I am 60 years old and have been treated for 8 years. I am in Canada and have used up all the SOC options available. PSA is 250 and have recently become anemic. My only options are trials or Lu-177. I tried to get Lu-177 through a trial but that didn't happen. Recently the Canadian government approved Lu-177 but it still hasn't made it available. I am worried now because my blood work is not great and I am showing signs of weakness.
What are you guys doing at this stage and is there a silver bullet out there? Trying to stay positive but its getting harder as I see my body wasting away.
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Islandboy2021
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Xtandi is not approved here if you failed Zytiga as I did. I tried to convince the oncologist to let me try Xtandi but he said it wasn’t approved and the research didn’t show improvement. The problem with this statement is that every man’s response to treatment is different and why wouldn’t you at least try. At this stage you have nothing to lose and everything to gain.
Agree - Time to change oncologist. I am not EXPERT. I can tell you one thing from my experience. Having oncologist whose job is 24x7 prostate cancer only can do certain type of decision
if you do not want to try Xtandi because certain data then why not adding "talzennar" and try again ?
The TALAPRO-2 results showed that TALZENNA plus XTANDI is the first and only PARP inhibitor in combination with an ARPI to significantly improve survival in patients with metastatic castration-resistant prostate cancer, regardless of mutation status,” said Roger Dansey, M.D., Chief Development Officer, Oncology, Pfizer. “Pfizer is dedicated to advancing scientific breakthroughs in genitourinary cancers, and these exciting TALAPRO-2 results further highlight our long-standing commitment to improving survival for men with prostate cancer.
After Zytega, my hubby tried xtandi but PSA doubled each month on it. He has done taxotere twice. Tried lu177 in 23/24, but it caused major bone met spread. He is now on Jevtana chemo every 21 days. When that fails to hold the PSA down, he will be referred to hospice. He started at age 64, now 72. Had surgery/radiation/taxotere/zytega/xtandi/more chemo/pluvicto/now Jevtana plus Eligard shots every 6 months
I don't know how helpful this is but DeepSeek said:
I’m truly sorry to hear about your situation, and I commend your strength in seeking options. Here’s a structured approach to consider, focusing on both immediate and longer-term strategies:
### 1. **Expedite Access to Lu-177 PSMA Therapy**
- **Compassionate Use/Special Access Programs (SAP):** In Canada, SAPs allow access to approved but unavailable drugs under specific circumstances. Ask your oncologist to apply for this through Health Canada’s SAP.
- **Provincial Advocacy:** Contact your provincial health ministry or cancer agency (e.g., BC Cancer, Cancer Care Ontario) to inquire about timelines for Lu-177 rollout. Escalate through patient advocacy groups (e.g., Prostate Cancer Canada Network) for support.
### 2. **Clinical Trials Beyond Lu-177**
- **PARP Inhibitors (e.g., olaparib, rucaparib):** These are effective if you have BRCA1/2 or other DNA repair mutations. Confirm genetic testing (tumor or germline) has been done.
- **PSMA-Targeted CAR-T or BiTE Therapies:** Trials like AMG 160 (BiTE) or CAR-T cells targeting PSMA are emerging options.
- **Other Radiopharmaceuticals:** Explore trials for Actinium-225 PSMA (more potent than Lu-177) or combinations with immunotherapy (e.g., pembrolizumab).
### 3. **Address Anemia and Weakness**
- **Anemia Management:**
- **Erythropoiesis-Stimulating Agents (ESAs):** Epoetin alfa/darbepoetin may help, though risks/benefits need discussion.
- **Iron Infusions/Transfusions:** If anemia is severe, short-term transfusions could stabilize you.
- **Physical and Nutritional Support:**
- **Palliative Care Referral:** Focuses on symptom control, fatigue, and quality of life.
- **Dietitian/Physical Therapy:** Counteract muscle wasting with tailored nutrition/exercise plans.
### 4. **Explore International Options**
- **Lu-177 Abroad:** Countries like Germany, Australia, or the U.S. offer PSMA therapy. Costs may be high, but some centers have expanded access programs. Organizations like MyMedTravel may assist with logistics.
### 5. **Second Opinions**
- **Canadian Expertise:** Seek referrals to major centers (e.g., Princess Margaret Cancer Centre, BC Cancer).
- **Global Consultations:** Consider virtual consults with specialists at institutions like MD Anderson or Johns Hopkins for trial/access insights.
### 6. **Supportive Care**
- **Palliative Care:** Focuses on pain, fatigue, and emotional health, improving daily function even while pursuing treatment.
- **Mental Health Support:** Counseling or support groups (e.g., Prostate Cancer Foundation community forums) can help maintain resilience.
### 7. **Advocacy and Urgency**
- **Escalate Delays:** Write to your MP or provincial health minister to highlight delays in Lu-177 access. Patient stories often catalyze policy action.
- **Crowdfunding:** If seeking treatment abroad, platforms like GoFundMe can help offset costs.
### Key Takeaways:
- **Lu-177 Access:** Push for SAP/compassionate use and provincial advocacy.
- **Symptom Management:** Integrate palliative care early to address anemia, weakness, and emotional strain.
Stay proactive with your care team, and lean on advocacy networks for logistical support. While there’s no definitive “silver bullet,” combining emerging therapies, symptom management, and relentless advocacy may open pathways. You’re not alone in this fight.
Thanks for sharing this information. This is very helpful. I have a appointment tomorrow with oncologist and I will be pushing for access to the Lu-177.
I believe there is a trial coming up for Actinium 225. This treatment looks promising and I would definitely give it a try.
I just wish to say that if your PSA is so high you could have a Guardant 360 liquid biopsy in order to find out about actionable genetic mutations and possibly joining a clinical trial. Maybe immunotherapy drug keytruda or just simply a clinical trial with the Astra Zeneca new less toxic parp inhibitors?
refer to my bio for my history. I was first diagnosed with psa 9000. In late 2016. I refused chemo and was started straight on ADT. Mets in all skeletal structure skull. And lymph nodes. Lymph resolved and psa dropped to below 0.05 for 7 years. In last 2 psa is rising and doubled in last 3 months. Onc told me to consider tablet chemo and reviews at next review Feb 24. I have been experimenting with intermittent fasting for last 2 years and lost 20kg, my bmi is in healthy range, blood works are all good. This has led me to low carb diet and work of Prof. Dr. Thomas Seyfried and his analysis on Metabolic disease. I think all prostate cancer should at least study his work and follow his dietary directions. Tall Allen thinks he is a quack. However, any move that improves our health by nutrition can not possibly harm. I am at end stage as far as conventional treatment is concerned and I am certainly starting to eat Lo carb/ keto diet.
I believe that TA said that the only chemotherapy proven to work for prostate cancer is docetaxel chemotherapy. I want to say that oral chemotherapy may only make you feel sick without a benefit on overall survival rate.
I asked my MO and he said that the Oral chemotherapy would make me sick. If you combine that with the information without proven benefits than the conclusion is don't do it. Nobody wants to feel sick if it will not help you with the cancer.
I'm not a doctor, but I can offer some context that might help clarify the situation. In the treatment of prostate cancer—especially in metastatic castration‐resistant prostate cancer (mCRPC)—docetaxel has been one of the few cytotoxic chemotherapy agents shown in multiple studies to improve overall survival. That’s likely what your TA was referring to.
It’s important to note, however, that there are effective treatments for prostate cancer that are taken orally. For example, drugs like abiraterone acetate and enzalutamide are oral medications that work by targeting the androgen pathway rather than acting as traditional chemotherapies. These agents have also been shown to improve overall survival in certain settings. They aren’t classified as “chemotherapy” in the classic sense, which might be why there’s some confusion.
When it comes to oral chemotherapy agents that have not demonstrated a survival benefit, your concern is understandable. If a treatment is likely to cause side effects without clear evidence that it will help control the cancer or extend survival, many patients and doctors might lean against using it. Your medical oncologist’s point that the oral agent could make you feel sick is one aspect of weighing its overall benefit versus its risks.
Ultimately, the decision about whether to use a particular treatment should be made after a careful discussion of your specific situation—including your cancer stage, overall health, treatment goals, and the side effect profiles of the available options—with your healthcare team. If the evidence for a specific oral chemotherapy agent doesn’t support a survival benefit (or improvement in quality of life), then avoiding unnecessary side effects is a reasonable conclusion.
If you’re ever in doubt or have more questions about the rationale for a particular treatment, don’t hesitate to ask your oncologist for more details about the evidence behind it. Clear communication with your healthcare providers is key to making the best decision for your situation.
Good luck to you later this month. I have been following Thomas Seyfried's work too and have changed my diet to carnivore. Often overlooked is the quality of life improvement of reducing carbs and losing weight. On youtube there's a Dr. Peavler who goes into deep dives on mechanisms of action of various drugs and supplements that are complementary to a metabolic approach.
I am Canadian as well. I wish you the best as you look for treatment. We often don’t have the options others on the forum do. Please keep us updated so I know what the government has allowed you to do. My thoughts are with you. I hope you and your oncologist find something that helps.
35 years ago, a friend flew to Europe for Hyperthermia treatments for his prostate cancer. Today he remains cancer free and still has his prostate. Only now are a few cancer centers recognizing Hyperthermia treatments for an effective modality. Since you live in Canada, I believe the Cleveland Clinic may be a viable option. Another one is in California. They seem to promote such treatment and I suspect they would help you.
I second this suggestion to go out-of-country for other options. Depending on your means you could take a loan against the equity of your home to pay for Pluvicto or other treatments through medical tourism.
I was in a similar position, having exhausted Brachytherapy, EBRT, chemo (Docetaxel + Carboplatin), and then my doctor treated me in 2023 with /Lu-177 — and my cancer appears to be in complete remission and my PSA is undetectable. It’s been just over a year since I finished my treatments. I’m still taking Lupron and Nubeqa and I get scans every quarter. I realize that it’s likely to come back, but this is buying me time while (hopefully) new treatments emerge. I would encourage you to investigate any way you can get Lu-177, even other foreign options such as Turkey.
The discussion revolves around the use of different PET/CT scans (PSMA, Choline, FDG) for monitoring prostate cancer, particularly in the context of availability in Australia. Here's a structured summary and insights:
### **1. Scan Types & Their Roles in Prostate Cancer**
- **PSMA PET/CT**:
Targets prostate-specific membrane antigen (PSMA), highly expressed in most prostate cancers. **Preferred** for staging, restaging, and detecting recurrence due to high sensitivity/specificity. Widely adopted in Australia.
- **Choline PET/CT**:
Detects choline metabolism in prostate cancer cells. Largely **replaced by PSMA** in regions where PSMA is available. **Not accessible in Australia**, as noted.
- **FDG PET/CT**:
Measures glucose metabolism. Less specific for prostate cancer (many tumors are FDG-avid, but indolent prostate cancer may not be). Useful for **aggressive/high-grade tumors** or if PSMA-negative. More widely available globally.
---
### **2. Key Considerations**
- **Availability in Australia**:
PSMA is standard; Choline is unavailable. FDG is accessible but not first-line for prostate cancer unless for specific scenarios (e.g., high-grade/metastatic disease).
- **FDG vs. Choline**:
- FDG may be comparable/better than Choline in detecting **aggressive lesions** (e.g., poorly differentiated tumors).
- PSMA generally outperforms both in most prostate cancer cases.
- **Scan Frequency (Every 3 Months)**:
Quarterly scans are **unusually frequent** outside clinical trials or exceptional cases. Typical intervals depend on disease stage, treatment response, and clinical guidelines. Over-imaging risks false positives/radiation exposure.
---
### **3. Recommendations**
- Discuss with your oncologist:
- Confirm whether FDG is appropriate for your case (e.g., if PSMA-negative or high-grade disease).
- Re-evaluate scan frequency to align with evidence-based guidelines.
- Explore alternatives (e.g., MRI, bone scans) if needed.
- **PSMA remains the gold standard** in Australia for prostate cancer imaging. FDG may complement it in select cases but is not a direct substitute for Choline.
I am saddened to read about your situation and wish you the best.
Can you recall ---- “Physician, heal thyself” is a proverb that appears in the Bible and has been used in literature since at least the 6th century B.C. It means that people should take care of themselves so they can better care for others.
I would suggest that you might simple search *AKA Dr. Hope* You can scroll to the bottom and click on IMMUNOTHERAPY for his story regarding *Physician, Heal Thyself*
I also live on B.C. and we have exchanged emails on several occasions. Like you I have been battling this damn disease for a very long time and running out of options. It will be twelve years in May. I was initially put on an ADT drug (Zoladex). That lasted for five years. Then I was offered an ARPI drug (Xtandi) as well as Zoladex. That worked for another five years. For the last two years I have been on a clinical trial at the B.C. Cancer Agency (SPLASH) investigating the use of Lutetium-177 pre-chemotherapy.
In your situation I would look at the trial investigating the radiopharmaceutical Actinium. It is sponsored by Bayer at the BCCA. If you are rejected and, if your health allows it, then look overseas. Germany, Australia, England, even South Africa and India have been doing radiopharmaceuticals for longer. In my opinion they are further ahead than we are in North America. Write me back privately if you are looking for a recommendation. I think you will find it is not as expensive as you think. Good Luck!
If you go to the BCCA (Vancouver) and look up clinical trials for metastatic prostate cancer you will see that two of the three cohorts for Actinium are for men who have never had Lutetium. Have a look!
They don’t have to be taken sequentially. My understanding of the Bayer Trillium trial is that there are three cohorts. Two of them are for men who have never had prior Lutetium and one is for men who have previously taken Lutetium. There is a second clinical trial run by Bayer and also involving Actinium. It too is recruiting although I am not quite sure what they are investigating. Let me know what the doctors at BCCA have to say. If my scans show increased activity and my PSA rises I too might be looking at Actinium as an alternative to chemotherapy.
There is a trial for Actinium now for guys who haven't had chemotherapy. This excludes me. There is another one with a long waiting list. Lutetium should be available in April some time. So I have to wait again. I am going to try a new androgen blocker in the mean time. This is a trial drug and doesn't have a name yet.
The reason I recommended Actinium is that I haven’t yet had chemotherapy and I just assumed that was your situation as well. You are an Island warrior, so keep battling! Keep me informed if you are accepted into a drug trial.
I am not an expert on foreign medical travel but a good friend of mine went to Germany. He tried to stay out of the big cities like Berlin and Munich. Tim opted instead to go to a medium sized city with a big regional hospital. After a good deal of research, he chose to go to the Department of Nuclear Medicine at Saarland University Medical Center in Homburg, Germany. Homburg is the capital of the Saar region of Germany. The chief medical doctor there is Dr. Samer Ezzidin. Tim came back raving about the care he received. Not wanting to reinvent the wheel, my wife and I followed his lead a few months later in 2019. Like Tim we were impressed at the cost, the care and the knowledge of the staff. The doctors all speak English as do many of the nurses. I never underwent the Lutetium infusions because my cancer was in remission at the time but I do recommend this place.
I also have a friend (airline pilot) who went to Delhi, India for Lutetium. He was treated royally everywhere he went. Other good options include England (Royal Marsden?), Australia, South Africa and most of Europe. Many developed countries are much further ahead in the use of radiopharmaceuticals like Lutetium and Actinium than North America. You might be surprised at the cost. Good Luck!
I’m in the US and completed six courses of Lu-177 with great results (85% drop in PSA) but am left with a PSA of 28 that will eventually rise. Aside from retrying Lynparza (BRCA 2 variant) and trying Cabazitaxel I’m going to be in the same boat as you. I plan to look to Europe to undergo additional radioligand therapy (e.g., Actnium-225). Look to Europe for Lu-177 at a more reasonable cost than the US.
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With Lu-177, quit Eligard & Abitaterone ??
Pluvicto / Lu-177 - Do it now or later?
PSMA treatment equal
Things don’t look good!!!
