I can.

[blabanieh in reply to DaveKY]

My father might be starting Xofigo soon but we are currently worried to start because his blood counts are already low.. (hemoglobin at 7) - what was your hemoglobin when you started xofigo and do you currently receive transfusions?

[DaveKY in reply to blabanieh]

My platelets are low as well, but apparently not enough for transfusion. My last reading was .81 prior to my second dose of Xofigo. I was .82 prior to my first dose. My second dose was delayed a week due to low count and another week because Fedex shipped my Xofigo to the wrong address. So 6 weeks between 1 and 2nd dose.

[DaveKY in reply to DaveKY]

Sorry confused hemoglogin with platelets. My hemoglobin was 9.7

[jedgar1]

I am on Xofigo Extandi and Orgovix 1st treatment a week ago bone and muscle pain and just exausted. I have been taking 12 mg adderral and was fine until Xofigo it is like I never took it. Going to double dose see if it helps

[j-o-h-n]

There are TONS of posts regarding Xofigo in the H.U. "Search Health Unlocked" history file. Just do a search on Xofigo and review them (see upper left portion of this screen). .

Good Luck, Good Health and Good Humor.

j-o-h-n

[Seasid]

Do you have bone pain?

[petrig in reply to Seasid]

There are always some kind of pains but they might be caused by medications.

[Seasid in reply to petrig]

I was saving money for xofigo for a situation if I develop bone pain.

I would save up xofigo for a situation when you develop bone pain which could be managed with strong pain medication.

[Seasid in reply to Seasid]

What is your PSA doubling time now?

[petrig in reply to Seasid]

Psa 0,4 in august 2024, 8,1 in march 2025(6 month control),Latest blood test two weeks ago. Dont know the results until doctor appointment 11. april.Ct -scanning in 7. april ...

[Seasid in reply to petrig]

Did you have any scan when your PSA was 8.1?

[Seasid in reply to Seasid]

The rationale behind this approach is compelling. Relying solely on rising PSA as a signal to stop treatment might lead to premature discontinuation of therapies that still offer benefits. Instead, waiting for more definitive evidence of progression—such as worsening imaging findings or clinical symptoms like increased pain—can help ensure that patients derive the maximum benefit from each drug.

That said, it's important to remember that every patient's situation is unique. While the evidence supports continuing treatment until clear progression is seen, clinicians also need to consider factors like the patient's overall health, potential side effects, and individual response to therapy. So, while I find the argument reasonable and supported by research, decisions should always be tailored to each patient's specific circumstances.

ChatGPT said

[Seasid in reply to Seasid]

Yes, I agree with the rationale presented in the studies and guidelines, **with some important nuances**. Here’s my perspective:

---

### **1. The Evidence Supports Continuing Treatment Beyond PSA Progression**

- **PSA is an imperfect biomarker**: While PSA is widely used, it does not always reflect true disease progression. Tumors can become heterogeneous or develop treatment-resistant clones that shed PSA without causing immediate clinical harm. Continuing therapy may still suppress other tumor subpopulations.

- **Clinical trial data**: Studies like the one you cited (e.g., abiraterone continued beyond PSA progression) show delayed radiographic progression and prolonged clinical benefit in many patients. This aligns with the idea that stopping too early risks losing control over the disease.

---

### **2. Becker’s Study Highlights a Real-World Problem**

- **Premature discontinuation**: The finding that PSA levels at treatment end often matched pre-treatment levels in VA hospitals suggests clinicians are stopping therapy at the first sign of PSA rise, rather than waiting for confirmed clinical/radiographic progression. This likely deprives patients of potential benefits.

- **Guideline-practice gap**: Academic centers often adhere to evidence-based protocols, but community or non-specialist settings may lack awareness or resources (e.g., frequent imaging) to monitor beyond PSA. This underscores the need for better education and systems to support guideline adherence.

---

### **3. Important Caveats and Nuances**

While I agree with the recommendation to avoid stopping solely for PSA rises, **exceptions exist**:

- **Rapid PSA surges**: A rise ≥50 ng/mL above nadir (per guidelines) or a doubling time <3 months may indicate aggressive biology, where continuing therapy could be futile or harmful.

- **Toxicity vs. benefit**: If a drug causes significant side effects (e.g., abiraterone’s mineralocorticoid toxicity, enzalutamide’s fatigue/falls), stopping earlier may improve quality of life, even if PSA is rising slowly.

- **Financial/access barriers**: Cost or insurance limitations might force discontinuation, though this is a systemic issue rather than a clinical one.

---

### **4. The Role of Precision Medicine**

- **Emerging tools**: Circulating tumor DNA (ctDNA), PSMA-PET imaging, and genomic profiling are improving our ability to distinguish indolent PSA rises from true progression. These tools may eventually refine when to stop/switch therapies.

- **Combination strategies**: Trials are exploring adding therapies (e.g., PARP inhibitors, radioligands) at PSA progression rather than stopping abiraterone/enzalutamide entirely. This could extend the utility of these drugs.

---

### **Final Take**

**I agree** that abiraterone/enzalutamide should generally continue until radiographic/clinical progression or a steep PSA surge, as supported by evidence. However, treatment decisions must balance:

- Individual patient goals (e.g., survival vs. quality of life),

- Toxicity tolerance,

- Access to advanced monitoring tools.

Clinicians should use PSA as *one piece of the puzzle*—not the sole determinant—and prioritize shared decision-making with patients.

DeepSeek said

[Seasid in reply to petrig]

I really hope that your PSA will become stable and maybe even drop.

[petrig in reply to Seasid]

Thank you.🙏