Bone pain after Lutetium treatment

[ellyras]

Has anyone experienced bone "flair up" after Lutetium treatment? I had my first treatment 3 days ago and the pain is pretty bad. Just wondering it that's normal and how long it lasts.

[whatsinaname]

My first infusion (Lu-177) is scheduled for Tuesday (day after tomorrow).

I will let you know by next Sunday or earlier whether I am getting pain or not.

I really hope not. Because, that's what has kept my spirits up, thus far.

Hopefully your pain will lessen.

All the very best to you.

[ellyras in reply to whatsinaname]

Hope you don't get the pain -not everyone does, and it varies from infusion to infusion, -but it started almost immediately after the first infusion. Good luck!

[whatsinaname in reply to ellyras]

Thank you, ellyras.

[whatsinaname in reply to whatsinaname]

Two days after infusion of Lu-177, I began to get pain where ever I had mets. In the skull, collar bone, lung, spine, thighs and buttocks. The pain was bearable and a Dolo helped in removing the pain altogether.

Today is my 6th day after my first infusion of Lu-177 and I hardly get any pain any longer.

My theory is that the Lu-177 went for the mets, attacked them and that created the pain. Now, that the mets are no longer being attacked, I get no pain. Either the mets were eliminated or have re-grouped for the next round. Shall know for sure only after I do the PSMA PET-CT scan in about 4 months from now.

[GP24]

I have just read that the Lutetium treatment can reduce bone pain. Maybe the pain is the result of your existing tumor progression and not caused by the Lutetium treatment. This will not have caused a lot of regression in three days. With other words, I think the pain would have occured without the Lutetium treatment as well, just because your tumor progresses.

[Tall_Allen]

Are you currently on abiraterone? Taking a bone-preserving agent?

[ellyras in reply to Tall_Allen]

no just the Lutetium

[whatsinaname in reply to Tall_Allen]

I am currently on Abiraterone and taking a bone preserving injection Zolasta.

Dr Lele told me that Abiraterone works synergistically with Lu-177.

What is your opinion ?? Thanks very much for a reply

[Tall_Allen]

It's just my opinion, but the recent evidence (below) that Ra 223 combined with abiraterone increased fractures and deaths would make me hesitate to combine Lu-177 with abiraterone. Some oncologists believe that a bone-preserving agent may mitigate the deleterious effect of the combination:

thelancet.com/journals/lano...

[whatsinaname in reply to Tall_Allen]

Spoke to the doctor again and he told me not to worry at all about combining Abiraterone with Lu-177.

[Tall_Allen in reply to whatsinaname]

You are taking a bone preserving agent.

[whatsinaname in reply to Tall_Allen]

Possibly that's the reason.

But, I have read a report which says that Abiraterone combines well with Lu-177. I cannot find the link, unfortunately.

[Tall_Allen in reply to whatsinaname]

I know they haven't done a phase 3 study comparable to the abiraterone with Xofigo study. I can't think why it would be different.

[whatsinaname in reply to Tall_Allen]

Just assuming you are right, how long would the effects of Abiraterone stay in the system ??

Also, I am currently taking a monthly infusion of Zolasta 4 mg. Should I check with the doctor on increasing the dosage ??

Thanks very much for your help.

[Tall_Allen in reply to whatsinaname]

They just found that the combination of abiraterone with that radiopharmaceutical led to more fractures. Sequencing is OK, as far as I know. You might ask your oncologist about combining Zolasta with Celebrex.

ascopubs.org/doi/full/10.12...

[whatsinaname in reply to Tall_Allen]

Thanks, Tall_Allen.

[Jackpine]

Hi Ellyras,

After my first LU 177 injection my bone pain was significant along with fatigue for about one week. After that the pain decreased substantially.

For background my PSA has gone from 110 to >1 after 4 injections.

[ellyras in reply to Jackpine]

That's encouraging. Thrilled to hear about your PSA and wish you best of luck!

[The_Don5 in reply to Jackpine]

great result Jack well done. have mets reduced on scans?

[Jackpine in reply to The_Don5]

Yes Mets are resolving and no new Mets in 7 months

[The_Don5]

this is the big question 2nd line hormones with lutetium 177 is there no evidence?

[whatsinaname in reply to The_Don5]

The MO handling my case (not Dr. Lele) told me to STOP Abiraterone as long as I was taking the Lu-177 infusions. He also told me to stop taking the six monthly shot of Eligard due on the 12th of June. I am going to follow his advice but will also cross-check with my usual MO tomorrow.

[The_Don5 in reply to whatsinaname]

hi whatsinaname any clarification from MO on above. We're back on xtandi and have been for five days lu177 infusion now ten days ago. side effects with xtandi are terrible and didn't take long to kick in. I'd almost wished we'd followed the path of Lu-177 alone for the first month until next infusion. xtandi effects are bad its is a mind altering sedative in our experience.

[whatsinaname in reply to The_Don5]

Hi Don,

Yes, my regular MO agreed with my Lu-177 oncologist that Abiraterone can be avoided for the duration of the treatment. However, all MO's eventually agreed that Eligard should NOT be stopped otherwise an increase in T could cause me problems. So that's where I stand here in Bombay : No Abiraterone as long as I am on Lu-177 treatments, but Eligard to continue relentlessly.

My gene mapping tests from the US (Foundation One) have just come in and I am in the process of discussing this with my usual MO. One thing has been pointed out : Abiraterone will definitely work for me while Enzalutamide will definitely not work. Other strategies are also being looked into. We will formulate Plan B, C & even D if necessary in a short while.

Very sorry to hear about your Dad's painful experience with Xtandi. I would suggest you stop it for a while, probably for the duration of Lu-177. Your call.

Otherwise, I am in excellent health and spirits. Eating and drinking everything. Reading a lot and also watching IPL cricket ( a few matches to go).

All the very best to you and your Dad.

[The_Don5]

Yeah big time pain, but I think I may have to agree with GP on this one, could be tumour progression but someone else on here I think stated that the lutetium attaches to the mets and aggravates them also. We are thinking coming off xtandi the day before treatment hasn't helped the bone mets either. We are looking at a shot of localised Radiotherapy for hip and low back flare up prior to next lutetium treatment 27th May.

[The_Don5]

we're in for Radiotherapy today off the back of lutetium 10 days ago. hip and lower back .MO back here thinks it still could be flair up and that it could take between ten to 15 days to settle after lu-177. He's only basing that on experience of radium though and what he would expect with lutetium as he does not have lu-177 to administer or has never used it on patients.

[The_Don5]

We've also been put on a 5mg steroid dose for general wellbeing and vitality?