American Horror Story

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

23 Replies

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  • Damn--sorry!--don't know what else to say! I hope he is as comfortable as possible.

  • 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

  • Whoops. I meant to address my remarks to Chuck, not Gus. Thanks, Gus, for sharing Chuck's story. Kindly pass it on to him.

  • Sorry to read Chucks now at the end of a battle well fought, thank you for sharing this.

  • :'(

  • 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?

    Peace, Joe

  • 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.

  • Gus, sorrowful story. To take all the treatment abuse, and to be tossed into the heap of Pca failure, as you describe, kind of straightened out my back today. As a Gleason 9, myself--the short leash theory, sure applies.

    Nalakrats

  • Nal,

    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.

    Gus

  • Gus, I had to wait 2 months after surgery to know where My PSA settled--and it settled near 8, from 20+. The Triple ADT plus my Supplemental program took my PSA from the 8 area to Undetectable in 3 months--and has remained there. Stopped in with my Doc. about adding Metformin today. There is a consult to go on with the Oncologist, the Urologist and my Family Physician. There is a question, of Blood work monitoring, so that I do not go too Low as to Blood Sugar.

    If you are on Metformin---what is your protocol, and how are you monitoring the Blood Sugar? Are you using the Diabetic stick kits from the drugstore. Right now my Blood Sugar has gone from 95 to 114--So I am being affected. Had to cut out every bit of Sugar, and Flour products. Await what you know.

    Nalakrats

  • Nal,

    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.

    Gus

  • Gus what is your daily dose--how much per day, how often per day, With or without food. Basic questions. Thank

    Nalakrats

  • Nal,

    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.

    Gus

  • Gus , thanks for info, also the reverse parallel with free PSA and PSA is correct. As Free PSA goes down, your normal PSA Test goes up. Has to do with the Free PSA finding Blood cells to attach to, and thus be read by the blood test.

    AS to my Doctors remarks---they come from a knowledge of Ductal Cribriform, being a rare aggressive pathology, usually having a survival rate of between 6 to 18 months. The story is so too long. Just lets say, after discussions with the Heads of Pathology at Emory and UCLA--I came up with a supplemental plan to try to halt angiogenesis, what cribriform likes to do best, while going on at my insistence, the Dr. Meyers 3 Drug ADT protocol. So my Doc. is amazed--he does not know what is working to keep me, undetectable. Only 130 men a year get what I have---so we have no studies of the best way to treat. And the Drug companies had no answers also.

    And with my age of 73, with my Doc having had 2 quick failures within a year--over the years, of his practice, with my exact pathology, lead him to josh back and forth with me, about how long I might be able to fight my Pca. We agreed that my pathology was better than having small cell--as almost no one survives, small cell.

    That is why I did the Gene mapping, to know my Mutations--and what drugs not spoken of on this site-that may work for me later. They are not approved by the FDA for Pca--but being used in other cancers. For other cancers have mutations, and some are the same that we may have. The science of using the same drug against the same mutation, even though there would be different cancers, have not hit the minds of some of our Medical Idiots.

    All for now,

    Nalakrats

  • Gus, what is Chuck's last name?

    jal

  • 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.

  • Magnus,

    I agree with you 100%.

    A member of the Reluctant Brotherhood,

    Rich

  • Chuck, our prayers are with you. Gus, when was Chuck diagnosed?

  • Today a disease history like this may well be treated with early chemo ..... whether it would have made a difference for Chuck is not known, but there is evidence that earlier chemotherapy may well do for some.

  • Thank you Gus for sharing this sad story with us.

    I feel deeply sorry about Chuck and wish him brighter days without any suffering.

    Anything can happen to us with this deadly cancer and

    We must be prepared to face!

    Sisira

  • 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....