I just don't know...

[Miccoman]

As some here know, at the beginning of the year I had irradiation of my neck and upper back (cervical spine and upper thoracic spine). It was awful and I ended up in the emergency department for 3 days while they got my throat open enough for me to swallow. Horrible not to be able to swallow well for months. I still have lingering side effects with taste and saliva.

The RO insisted that it everything went according to protocol and she had never seen such results. She had been insisting it is long covid (SMH) and has said she is afraid to treat me further.

My MO promised to talk with her in preparation for my starting Pluvicto and get back to me.

In the meantime I had a new PSMA PET scan (last one was in Oct 2022).

Under findings it says (emphasis added): "METASTASES (known or numerous PSMA avid sclerotic ossious metastases throughout the visible axial and appendicular skeleton (SUV max 27), increased in number and intensity of uptake in comparison to the prior PET/CT from 10/5/2022. These involve multilevel vertebral bodies throughout the spine (most notable at C2, C3, C6, T3, T4, T5, L1, L2, L5, and the sacrum), sternum, bilateral proximal humeri and femurs, bilateral ribs, bilateral scapulae, bilateral clavicles and bilateral pubic bones including bilateral ilium, acetabulum, superior and inferior pubic rami. These lesions have increase in size and intensity of PSMA avidity. Additionally several of these lesions are new, electronically marked."

Under Impression it says (emphasis added): "History of high risk metastatic prostate cancer, status post prostatectomy and bilateral orchiectomy. Now with rising PSA.

1. No evidence of local recurrence in the surgical resection bed.

2. No suspicious PSMA avid lymphadenopathy.

3. Progression of patient's known ossious metastasis with interval development of multiple new PSMA avid sclerotic osseous metastases. Additionally the previously known sites of PSAM avid osseous metstasis have increased in size and intensity of PSMA uptake."

If I read that right, the radiation had no effect on the mets it was supposed to kill and the targeted mets have grown and are specifically noted as worse in the findings.

So WTF??? Did I go through all that for nothing?

[Tall_Allen]

Considering that all your metastases are in bones, is Xofigo a better choice? Have you discussed Xofigo rather than Pluvicto, perhaps with a combination?

prostatecancer.news/2021/02...

[Miccoman in reply to Tall_Allen]

Thanks, Tall_Allen, I really value your input.

MO says Pluvicto only choice when I asked last week.

Consult with Dr @ MSK said Pluvicto, albeit a number of months ago.

I am alone and so discouraged that there seems to be no doctors on my side, even my therapist is at a loss. I don't know if I can mount another fight for treatment...

[Mjex in reply to Miccoman]

Hang in there. We are in this together and stronger for it. You are not alone, even if you feel like it.

[Tall_Allen in reply to Miccoman]

If you're in NYC, may I suggest you get a second opinion from Scott Tagawa at Weill Cornell. He's got several clinical trials going for Ac225-J591/Lu177-J591 that may be particularly good for you, given the extent of bone involvement.

[Miccoman in reply to Tall_Allen]

Thanks, Tall_Allen, but I'm in Rochester, NY, and without resources to have care in NYC.

[garyjp9 in reply to Miccoman]

I am alone too. It can really suck at times like this. Feel free to PM me if you like. Also, you are not alone on here.

[j-o-h-n]

See Scott across the street and tell him he's been recommended by many and to fix you up.

Tell him you also worked for Maurice Greenberg many years ago.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 7/7/2023 6:22 PM DST