Metastasized to my bones

[Niko10]

If your cancer is metastatic to your bones, but your PSA <0.1, does that mean my bone cancer tumors are not spreading? Thanks guys!

[Tall_Allen]

It means your ADT+Zytiga is preventing growth and spreading for now. Great response!

[Niko10 in reply to Tall_Allen]

Thank you so much, Allen. That is great news.

[pjd55d]

Hi

for what it may be worth - here is my experience with similar symptoms

they found my prostate cancer in Feb 2017 because of an MRI - they found it on the bones first - and then found the source in the prostate

I have been on Lupron since. then. The lesions on the bones have not only stopped growing - they have shrunk. I have had 3 bones scans - am due for another this Tuesday. every one of them is better than the last.

It took a while but as of a year ago my PSA shows undetectable - it was 340 at diagnosis and then it floated down over the first 2 years lingering in low single digits and then in the in the .0 something for awhile.

When it was in the low readings the Dr was pleased - so I was too. Now even moreso - so the ADT worked for me - and in spite of the side effects - ugh - I am glad to be alive.

Best to you - I looks like you are on the right path

P

[Niko10 in reply to pjd55d]

Dear P, thank you so much for your help. Very reassuring. Any idea how long the Lupron will last? Mine has been 2 years so far, on Lupron and Zytiga. Thank you, Niko

[Miccoman in reply to Niko10]

Hi Niko,

I, too, was diagnosed with stage 4 PC with bone metastases at the start, in 2014 so I am 6 years in and, aside from the terminal cancer, quite healthy -- well, I'm 71 tomorrow so I have arthritis and some osteoporosis, but I'm far from incapacitated.

I was started on Bicalutamide + Lupron depot 22.5 every 90 days. That lasted 2 years, then I switched to Xtandi and Lupron, in 2016.

My PSA has never gone below 0.1 and it is currently on a slow but steady rise (it was .85 in March).

I have 2 oncologists, a local one and one at Moffitt Cancer Center in Tampa. Both agree that I will be on Lupron for the rest of my life (unless I have an orchiectomy -- an option I turned down at the beginning with the poor prognosis at that time).

At this point we (my oncologists and I) anticipate going to Provenge immunotherapy when my PSA gets around 2 and then go on Zytiga. I think that will be sometime next year, given the 18 month trend line on my PSA (I keep a spreadsheet of all my labs and chart them so I understand what's happening).

Docs expect me to live another 10 to 15 years, most of them with pretty much the same quality of life as I have now. Or better if there's a treatment breakthrough (I sure could do without the hot flashes!).

[pjd55d in reply to Niko10]

Well - in agreement with Miccoman - the Lupron will be something I live with for the rest of my life -

I am almost 72 and every time I cross something off the bucket list I end up adding 2 or 3 more things . Right now I am very frustrated because of Covid 19 - at this time of the year I usually am lining up travel ( 4 trips last year. ) I do have my 75th birthday party planned - same place as the 70th - same people have already been invited .

I do remember - back in the 90s being quite sure I would not see 50 because of HIV - was wrong about that.

I did the Provenge in Oct 2018 and I think it helped keep me going. Orchiectomy has not been discussed and since it has metastasized is probably not an option.

I also believe that there are lots of smart young people out there being creative and may just live long enough to receive it.

It's an attitude - and I believe - not too bad a one. - General live view: Fuck You Mr Cancer.

Blessings to you all

P