Chuck had PCa G 7(4+3)...had a RP which failed...BCR at 8 months...Had SRT which failed..BCR at 11 months...PSA DT of 11 months....went on IADT when PSA reached 2 and responded well with one year on and 18 months off..the trigger point being a PSA of 2. Not being satisfied with controlling the beast...like many of us...wanted to go for the kill and went to The Mayo Clinic and had the Choline 11 Pet Scan which identified 4 Hot Lymph Nodes. But 2 of the lymph nodes could not be safely surgically removed so the plan was 4 months of ADT and then 37 doses of radiation. Remember, Chuck had previous SRT so the plan was to radiate all the lymph nodes but limit the doses to the pelvic nodes that had previously radiation.
Chuck reached a PSA nadir of <.1 but the PSA started rising after 15 months. Side effects of the radiation were Monoclonal Gammopathy and Normocytic Anemia. But here is the kicker...his previous G 7(4+3) with a DT of 11 months was now a G 9(4+5) with a DT of 30 days..seems all the radiation did was select for the most aggressive cancer cells which survived and multiplied...maybe, the idea that the enemy of my enemy (radiation) is my friend is flawed . Chuck went on to fail Zytiga, Xtandi, Xofigo and chemo within 13 months...his body lights up like a Christmas tree on Pet Scans with a PSA of 6300. Chuck is now in hospice on a morphine drip. The moral of the story..live with PCa and keep it on a short leash as long as possible.
Gus
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gusgold
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Sounds a lot like our experience in many ways and thus the reason that I say often the treatments can be worse than the disease and take away what time you might have enjoyed, leaving you worse off. I pray that Chuck is comfortable with hospice now helping. Thank you for sharing your difficult story as everyone can benefit from all the shared experiences to aid them in making their own decisions about the treatments available. God be with you.
Charlean
Gus, you fought a good fight not just for yourself but for all of us who benefit from what you shared. Stories like yours give us clues to guide us on our choice of treatment and timing. May your future days be ones of comfort, peace and gratitude for a life well spent.
Fred
in reply to
Whoops. I meant to address my remarks to Chuck, not Gus. Thanks, Gus, for sharing Chuck's story. Kindly pass it on to him.
That's 84 plus months since original RP at least . The issue is when one tries to fight the beast with scans there is a dilemma - which is once you know where in the body the cancer is what to do with it.
Gus, that's about the worst it can get, it's a real shame. Send Chuck our best wishes, would you?
Very sorry to hear of the outcome. once primary treatment failed, treatment choices is still a hit and miss on PCa. I just hope more funds and effort will go on PCa cause to better guide future decisions on how to control this beast. Please send to Chuck my prayers of ease and comfort in his stay at the hospice.
From what I have been reading the fact that you response to ADT was <.1 within 3 months after initiation is a real good sign that ADT will remain effective for a long time.
These are the kind of decisions we all make. I had a very aggressive doctor after my PSA began to rise. He wanted to put me on radiation and chemo all at once. I fired him. From that point on I realized that there is no "cure" for PCa. Take each treatment whether alternative and conventional and the blessings it provides for a long it lasts. I have been fighting this disease for 24 years.
After 12 months Lupron went from normal blood sugar to pre-diabetic....after starting Metformin blood sugar went back to normal...my understanding is Metformin does not require regular BS testing like insulin...doc checks at 6 month physical. Myers says everyone on ADT should be on Metformin because it can prevent pre-diabetes and makes the PCa less aggressive over time. Another benefit...in a double blind study diabetics on Metformin lived 8% longer than non-diabetics not on Metformin. The Life Extension Foundation calls Metformin the most effective life extension drug ever discovered...The U.S. Gov is now sponsoring the first Life Extension Study involving Metformin...Look at it this way....Metformin makes PCa less aggressive and can add 10 years to your life span...if diabetics on Metformin lived 8% longer than non-diabetics, how much longer would a non-diabetic on Metformin live.
Your BS going from 95 to 114 is a normal side effect of ADT (insulin resistance)...you don't have to change your diet as Metformin treats insulin resistance and your BS will go back down to 95. Myers says to take 2000 mg per day...1000 mg in the morning and 1000 mg in the evening...always take with food...Metformin is hard on the stomach so I started with 500 mg...I also take the extended release formula which lessens stomach upset.
You mentioned in an earlier post a doctor told you to get ready for hospice when you were diagnosed...why would he say that.
Also, I just talked to an oncologist who told me percent of Free PSA is a marker of tumor aggressiveness...10% free PSA indicates an agressive tumor....10-15% is the norm...and 20% and higher a benign tumor...or looked at another way time to CRPC...Myers says Metformin makes PCa less aggressive over time...you should always have the Free PSA percent measured as part of the PSA test...start now before Metformin and see if the % Free PSA goes up over time after you start taking Metformin...when your % Free PSA start to drop that is the first sign ADT is starting to fail.
Wow! Very sad. It seems that we cannot always "slay the dragon" and I believe that one big lesson is to cherish the time we spend "now", whether fighting overwhelming odds or favorable ones.
We also need to remember that every doctor has a specialty and a protocol they subscribe to (i.e. they are biased). It's easy to panic and just follow the "expert opinion" and it's totally understandable but that is exactly the time I believe we need to step back and reassess options, do more research and decide if there is a therapy well suited to our specific condition. Many times, this is easier said than done because of how many variations on a theme there are with prostate cancer.
If the odds are overwhelmingly against us, it is time to decide if there is a therapy, clinical trail, etc. that we want to commit to or if we would rather try to maintain a slow glide as long as possible and spend our remaining time in more meaningful ways....
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