Lutetium-PRRT after Enzulatamide. Looking out for experiences of those who have undergone LU-Psma.

[Summm]

Hello Everyone.

Back to the crossroads again after enzulatmide failed. Though i am glad we still have some road to be on.

Enzulatamide ( after 9 cycles doce) couldnt bring PSA down after declining to 126 it again hit back to 256 in 4 months. Lesions increased in size and new bone lesions formed too. Lot of pain, weight loss wont leave him alone.

Zytiga is and was ruled out for him due to his pre existing heart condition.

Doctors plan for LU -Psma.

Appreciate if anyone undergoing the same can share experiences for the treatment. Do's and donts', precautions or any other pointers and the outcomes, so we can be more prepared.

Will it affect the HB ( he is thallasemic minor)?

How about its effects on heart function? any slight idea?

Thanks so much for your time reading and answering.

Much good health and good vibes to you all.

Thanks.

P.S Xofigo isnt available in India

[dogstar1]

Summm,

Hi. With the caveat that everyone's experiences may be quite different, here's what I can tell you about my husband's experience with Lu-177, post Enzalutamide.

The initial round of Enzalutamide worked quite well. When the PSA started climbing again, my husband tried Xofigo -- which also worked for almost a year. Then back on Enzalutamide. When that, again, stopped working, we decided to go for Acc-225 in Heidelberg.

We were there in September for the first cycle, which was a combination of Acc-225 and Lu-177. We are now headed back for the second cycle.

While his PSA has declined from a high of 270 to 132, he still is experiencing considerable back pain in the areas of the mets (thoracic vertebrae and ribs). Some nausea -- which leads to loss of appetite, which leads to fatigue (and so it goes). The other side effect is xerostomia. After the first couple of weeks that got somewhat better, though it's still very much present.

In reviewing his records, he had a similar experience with Xofigo. When he started he had considerable back pain and it took two+ months of Xofigo for that to subside. The fatigue was less than it is now.

With both treatments, his blood tests remained relatively normal. Platelets did decline a bit with Ra-223, but not to a dangerous level. IMHO Tall Allen said it best, that people who are less far along with the disease handle these treatments better than others.

No impact on heart function, but that has not been an issue for him.

Good luck with your decisions. Hope this information is helpful.

[Summm in reply to dogstar1]

Hi dogstar1

Thanks for sharing your experience and the useful info. Yes, definitely the output of a treatment varies with the person.

Unfortunately Xofigo isnt an option in India and will speak about Acc too with my dads doctor.

One good thing that i learnt is that Enzulatamide can be re tried at a later time again and might be helpful.

I hope your husbands pain and health gets better with the second round that you are headed for.

Good luck and a great health!!

Thanks again!

[boseley]

I had Lu177 3 weeks ago because Zytiga had failed and my PSA went up from 4 to 37 in about 5 months. My bone scan looked like a Xmas tree before Zytiga. After treatment

I had 10 days of a bit of tiredness fixed by an afternoon nap!!. No bone pain, minimal nausea controlled by snacking lightly, one or two bouts of dry mouth but barely worth mentioning. Have hurt my back twice in the garden but that is muscular as best I can assess. Due for blood tests next week so that will be informative!

The 80 year old man being treated at the same time as me had a 50% drop in PSA after his first treatment. He had no / minimal side effects.

[Summm in reply to boseley]

Hi Boseley

Thanks for writing down your bit. I am glad your side effects were minmal. Reassuring to know about the 80 YO's PSA drop too.

Hoping your backpain is better, you could consider mentioning it to your doctor on your next visit.

Please do share your blood tests outcomes.

Hoping your PSA drops significantly.

Sending healing thoughts your way.

Thanks again.

[AlanMeyer]

Summm,

There has been a lot of discussion of Lu-177 in this forum. If you enter "177" in the "Search HealthUnlocked" box on the upper right of the screen you see 209 hits, at least some of which are likely to be of interest to you.

Good luck.

Alan

[Summm in reply to AlanMeyer]

Thanks AlanMeyer.

I ve read through a few posts and have some of my answers.

Still looking out for its impact on LVEF though.

Ill search the keywords as you mentioned and re try.

Thanks and Best Wishes