Connect
← Return to pT3b Prostate Cancer - where are you now post-op?
Discussion
pT3b Prostate Cancer - where are you now post-op?
Prostate Cancer | Last Active: Sep 21 6:58pm | Replies (34)Comment receiving replies
Jeff are all of those organizations something anyone can join or do you have to be at a certain stage of cancer? Also even though your first recurrence was not that long ago, it was a long time in prostate cancer development. What happened when you recurred? Were you on q3 PSA? What do you think would be different or you would do differently if you were at that point again today?
Replies to "Jeff are all of those organizations something anyone can join or do you have to be..."
Yes, I suspect that several of us are members of the Jeff Marchi fan club!
His nearly-constant presence here, with his calm, informed voice, is such a balm for us.
Connect
What I wrote, specifies exactly what was done when I recurred. The first time was about 12 years ago and I had radiation.. The second time I went on Lupron. The third time was when Lupron failed and I went on Zytiga. The 4th time I had a metastasis on my spine and had radiation and switched to Nubeqa.
Go to ancan.org and sign up. They have an active surveillance group, They have a low and intermediate group and they have an advanced group which is for those that have had a reoccurrence Or a very aggressive case to start with. You can attend any meeting you like. They have a schedule of when the meetings occur. You have to install GOTO meeting To attend those meetings. They also have a men speaking freely meeting twice a month, where people can talk about everything but treatment, If you have issues that affect your life that you want to talk to other people that have cancer About it is the place to go. There’s a veterans group even that helps veterans get better care.
Go to http://thereluctantbrotherhood.org/ and you can sign up with them. They have a meeting for all prostate cancer patients and another one for advanced prostate cancer patients.
The CSC meetings Require you be in California. Same with the UCSF meetings.
I forgot to mention that I attend a number of seminars given by PCRI, who’s meetings you can view on YouTube. There is incredible amount of information in those meetings. If you search YouTube, you will find more conferences that cover prostate cancer and different issues with prostate cancer.
If I had been diagnosed in the last three or four years, I Would’ve found out sooner that I have BRCA2 and I might’ve gone on a PARP inhibitor. If I had been diagnosed in the last couple of years, I might’ve started on ARSI Sooner since they now find that it can delay, castrate resistance.
That’s something I didn’t discuss. I became castrate resistant six years ago. The median survival after you become castrate resistant is two years. It would’ve been nice to delay that. Because my case was not really aggressive at first, it enabled me to be alive after six years. Besides that I can still Start a PARP Inhibitor if my PSA starts rising, Hopefully it will give me a couple more years. I then have chemo and Pluvicto As options after that. New discoveries are coming out pretty regularly, Hopefully one will come out soon that helps people that have had their PSA rise even though they are on ADT plus an ARSI.