59 years old. Metastatic/high volume. PSA hit 366 before starting Abiraterone and Degarelix. Start Lupron next week. Negative on DNA test. Will see what PSA looks like next week after a month of ADT.
My question chemo, no chemo or wait on chemo? Onco and Rad Onco both seemed to have a very soft attitude towards it. "you can do it if you want", "you're busy and it may be inconvenient right now"... To this i say BS! Do I need to do it or not? What does that data say? Is it to my benefit to do it - do it now , later, not at all?
I do have confidence thus far in my care team and I know 'everyone's different', but come on - what's the benefit and do I need to do it or not?
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I'll meet with him for the 2nd time Monday. Will eval PSA and start Lupron. We discussed a lot in our first meeting and he brought up chemo and we discussed some but felt we had been given 'alot' of info that day. His attitude may be different now that we've had time to adjust to shots, pills, radiation therapy and everything else. I asked and he forwarded STAMPEDE study info to me, so I'm sure he's up to speed. We'll see what his thoughts are on Monday.
I probably didn't communicate well. Here is the link he shared with me. I'll discuss all this with him next week. Thank you for sharing the additional info. I will absorb that this weekend!
That is misleading when it says: "The decision on which therapies to combine can be complex and is influenced by several factors, including:... •The amount of metastatic disease, classified as low vs. high volume."
There is no data showing it makes a difference. Triplet therapy is the SOC for ALL newly diagnosed men with metastases. The fact that not enough low-met men have yet died does not mean that it is not the best therapy for low-met men. It only means the data have not yet matured for that subgroup. Meanwhile, triplet is the best therapy for all.
Did I like chemo, no, but I think it might be while I'm still around. PSA was 212 back in August, 2014. I have taken APAC vaccines which are different from what they do here. It was clear over in India. I did do 11 vaccines back in 2018 that had the thing that COVID had. I was pretty lucky to still be here. You never know. August 8th will be 10 years. Good luck! There's also radiation against the prostate that is way higher than FDA approved here. There's a pilot that flies for an airline, and it was in his bone. So far he's on zero treatment. A friggin' miracle. Hopefully it won't come back. They've been doing it for 10 years there by Dr. Sen at Fortis Medical Center.
Thanks, John. I think we intend to do it. My brother is retired doctor and cancer survivor. He is pretty insistent that it needs to be done and certainly everything we have read is Triplet therapy is the standard. Was invited to an NIH trial for an updated version and will talk to them soon about it.
Listen to Tall Allen ,for what it is worth when I was diagnosed i had a PSA around 375 and it had got outside the prostate into the bones and lungs. Stage 4+4 .Went straight onto hormone therapy then six rounds of chemo.PSA now hovers around 0.008 for the past 18 months.I know i have had a remarkable result and 8 months ago purchased another first aid business working 5/6 days a week on average .Changed my diet a lot not really exercising but i guess doing onsite jobs is my exercise.No mets now except for a couple of tiny spots on the lungs .Last night the first time i have had 4 hours sleep without going to the toilet. I am seeing the professor tomorrow and i will keep you posted as i have not been to see him for 4 months.
Thanks for chiming in Brianne07. Super to hear how well you are doing. We meet with doc for my first followup since I started Abiraterone and Degarelix shot. Tomorrow will start the Lupron therapy. I'll do chemo and imagine will start within a few weeks. Got first bloodwork back since ADT therapy started and PSA is down to 3 from 466 and testosterone down to 22.7. So trending the the right direction!
Update. PSA has dropped from 466 to 3.7 in 1 month after degarelix shot and oral 1000mg abiraterone. Had my first Lupron shot Monday. Man, my butt is sore! So, very positive drop in PSA which is welcome and encouraging. Planning on chemo starting in mid-May after my daughter's graduation.
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