After being on Apalutamide, Lupron, & Xgeva, since April of 2022, & PSA drop from 7.3 (extensive bone mets.) & a drop to 0.1 (for 2 mons.), PSA rose to 0.6 over 3 mon. w/o lab work because doing so well. So, don't know exactly when it started to rise but the rate of increase is geometric!
MO wanted PSMA PET scan to see what's going on & possible treatment change. Had on 1/17 & following results, in brief:
The majority of the lesions seen on 4/22 exam (just before I started Apalutamide, Lupron) have resolved or markedly diminished in uptake. However, there are several new foci of uptake. Overall, in conjunction with the PSA curve, this likely reflects interval beneficial treatment response after 4/22 exam and now developingrelapse/treatment insufficiency.
MO hinted already at Chemo next in my visit with the 0.6 results. He would like to go Pluvicto, because better than Chemo & available in St. Louis region (I live just West) at 2 locations but must fail Chemo first per SOC!
Brief history: See bio for more:
DX & RALP 2017 (Stage IV pT3b, pN1) GS 9 , started Lupron 2017, IMRT/IGRT 2018.
Stopped Lupron after 2.5 yrs.
11/21 PSA 0.4, (1 lesion, Oligometastatic). Cyberknifed.
4/22 PSA 7.3. Started Apalutamide, Lupron & Xgeva. And here I am. See MO 2/1/23.
Any thoughts, please, Warriors?
What next after chemo?
What next after chemo, neuroendocrine cancer
what will be next for me
What next?
I am just curious. Why didn't you have ADT parallel to cyberknife?
You also missed the opportunity for early chemotherapy after. I don't know but it is very sad that you already have to think about pluvicto. Do you have a good MO? That would my recommendation. Are you happy with the institution? Can you communicate well with your team? Do you have a team? Can you get a second opinion from a center of excellence?
Only had 1 lesion that showed up at 0.4 & he thought it was Oligometastatic & maybe curable. Hind sight is 20/20. Looking back, I should never have gone off of Lupron, at all. I have not met with him yet & don't know his next step for sure. He did his residency with Washington U., in St. Louis, which is considered the Harvard of the Midwest. He has been involved in trials, also, and is following trials of Pluvicto, at St. Louis U. Hospital. I live just West of St. Louis. Lastly, my wife is a Dietitian (retired) & worked with him & did nutritional counseling for him.
Can you ask for second opinion or to change MO? Even better find a good team so do you don't rely on one person.
Yes, I have a team of UR, RO & MO, who have followed me for nearly 6 years.
I will wait until I meet with him on 2/1 & see his prognosis & then consider 2nd opinions.
Can you already inform yourself about how and where to ask for second opinion? Could you do it from a center of excellence? Or some high profile doctors? Maybe Sartor or Dana Farber etc. I don't know where is the best and closest to you? It is always good to know your options in advance. I am in Australia and I already know where would be a best to ask for second opinion. It is not a crime, actually it is a good practice. I wanted to protect myself with vaccine against herpes zoster and my GP wasn't sure than I just went to another GP in order to protect myself in a timely manner.
Yes, we have at least 2 in the St. Louis area, Barnes-Jewish (BJC) and Washington University. My MO is the Research Director for SSM Health Cancer Care and has served as the Principal Investigator for numerous clinical trials. He has been appointed an adjunct faculty position at Saint Louis University and is a Regional Research Director for the Saint Louis University/SSM Cancer Care Research Alliance which allows patients access to clinical trials from the Southwest Oncology Group (SWOG). SWOG is the largest cancer clinical trials cooperative group in the United States
He is sending his Pluvicto patients to BJC until he gets his own facility, which may be soon.
Sounds good.
Still you can get a second opinion for your piece of mind. (Especially if your cancer accelerates,) why did you miss the early chemo? Pluvicto only add 4 months to your life, it is potentially very toxic and under certain condition could kill you if the PSMA negative cancer take over. Be very careful with your decision. I would ask questions about what is best for me. Good luck.
Nothing wrong with that. I hope he has enough time on you as he is doing lots of other jobs.
Early on my PSA only went to 0.4 and showed only lesion, on the T-4, with PET, MRI & CT scans and the hope was it could be Cyberkniffed, which it was successfully. But then after having been off of Lupron for 1.5 yrs. my T went from the 200,s to the 300s and may have caused the relapse. He has had great success with Apalutamide, with 20 other patients with only "fatigue" as the SE and being 74, we decided to try it. Hind sight is 20/20, of course.
Thanks for your concern and advice and I will keep everyone posted on my progress.