Just started my treatment for my condition last Thursday.
Was given Degarelix and Zometa.
The Apalutamide pills were due today by FedEx but was contacted by my oncologist to wait before taking as she wants to discuss a clinical trial with me.
In opinions out there, are clinical trials a Good or Bad thing? Going to have the discussion with my team in the next day or so and wanted some inputs from others out there.
Thanks, and have a good day.
Hi Parker! Welcome. I've been participating here for two and a half years and not doing too badly myself. Lots of good information here and helpful and kindly people.
May I ask some questions please?
1. JURISDICTION - What jurisdiction are you in?
2. EXTENT OF METS - How widespread are your bone metastases? (Mine are in my spine, but asleep 🙂)
3. BONE MEDS ALREADY? - You are on a bone-strengthening drug already - did you have a bone density scan? This would show whether you have normal density for someone at your age (almost my age too) or not.
4. A GOOD START - Between the Degarelix (I'm on this, it's also known as Firmagon) and the Apalutamide, you are or will be soon on what is called "doublet therapy". The two drugs work together.
5. CLINICAL TRIAL? I'm curious as to why if you were just starting out on your prostate cancer journey - may it be a long one - why you're already exploring clinical trials? From your brief bio you seem to be "de novo" - in other words you haven't had any therapy so far and everything you're going to be treated with now is new. There are already well established, advanced protocols for people in your exact situation, and under which there are very good results. (Bearing in mind that we don't yet have therapies that turn metastatic prostate cancer into a "chronic" disease.) These newer protocols are based on enormous high quality randomized control trials (RCTs).
6. EXERCISE - There are lots of resources on this site but it's worth noting that research supports this and everybody here emphasizes this, which is the importance of exercise. This is not only for quality of life but apparently also it even helps fight against prostate cancer. Another benefit of exercise is helping to maintain bone density in the situation where one is doing drug therapies for prostate cancer.
7. DIFFERENT INTERVENTIONS - From what you have reported, I noticed you didn't mention radiation or surgery. Coincidentally this is also my own situation. I have only had drug therapies (and I include in that chemo, which was fine and helpful).
8. GENETIC TESTING - just curious if your doctor specified a genetic test for your cancer?
I recall two and a half years ago the surprise of having a metastatic prostate cancer diagnosis. And the information overload at the beginning. Even though my diagnosis was later than it should have been, I was fortunate to have a good oncologist. From reading since then, my understanding is that the idea of what should be the best therapies for someone who is newly diagnosed with metastatic prostate cancer are quite uneven across jurisdictions and geographies. If you have the energy it's worth exploring where the consensus derived from these big clinical trials is going.
A big success for you as you figure out the beginning of this situation!
In Dalla TX. Bone Met confined to spine as verified through a MRI and other scans while hospitalized. Genetic testing was done already. No radiation for now but proton will be an option. Surgery is totally out as recommended by the Urologist and the MO. Too risky due to having just had a heart attack and stint placed. The MO said in her message that it looked as though might be an excellent candidate for the clinical trial and why the stall on the pills I just got today until a decision is made by the team. Bone meds are a precaution as the spine is a fragile area that can collapse easily when anyone has it located in the spine.
Just heard from the MO and she said they are screening for a possible trial candidate. The only thing that could disqualify is the heart attack back in June but not certain. The drug being trialed is a replacement or sister med to the Apalutamide which has been well tolerated so far and works faster and better at the cancer than the Apalutamide. If not qualified, will start the Apalutamide to go along with the other two meds being given.
What's the trial?
Right now, have no clue but told not to take the Apalutamide until I talk with my team.
Keep circling the airport....wait for landing instructions...
Good Luck, Good Health and Good Humor.
j-o-h-n
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