My dad mentioned that he’d like to come off enzalutamide because of always feeling tired and the doc has agreed and is now starting him on a course of Radium 223. The aim is to target 2 small bone mets and bring them under control. Apparently they are becoming more active so the enzalutamide hasn’t held them off. I wanted to check what people in this forum thought of this as I am concerned about him coming off enzalutamide but the doc doesn’t seem to be? His latest scans showed the 2 bone spots, prostate = ‘complete response’ lymph nodes, ‘complete response’. He has no symptoms other than anxiety (like me).
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The only consideration is that if he gets Xofigo now, he won't qualify for Pluvicto for 6 months after the last infusion. If he gets Pluvicto now, he can get Xofigo immediately afterward.
I would have thought so too so I’m trying to understand the reasoning, other than is xofigo better for smaller spots? Are they too small to target with radiation? The doc seemed to say that it would be a preventative measure before they became symptomatic
Well, my understanding is that Xofigo is only indicated when you have bone pain.
That is the main reason that I am saving money to have Xofigo. It is not cheap. My oncologist professor Richard Epstein said that Xofigo is the last one to be deployed as he considered it local therapy. He recommended to me (for my situation) only to use global (systemic) therapies.
Yes, Xofigo extends life 3 to 4 months, but if you deploy it to early than later new mets will pop up. Ok, you could in theory have 6 Xofigo infusions again, but in practice probably not. (I would not have money for that). Plus it has negative systemic side effects on your body.
I would not experiment on myself with early deployment without extensive bone pain. I would keep it for paliation. It is only a local therapy and don't have effects on the systemic cancer.
The worse thing about Xofigo is that it targets not specifically a cancer but could go everywhere where there are bone changes not specific only to the cancer and if you are unlucky your bones could get ripped apart from the radiation. Ok, you are on bone strengthening medication, but still Xofigo is a risk especially if you have other bone changes apart from the cancer.
Bottom line. It is against recommendation to use it before extensive bone pain develops. Think about it as only for paliation instead of taking heavy pain killer drugs.
I myself hope that I will not need it. It is only a local therapy and can't stop the cancer.
I was reading this forum, and somebody who was getting Xofigo said that four new bone mets popped up while he was on Xofigo. I don't know, i am not a doctor but the professors of oncology here in Sydney said that chemotherapy is for the cancer and that Xofigo is not fighting the cancer as a systemic disease. (Xofigo has only local effects).
Better ask for a second opinion and use chemotherapy (if you can). I didn't go through your profile properly so I don't know your specific situation.
I just finished the 6 month course of Radium 223 without issues the only side effect was mild nausea. I have extensive bone nets, and the oncologist was delighted with the results. Let me say here that every treatment is palliative, none are curative for advanced patients.
Why did you have Xofigo than? I always thought that Xofigo is for paliation? So you had to have additional radiation to the painful bone mets? Did you have this radiation before or after Xofigo? I am just trying to understand the role of Xofigo. Are you sure that your PSA dropped as a result of deployment of Xofigo? Did you receive any other treatment parallel to Xofigo? How many bone mets did you have?
you may find that occasionally a Met starts to press on a nerve and becomes incredibly painful. I’ve had this 3 times over the 12 year course of this disease. Each time a single session of targeted radiation reduced the Met enough to permanently alleviate the pain.
All of our treatments are palliative in the advanced stages.
i can understand your situation. I have 15 bone mets mainly in my spine.
I just want to understand at wich stage did you decide to get Xofigo? Xofigo is not a single season of targeted radiation?
Which scans did you use to pinpoint the pain and the spot to be radiated? MRI, CT or wich PET scan?
I have neurological symptoms after running. Please answer me as Xofigo is very expensive therefore I am interested how did you decide to deploy it? What was your PSA and which other therapies did you receive parallel to Xofigo except ADT?
If your PSA is above 5 or even better 10 and it is elevated because of the prostate cancer (and not only as a result of prostate inflammation or infection if you still have your prostate). Than ask for liquid biopsy and find out if your cancer has actionable mutations. You may be able to deploy Olaparib or Keytruda.
I believe that you could just half the dose of Enzalutamide if it is still effective. If not conciser chemotherapy if the cancer is growing rapidly.
I would only live Enzalutamide ones it stops working and only than I would pay 5000 A$ for a liquid biopsy. You have more chance getting mutations after Enzalutamide.
I wish you luck and don't jump into new treatment until enzalutamide is working for you. Ask for second opinion.
I believe that the least toxic therapy at the moment is Nubequa, but you may not be able to get a script for it.
It takes 4 weeks to get the results back from a liquid biopsy. Take that also into consideration. Therefore if your PSA is above 10 then you can do the liquid biopsy. Best to do it after Enzalutamide.
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