Experience with Triplet therapy followed by IMRT and SBRT

Hi, sorry for what you are going through.
I just made a post as I'm in a similar trajectory. My PSA is up to about 12 and we are not able yet to locate it for radiation, but I may need be headed for triple therapy too. Two hormone drugs and chemo. I too am apprehensive about the chemo and its effects. The ones I'm worried about is nerve tingleing in extremities and changes in taste that may be permanent.

I'm going to Mayo in MN for some more imaging and a treatment plan. I think Dr Kwon will recommend an aggressive approach.

I can't answer your question, but hoping for some of the same insight from others. Just what I have read in books and watched on Youtube with the PCRI.org videos. There is some really great information on pretty much all related aspects of Prostate Cancer. Cancer sucks 🙂

Cheers!
Bert

Briefly commenting as spouse supporting double chemo (Docetaxel + Carboplatin) and double hormone (Firmagon + Nubeqa). Round 5/6 of chemo tomorrow. As for the neuropathy, we do the icing of hands and feet, and he also sucks on ice, cold drinks starting 15 min before and throughout the infusion and so far have prevented neuropathy in hands and feet. We learned this from others who also had success. I would recommend to get the booties and gloves (Amazon) as the first time we used ice in bags and it was a mess. We bring the frozen items packed in ice bags in a small cooler to infusion days. Hope that helps!

I'm sorry about your diagnosis. I am denovo high volume to the bone only. I was diagnoses almost 3 years ago on my birthday 07/27/1962. I had 10 cycles of radiation to my spin and five additional cycles to the ribs. I started with Casodex for 30 days followed by Eligard shots every 3 months and Nubega 600mg daily. I immediately started chemotherapy and completed 10 cycles. Remember that everyone body and how they react to treatment and cancer is different for everyone. I recommend icing your hands, feet and head (only if you still have hair). Hurts like hell if you are bald. The ice reduces neuropathy. I handled chemo much better than radiation. I lost 35lbs during radiation and did not think I was going to make it. Chemo was easier but still difficult. I had the fatigue everyone experiences. You go in on Tuesday - you get an premed ID of Zophran, Benedryl, and steriods which made me sleep during infusion. I went to work everyday and by Friday at noon I could feel the death occurring inside my body and I just got very tired. I dragged myself through the day leaving work around 2:30pm and by the time I went home I was on the coach asleep. I also slept most of Saturday too. By Saturday evening or Sunday morning I started getting some strength back. On my 10th cycle I had to got to the ER because my esophagus become inflamed. After more stomach meds and steroids I was better. Some people cannot even handle 1 or 2 cycles of chemo. Everyone is different.

What I tell everyone is that this is about killing as many cancer cells as possible without killing yourself. The 6 cycles of chemo was chosen arbitrarily for the purpose of reducing side effects. You do have the choice of doing up to 8 or 10 cycles. For me, I did not want to leave any rogue cancer cells that could later mutate.

I became undetectable 1 month after chemo ended and I have remained undetectable. I had my 3rd bone scan last month and you can barely tell I had any metastases.

It is your choice. I say fight as much as you can.

So, you haven’t done any radiation yet, but are currently on ADT & ARPI, will begin Docetaxel (taxotere) in August, and then radiation to your prostate and mets.

Is your prostate cancer still hormone sensitive?

Congrats on remaining undetectable! Did you do radiation to your metastases before you started hormone and chemo therapies? What did you experience during radiation? Did you have SBRT to mets?

Haven’t had any radiation done yet. Yes, PC is still hormone sensitive.

Hi Bert: I too am unable to find the cancer with PSMA pet with a 4.2 PSA. Have you been advised why with a PSA at 12 you still can’t locate it for radiation purposes? I also tried an Axumin scan which showed nothing.

You’ve tried PSMA PET scan, but can’t see any cancer cells expressing PSMA; you’ve tried Axumin PET CT scan, but can’t see any cancer cells that are absorbing amino acids.
Have you tried the older F18-FDG PET/CT scan, to find cancer cells that are using glucose as their energy source? They’re rare, but they do happen.

Yes. I had SBRT radiation to the bone mets to my spin and ribs before starting ADT, but while on Casodex for 30 days. The cancer manifested itself through intense pain in my back. That is why the doctors immediately started me on SRBT radiation. The radiation treatment for the first 5 cycles to the spin were easy. After 5 it got very difficult. I felt burned from the inside out and I struggled to eat and to keep weight on. The doctors forgot to radiate my ribs. So, after completing 10 cycles to my spin they immediately called me back to radiation the ribs for 5 additional cycles. I lost 35lbs. After the treatments were over, I would say 3-4 weeks later my appetite started returning and I was much better. But then I immediately started chemo. I was told by my doctors that starting chemo in the first 3 months of treatment was vital for overall treatment. My wife did some research before I started radiation and found Studies suggest that blueberry extract may enhance the effectiveness of radiation therapy in treating certain cancers like prostate cancer. I do not regret getting radiation - but it was probably the most difficult treatment in my journey. Others that get radiation to the prostate bed do not have the same experience. It is much easier. I have a friend who just finished radiation of his prostate and prostate bed and he says it was easy. I think when you have radiation to the spin and ribs it is going to the organs and stomach which cause more challenges. So, in fact I have had quadruple therapy - radiation, ADT, ARSI (i.e., Nubeqa), and 10 cycles of Chemotherapy. Oh, I also get a shot of Xgeva every 6 weeks for my bones. July 27 is my birthday and the day I was diagnosed. I just want to get past it as I do not celebrate that day anymore. Again, treatment is between you and your doctor. Everyone's cancer is different. That is what scares me. It is unpredictable. Do not listen or accept anything on the internet. Many men with stage 4 prostate cancer live past the cancer and die of something else. Overall survival depends on several factors, how effective your treatment is, your age, and your overall health. My first doctor told me I could live, 5, 10, even 15 years with this disease. Another said he had people living with this disease 15, 20, and 25 years long but the average was about 6 to 7 years. Those stats were before triplet therapy and Nubega (i.e., Darolutamide). Right now the doctors do not know hw long men who have successfully completed triplet therapy will live. Because we are all still alive.

Good luck with the last round of treatment.

I’m going to get the ice mittens and socks too. How many did you use on treatment day and how long would you keep them on before switching to a new frozen pair?