Anyone have Levator Ani Syndrome (LAS)?

Thanks for your reply. How long have you been on Adts and what are you taking now. Also why were you on adts.
Again thanks for the information. I didn’t know that. I was put on Orgovyx in the first place because they thought the radiation would’ve worked. I’ve been on it for 7 or 8 months. I’m 77 and have a lot of medical problems. Therefore no surgery in the plan.

I’ve been on ADT for almost 9 years. I am 77 just like you.

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.5 years later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 22 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped. I did not find out I was BRCA2 Until four years ago, That’s why it keeps coming back.

My other blood test says it’s coming back again, But so far it isn’t obvious.

They checked me for BRCA2 and I don’t have it. Would Pluvitco be an option for you. I read a little about it.
I really appreciate all of your knowledge it really opened my eyes to what I can expect.

Yes, Pluvicto would be an option for me if I had my PSA start to rise, But since I have BRCA2, I have a choice of using a PARP Inhibitor which can keep the PSA down for even more time. Then Pluvicto might be an option.

Some people have some major side effects from Pluvicto, most don’t. I have heard at least 5 people talk about their experience, In some cases they had to have more time between doses because of the side effects.

I saw a webinar where they discussed a person who lit up the Pet scan With metastasis from head to Legs. He had one Pluvicto Treatment and it almost cleared his pet scan, But his side effects were so bad that he could not take any more treatments

Be aware that it works really well for 33% of people OK for 33% of people and not at all for 33% of people.
If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant.

Getting a somatic, genetic test, uses your blood or tissue to find out whether or not any of those genetic issues has come up, They can occur, even though they are not part of your hereditary genetics.

Hi. I have been diagnosed with Levator Ani. it is debilitating. I haven't read one sucess story about being healed. does anyone have a success story about what helped them to get rid of this horrible syndrome?

@whatishappeningtome. The only positive outcome was described by a man in his 30’s who after repeated conservative failed treatment attempts (PT, nerve pain and muscle relaxant meds, sitz baths and even nerve block injections), finally received “complete” relief from Botox injections. I’m a 69 y/o male sufferer of LAS, diagnosed 6 months earlier but I suspect I’ve had it at least 4 years. Did the above treatment with little to no improvement. Will be discussing a second nerve block injection with Pain management doc tomorrow. I agree, LAS is a life destroying condition. The key is to never give up and have faith in god.

@jefftheperl - they don’t do Botox injections at least my colorectal specialist doesn’t. I’d have to do a little more research into where and who does Botox. Thanks for your post it’s very helpful and informative.