30 months with PCA - experiences with ADT, Docetaxel, Xtandi / Nubeqa, Provenge and experimental immunotherapy trial.

[Namork]

Hi, I posted for the first time on this forum after my father (59) was diagnosed with stage IV prostate cancer in November of 2019.

I want to share our progress in this fight so far so that it can be added to the repository and used by others down the line to make informed decisions about treatment options.

The initial diagnosis was made with a PSA of 32, Gleason 8, and mets in local lymph nodes as well as in the bones including the cervix, spine, and ribs.

We had enrolled him in a trial which started in early Jan 2020 for SoC + immunotherapy in the form of Cemiplimab with MO of the time Dr. Drake at NY Presbyterian. SoC was ADT and chemo (Docetaxel).

His PSA started to drop after starting ADT and completing a round of chemo along with Cemiplimab. By August 2020 his PSA had dropped and stabilized at 2. Unfortunately during this time we found out that Cemiplimab fried his thyroid and he was diagnosed with hypothyroidism which is treatable but is likely contributing to a number of QoL side effects to this day. We had to drop out of the trial and stop Cemiplimab earlier than designed.

His PSA started to rise again in November 2020, after only a few months of stability. It increased from 2 > 4 > 6 before our new MO (Dr. Drake left the practice) Dr. Stein suggested that we start him on Xtandi (Enzalutamide) in January. By then we already had a few months of rising PSA so I had been bringing up other options to try and supplement Xtandi with when we finally made the call to begin. Among those included adjuvant radiation therapy (we lobbied and convinced a radiologist to go along with this) and Provenge (sipuleucel-T) as yet another immunotherapy option.

We ended up going with Provenge then Xtandi with radiation as a "wait and see" option after being advised by both the doctors that we shouldn't get ahead of ourselves. Still, I ended up convincing the MO to start Provenge BEFORE Xtandi instead of waiting until it fails (good amount of evidence for the benefit of doing this).

Unfortunately, shortly after starting Xtandi he landed in the hospital with full body rash and high grade fever which did not let up for 4 or 5 days. To this day nobody can really tell us what caused this type of reaction but it was decided that he should not risk continuing with Xtandi. As an alternative the MO instead put him on NUBEQA (darolutamide). Thankfully he did not have a reaction to this medication and his PSA had an almost immediate response.

I am timidly happy to report that as of March 2021 (over a year since starting Nubeqa) his PSA has been undetectable. Overall there are no significant side effects to Nubeqa but he does have moderate back and bone pain as well as a laundry list of other small QoL issues like fatigue, ailing sight, etc. He transitioned from pre-diabetic to type II diabetic as of last year which is mostly attributed to his cancer treatments. It's hard to pinpoint his ailments to anything specific because they're all probably contributing in one way or another.

It has not been easy, and it could have been better. I am truly thankful that it is not worse and that I still have my dad. I don't know when the runway will end with Nubeqa, I try not to think about it but I carry it with me every day.

Lesson: Right out of the gate we decided that we want to be as aggressive as possible in our treatment approach. At the time we figured that dad was still relatively young and healthy at 57 so we should throw the kitchen sink at him to give him the best long term odds. Reflecting back at this decision with hindsight I can see that a lot of it was driven by my own fear and desperation after finding out the survivability statistics of SoC for PCA. Same thing happened again after his ADT failed not even a year into treatment and I again pushed the most aggressive possible options. When Nubeqa fails, I'm sure I'll be pushing for trials on top of SoC again. The gamble with the first trial may have flopped, but I believe doing Provenge early has been beneficial.

Note of thanks;

What seems like a life time ago now, my family was hurled into a new and frightening reality as we scrambled to find the best possible institutions, with the best possible doctors, so that we are provided with the best possible care - all with the hope for best possible outcome..

It's hard to tell where we landed with those hopes and expectations but one thing that I know for sure is that I managed to find the best possible support community in you lot. Unfortunately, yet fortunately this community exists through a common cause (f*ck cancer) but the support and information flow amongst these walls can often be a beacon of light to those in despair - I know it was for me. This forum is a trove for high fidelity information and research; I remember scouring your posts into the early hours of many mornings soon after the diagnosis so that we can make quick and informed decisions on the treatment options with our doctors (who were also put on our radar through this forum).

Besides just the pragmatic value of treatment and research discussions, you have also shared inspirational stories of triumph and hope.. but also those of heartbreak - many times I have cried with you.

I thank you for your shared stories and experiences, I sincerely wish the best to all of you.

[Schwah]

What an incredible post. Full of despair and hope and love all st the same time. I think you made a good decision on early Provenge. I spent a lot of time researching Provenge. What I learned was that when you break down the clinical trial, you find that the earlier in the disease that Provenge was used, the more impact it had. Based upon that information I chose to use Provenge while still hormone sensitive. It was a lot of $$ out of pocket but I do not regret the decision and your decision was well thought out. Good luck going forward and keep us updated. I agree that this site is a Godsend.

Schwah

[Namork in reply to Schwah]

Thank you. Indeed the research pointed to earlier = better with Provenge but I don't remember coming across anything as early as still in the castrate sensitive stages! Kudos to you for informing yourself and taking action as early as you did.

In terms of $$, it's the same with us now ($100k+) which came as a shock because we were told that the treatment was precleared by our insurance. Still working to resolve this with the hospital and insurance co. but it's a significant burden and really a shame that this therapy is not covered more broadly.

Keep up the good fight, Schwan.

[NickJoy]

Your post completely reflects what I feel about this community. Thank you and best of luck with everything.

[Tall_Allen]

Great advocacy! I also think that Provenge is underutilized as a combination therapy. The rash may have occurred as an autoimmune abreaction, however.

[Namork in reply to Tall_Allen]

Thank you. Provenge was definitely considered by the doctors and specialists when he was in the hospital (we made sure to take him to Presbyterian where he was getting care for the cancer). It's a possibility but at the time I think he was already two/three weeks removed from his last Provenge infusion.

He started Metformin and Xtandi together just a couple of days prior to his reaction so the consensus was that it must be from one of them instead. (Metformin for diabetes not as a pseudo cancer treatment).

He was in a critical state with his fever peaking out at 105 a couple of times so all medication was stopped until he recovered. It was then decided that we cannot risk a similar reaction again so both drugs were replaced.

This episode was partially responsible for us in dropping our pursuit of ART because we did not want to put him through any more unnecessary suffering. It was later tabled indefinitely because of his already great response to Provenge + Nubeqa.

I hope that this combination will continue working for many years but I am discouraged by how quickly he failed ADT which I know carries implications into how long this stint will last.

[CAMPSOUPS in reply to Namork]

(Metformin for diabetes not as a pseudo cancer treatment).

I like you even more lol.

[CAMPSOUPS]

Wow thank you. What you seek here is what is so important to many of us (real treatment) along with the comradery. This is what I wish for more of here.

You have and continue to do so well for your dad. Way to go!

[grahaminator63]

Thank you Namork for your inspiring and thoughtful account of your dad's journey through this disease. We all cheer him on and expect great outcomes with your current and future treatments. He is blessed to have you as a passionate advocate for his treatment team and plan. God bless you!

[dhccpa]

Great report!

[j-o-h-n]

Awwwwwwwwwwwwwwww Thank you............... I will take full credit...........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/13/2022 1:37 PM DST

[Jp2sea]

Thanks for sharing. I've heard Provenge is very costly and hadn't heard about using it early in combo with others.

[GeorgeGlass]

God bless you and your dad. Stay proactive and informed. Spend quality time together and laugh allot. Exercise too.