Per my history (summary), I was stage 4 with spread to my bladder neck and at least two lymph nodes. I have been on lupron for two years and keytruda for 22 months. My oncologist had done another genomic test via a blood draw a few weeks ago. We discussed the results today. Since there were no genetic mutations, and based on my undetectable psa readings for 18 months, he stated that I was in "clinical and genomic remission".
That also gives him the confidence to stop my treatment in April, which is the two year mark. Just wanted to pass on some good news.
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tennis8285
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i also use Labcorp - a few months ago, the regular <0.1 undetectable reading dropped to <0.008, due to superior technology replacing the old equipment. Then it went back to <0.1 -- i've used only a cocktail of bicalutamide, tamsulosin and finasteride for over 3.5 yrs, GL 4+3 - no surgery nor radiation. I've had urgency but no incontinence; ED maybe due to being 75 with no partners for 8 years but I'm alive and kickin' and one helluvan imagination!😜
When I was originally diagnosed with stage 4, I did have a genomic test done about two years ago which showed multiple mutations. By the way, I made a slight arithmetic error. My psa has been undetectable for 20 months straight, not just 18.
I majored in Biology/Chemistry and an MS in Public Health and I am not aware that this is possible given today's technologies. Hmmmm Could there be some confusion in the nature of these tests? Check out Color.com genomic testing for Oncology for more info on the nature of testing at present.
The original report in 2020 was based on a tumor slide at the bladder site. Results showed MSI-high and tumor mutational burden was 44 muts/Mb and was performed by Foundation Medicine.
The recent genomic was performed by Guardant and was based on a blood sample. Results stated: “No tumor-related somatic alterations.” “Bio-marker MSI-High was not detected.” Tumor response map was blank. Somatic alterations were not detected in the circulating cell-free DNA isolated from this patient’s blood specimen.
Please educate me as to why this does not seem right.
Hmmm Perhaps the blood test was specifically for BRAC1 and BRAC2? The Color and Invitae Genomic testing I have had done were both saliva tests, but my BRAC1 and 2 test was a blood test. All negative for mutations. I don't recall specific genomic testing from surgical pathology. Thanks
This is great news. Question. Why are you locked into stopping treatment to “see” the responses of PSA and scans after two years? Not being critical at all. I ask because the clinical trial I was in called for a two year stoppage also with clean scans and undetectable PSA. Yet, my MO had to sell me to stop after another four years. Maybe I was wrong; maybe not. I just wanted to kill all the little bastards to not give them a chance to rear their ugly head. Call it my security blanket. Note that QOL and side effects never entered into my equation as all of which are usually easily managed.
Immunology trials were always in my arsenal, as well as the new silver bullets used to day. I did not need. After 17 - 18 years, it’s been a long journey, yet one that I would not change today.
Anyway, again congratulations. I am just curious......
I guess that you could argue both ways. However, I am willing to stop treatment and re-establish my QOL. If psa comes back, then conceivably we could start back on lupron or keytruda or both. Or another treatment.I don't know if insurance has anything to do with the two years, but it's possbile.
Insurance has nothing to do with. Heck I can go on annual blood draws and I am sure instance would love that, however I want quarterly draws. Anyway, good luck. I have zero issue if anyone wants to go on vacation, stop for QOL and see. It’s just not me. My mindset is completely different, does not mean that I am correct. It’s just my path prior to 2010 to kill the little bastards. There is more than one way to skin a cat and if it gets the done, great.
GD
in reply to
Hit it on the head! My question too is why drop adt so soon ? I understand to feel better but isn’t that poking the 500 pound gorilla that’s In the room with us? In my case 7 yrs on adt still .When i asked my My SOC MO what about stopping adt he said “ what are you, crazy”? I too think that it’s Better than APC chomping me down . Imho
Wonderful news. I have also had 2 sets of genomic testing with negative results...on ADT for 18 months with undetectable PSA....and started this journey at GL9/Stage 4 and have also done RP and 38 sessions of Radiation. People were less than encouraging. Your post gives me hope!
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