PSA spike while on Xofigo

[BigTex3]

Good morning everyone. I completed Xofigo on Oct 29th. My PSA was .45 when we started. It slowly crept up the first 4 doses. Then it was 2.7 in SEP, 4.08 in OCT and now 7.76 in NOV. Do you think this is normal or that the Xtandi is failing. We are doing a PET in 2 weeks to see how the Xofigo worked on the bone METs. WBC, RBC, ANC, JGB AND. PLT all remain low but slightly rising each week. Most of the bone pain is gone. Other than the heels of my feet and my hands and fingers. I’ve cutout pain killlers and hopefully this is a good sign. Thoughts anyone.

[NotAlwaysSunshine]

Thinking of you and hoping that you have a good report from your PET. My husband's MO kept saying STOP looking at your PSA. You feel good and you look good - We just kept doing a big eye roll. We wanted that PSA down down down! Hope you have a Happy Thanksgiving! B

[BigTex3 in reply to NotAlwaysSunshine]

Thanks and same to you guys. I know the number needs to go down.

[AlanMeyer]

Hello BigTex3,

I'm thinking maybe there's a typo in your post. You used the name "Xtandi" at one point. Did you mean "Xofigo"? You might want to edit the post if so, or add a comment to it.

As I understand it, Xofigo was developed for the purpose of reducing bone pain, not reducing cancer. It turned out however that men whose cancer was mainly in the bones were living longer with Xofigo than was expected. The radio

One possible explanation for your rising PSA and falling pain is that the Xofigo is working on the cancer in the bones but you also have cancer in soft tissue (i.e., not bones) that is continuing to grow. If so, scans and tests may find it. I suggest you talk to your oncologist about that to be sure that he's looking for cancer outside the bones as well as in them. It may be time to start a different therapy.

Best of luck.

Alan

[BigTex3 in reply to AlanMeyer]

Alan thanks for replying. I didn’t have any soft tissue on my PET prior to starting Xofigo. I have continued to take Xtandi in conjunction with the. 6 doses of Xofigo. That’s why I had mentioned both.

[Tall_Allen]

Yes, your cancer may be becoming resistant to Xtandi. When your blood work recovers, docetaxel may be a good choice, perhaps combined with Provenge.

Xofigo doesn't markedly decrease PSA - men using it just live longer and have less pain. Did your bone alkaline phosphatase decrease?

[BigTex3 in reply to Tall_Allen]

Thanks for your reply TA yes the ALP is down to 60.

[Nickhmcg]

HEY Big tex3, how are u doing? Just checking how ur Psa numbers are looking now did they decrease after you finsihed Xofigo treatment?

[BigTex3 in reply to Nickhmcg]

Good morning they have not gone down. In the last 3 months the PSA has gone from 4 to 7.7 to 12.7 I see my MO tomorrow. It seems as though Xtandi has failed. Time to figure out the next step. God is good and we can just continue to trust his plan.

[Nickhmcg in reply to BigTex3]

Good morning BigTex3, can I ask how your meeting went regarding next step? Just wondering if my Dad will be in similar positive do they advise a treatment break following Xofigo or are there options.Many thanks

[BigTex3 in reply to Nickhmcg]

Good morning. My MO changed me from Xtandi to Erleada. I’m not sure how it’s working yet over only taken it for just over a week. The first 7 days were almost unbearable due to the joint and bone pain. He thought it was an androgen surge and I believe he was correct. It’s been much better the last few days. I have blood work next week so that will let us know. Happy New Year.

[Nickhmcg in reply to BigTex3]

Thanks so much for letting me know and I'm glad it's settled down, fingers crossed ur numbers are reduced and it's working for you 🤞Do u need to have Zometa With Erleada?

Dads fatigue is quite bad at the moment, his hemoglobin is around 8 so he is exhausted, the pain in fingers and feet isn't good either and the Cole is effecting him. He described himself yesterday as feeling weak as a kitten (last Xofigo was Dec 23rd) psa gone up but scans stable. I'm worried he won't be able to. Tolerate the zometa due this Friday if he is feeling so low and achey now. He tends to get walloped by the zometa of he not on top form.

[BigTex3]

I’ll definitely pray for him. I am taking Zometa every month. I did struggle with it when I first started. Now it really doesn’t have a noticeable effect on me. How is his WBC and platelets. Mine are coming back up now after having the last Xofigo at the end of October. Also is he eating and getting enough protein?

[Nickhmcg in reply to BigTex3]

I had to get him to go in for bloods today he is just so weak. His hemoglobin is 8 and platelets 55 (97 on December 21st) so he is going to get a unit of blood tomorrow. I'm praying this helps relieve some of his symtoms, essentially the fatigue. He is having more bone pain but my understanding is that the Xofigo is cumulative so after his last session on the 23rd of December he is weaker than previous sessions so will 'feel' the bone pain more - to try and think of it as the Xofigo working and stay in top of all meds including Breakthrough.He gets very emotional which he also HATES I'm trying to keep him positive, his scan results showed stable disease, some areas of healing, nothing new. So focus on that.

To be honest id rather that they told him "after the last Xofigo infusion u will be fit for nothing for 5 weeks so full ur meds tray, get comfy on the couch and eat as much as possible". I think trying to do things and then feeling awful makes him worse.

His diet is fairly good, he would be quite a clean eater but getting Carbs into him is tough going, loves fish, eats small and often now. As much as he can. I stocked up on ensure drinks for him to try and take every day.

[BigTex3 in reply to Nickhmcg]

Hopefully the transfusion will help. My scans were definitely better after completing the Xofigo. I wish I could say that the bone pain goes away but it does get better. The fatigue can be tough and this disease impacts all of us differently. I do know that my blood counts improved each week after completing the last treatment. We will continue to pray for you all. I know it’s not easy for your dad or your family seeing him struggle with the disease.