Axumin results and next steps

Received results today from an Axumin PET scan last week. My PSA has been rising fairly steadily by 0.1 each month, DT x 6 mos, and started experiencing some possible symptoms (pain) so the MO ordered an Axumin. Results show two Mets in the left ischium. My PSA is only a 0.8 or maybe 0.9 but the MO says some PCa patients just don’t produce a lot of PSA. I’m thinking with a relatively low PSA and two bone Mets I might be one of those guys. Anyhow, I’ve been debating when to start ADT and Xandi or Zytiga. I have an appointment with the MO next Monday so given the DT, presence of bone Mets, and low PSA would anyone have a recommendation as to when I should start Tx? I’m thinking soon, if not very soon. Opinions welcomed!

My view is that guys usually start ADT way earlier than necessary following failed primary treatment. But in your case, with the doubling time, visible mets, and possible physical symptoms - I might seriously consider starting ADT sooner than later. It will interesting to see your MO’s view.

Good luck with whatever you choose to do!

Please forgive me for asking, but did you experience the pain prior to having the scan?

Maybe an important question I forgot ask: does the area of the pain line up with where the mets are located? If that’s the case, I think the evidence for early treatment would be strengthened.

btw, I like your MO. Mine has been similar in that he has acted as my guide for my treatment - as long as it falls within his view of prudence. I think a good doctor allows for significant input from an educated patient - which is probably how he is approaching your treatment.

Got an Axumin scan 2 months (at PSA of 3.3) ago that found 2 hot pelvic lymph nodes. Saw an RO and asked if he can zap those, still waiting for a decision, but started back on leuprolide chemo (Firmagon) 2 weeks back in the interum.

When you have less than 5 mets, a number of medical professionals are now calling that state "oligometastatic" and several studies indicate that you may still be "curable". Kinda cutting edge ATM, but something to consider. If they zap the mets, sometimes the bits of dead met protein floating around in your blood seems to alert your immune system and it goes to work on the remaining cancer. This is inferred by a major increase in the number of T cells in the blood stream and a cessation of PSA rise.

Since the first round (2 &1/2 years) of leuprolide killed off my testicles (leuprolide chemo side effect ), the loss of the last bit of testosterone hasn't really affected me this go-round. Body hair is all falling out, though, so the leuprolide has indeed shut down my hypothalamus and pituitary.

rcroller said...
....I'd much rather get zapped than start the ADT/Xandi route...

Amen to that...rcroller, and good luck.

Sorry to hear that. I know nothing about radiation(and a whole lot of other things too). If those lymph nodes were outside your radiation treatment previously what is it that precludes further radiation? Maybe get a 2nd opinion? When I had my surgery they also took out out lymph nodes. Is surgery an option? I don't know where you were treated but maybe 1 of the big centers would do something different. If not, I can tell you my ADTitude: I'd rather be alive and feel the side effects of ADT than the alternative.

Ok-guess I missed the bone mets. I have lots of those. My Lupron+Zytiga+Prednisone have done a great job for about 2 years now. Be sure to read up on all the possible side effects (if you want). Before I started with Lupron & Zytiga I went on a great diet and worked out like crazy(for me). I believe that helped minimize the fatigue and hot flashes. Good luck.

Yep AK123, looks familiar from your stats. Agree it’s frustrating, to say the least. I hope you have a good RO and MO on your team. My URO is useless. Anyhow, I’ll update after my MO appt on Monday. I’m guessing I’m close to pulling the trigger on treatment but still don’t want to go there. I hear drinking and poor diet are issues. Guilty, and not sure Im ready to change that, but that’s another thread. Best of luck to you whatever you decide.

RCR,
ADT isn't appealing. The thought of it was pretty dammed scary for me. On the other hand, if it wasn't available as a treatment, I know I would be wishing something was. The data say there is a good expectation that it will work well for 5 years, maybe more. That may not sound super exciting, but it might buy us time for further management developments.

FWIW, so far (9 months) the side-effects haven't been much of an issue for me.

Good luck going ahead.