Living with Prostate Cancer: Meet others & introduce yourself

Thankyou Coleen, you are great.

Hi Colleen, and everyone - I am Rick - had a prostate and nerves removed 8 years ago, 0.06 after surgery.
Dec 22 PSA 0.12 - when looking at my labs - I noticed Alkaline Phosphatase had also gone up every couple of
months. (from 102 feb 22 up to 138 feb 23. I did't notice anyone mentioning Alkaline Phosphatase. Maybe you could explain the commection.

thanks

My name is Jay and in 2008 I had a radical prostectormy 6 weeks after the diagnosis. Due to my enlarged prostate they could not do robotic. Due to the fact that they had to stretch my urinary tract to re-attach it to the bladder I have had consistent incontenence issues since then. In 2010 the surgeon tried to do a male sling but he tore the surgical site of the initial reconnection to the bladder an for 6 months I had to do numerous self catherizations and did not want to risk any addition surgery. Then in 2011 my PSA began to rise from >.05 to ,2 and I underwent 40 radiation treatments which dropped my PSA back down to >.05 until about 1917 when it began to rise again and I had a total body scan which did not show any detectable cancer cells. We continued to follow a very slow increase every 3-6 months and in November 2021 we did a PetScan which again failed to show any detectable sites. In February 2022 my PSA was .9 and a repeat PSA in November 2022 showed an increase to 1.9 and I was sent for another PETScan that this time showed 1 cm sites on the T4 verterbrae and the 2nd rib and a .2 X 1 cm sport in my R upper lung lobe. A lung biopsy was ordered by the radiologist and it confirmed a prostate cancer in my lung. I met with the radiologist and he worked up a plan for 3 SBRT treatments for the three sides, then at an appt with the Urologist the same day, I was given my first 6 month injection of Eligard. I was then referred to a hematologist-oncologist who has informed me that he favors adding Apalutamide.
to the radiation and Eligard. Is this standard protocol that others have had.? He said that beginning in 2018 experts agreed that apalutamide addition was very benificial in preventing the development of new cancer cells.

I am in a clinical trial at UCLA for aggressive and advanced prostate cancer. I had prostate surgery and 13 months of ADT and Erleada ( which is the Jansen apulutamide medication). My reading about this medication is that it extends the time of cancer progression on an average of 24 months over just ADT medication. The side effects were present but not too bad. Good luck to you and all in this support group

Back on Zolodex and now Xtandi added L2 lumbar radiated last year

Thank you for your input. How did your insurances cover the Erleada? The 15K a month for it is scary. they I had my first of three radiations today and the radiologist said he is very confident that he will kill the three small spots I now have and that the Eligard and the Erleada is expected to do a good job in controlling future growth....but at some point probably another drug will be needed to replace the Erleada. Does that sound reasonable to all of you.

That does sound like a reasonable plan, good luck with it.
I was kept on the Erleada for 12 months, which might be customary. I had prostate surgery in the 6th month. In the last month I had rashes on my chest and shoulders and if I had complained about that they probably would have stopped the Erleada in the 11th month and kicked me out of the Jansen clinical trial. I wanted to stay in the clinical trial as long as I could. Jansen paid for all of my cancer treatment for the last 18 months due to my being in the clinical trial. The numerous bone scans, pet scans, chest scans, monthly visits and blood test etc. And my treatment was treated as a top priority at UCLA and I was placed at the front of the line. My young surgeon at UCLA got me in the clinical trial, convinced me to take it and I was a good listener to him. The clinical trial should continue for another 18 months for a total of 36 mo Then my medicare supplement should cover most of the cost (but not all cost). 18 months ago when I was first diagnosed my prognosis was 4-5 years, after I finished the 13 months of meds and surgery the department head said that I should be good for 5-7 more years. At 75, I am hopeful for as many good, pain free years that I can get. I hope the same for you

I am also 75 and thank you for letting me know about what they shared with you.

My oncologist (who I met for the first time by referral ) did not mention any clinical studies going on at our facility (and seemed to indicate that I would not fit into the protocol for a clinical study) and I asked about studies and if the treatment would be any different if I was to go to Sloan Kettering , which of course is a major cancer center. He said that the treatment would be the same because our hospital is tied in with Sloan and cases are shared so protocols are the same. He said they have been using the Janssen drug since 2018 "when experience showed much greater results with the combination with Eligard" So for 4 years that has been their protocol of using both.
Thank you again for your input. Let's keep talking....I see him on March 7 to get put on it I guess. He was working with my Medicare and supplemental to get coverage I think from what he said.

Things could have been different for me as UCLA hospital is a teaching hospital and all of my doctors are also professors at UCLA. My doctor brought about 10 med students to my hospital bed to view old tummy and my pecker and catheter. Modesty is a thing of the past. I did not
mind but it was a first such display for me.

HA HA HA .....YES Modesty is no longer important. I have to use a Cunningham Clamp to prevent leaking since as I think I posted, when they tried to do the male sling, they damaged the lower sphincer of my bladder so it no longer full closes unless I am laying down....so I have to use the penile clamp to prevent leaking when I am up and around.. Well we do what we have to do I guess.