I am BRCA2+. Was on Zytiga for just six months after it initially lowered my PSA from 20 to 0.12, but started rising to 0.55. Switched to Olaparib five weeks ago. Also started Provenge 3 weeks ago, just having finished my second of three rounds. PSA now back down to 0.13 probably due to Olaparib and not Provenge.
So glad I had the genetic testing from Color Genomics, which identified my BRCA2+ diagnosis and determined that a PARP inhibitor should be considered as a viable treatment option. Have two daughters who also had the test, and both are BRCA2+. They are proactively pursuing options. While this is devastating to me, it is definitely better for them to know sooner than later and to find viable options.
Had I known sooner that I would be predisposed to aggressive PC I would have had a much earlier biopsy before it rose quickly (6 weeks) from 5.5 to 20, and my then Oncologist didn't see the need. Thankfully I didn't follow his advice and found another Dr. An earlier biopsy may have caught my PC before it spread to my pelvic bone.
Knowledge is power!
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HopingForTheBest1
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After being a stage 2 breast cancer survivor (15 years) and now APC I did testing too. Wanted to be sure I wasn't passing all this on to my son and granddaughter. I'm not. My MO's and where I got tested both told me my son needs PSA testing at 40.
I'm glad you found a good therapy for you and hope it works. I hope you don't dwell on when the metastasis occurred - it may have been there dormant for a long time. The important thing is you are dealing well with what is on your plate.
" Also started Provenge 3 weeks ago, just having finished my second of three rounds. PSA now back down to 0.13 probably due to Olaparib and not Provenge."
That downtrend in your PSA is most likely the reason behind you being denied SSDI. Simply put and In the eyes of the adjudicator your condition is improving.
Perhaps I misstated the criteria for approval but as I read it a diagnosis of Prostate Cancer – Hormone Refractory Disease is defined by "disease progression despite androgen-deprivation therapy (adt) and may present as one or any combination of a continuous rise in serum levels of prostate-specific antigen (psa), progression of pre-existing disease, or appearance of new metastases". My reply to HopingFor.. was based on his PSA falling from 20 to 0.13 which I now understand was the result of treatments after his denial. I also did not see any mention of metastasis in HopingFor comment, that may also be a contributing factor for denial.
As far as my reply being "not realistic or humanistic" I refer you to the last line of the SS Program Operations Manual System (link in my previous post) which reads, "Adjudicators may, at their discretion, use the Medical Evidence of Record or the listings suggested to evaluate the claim. However, the decision to allow or deny the claim rests with the adjudicator."
The decision to allow or deny the claim rests with the adjudicator.... , that is what I'd call "not realistic or humanistic". But like I said with a falling PSA the adjudicator may see him as having "an extremely high long-term survival rate" or as I carelessly stated a condition that is improving.
I misspoke , I did mean the adjudicator , not you .. the adjudicator should understand the nature of this disease is to hide. No cure. So he’s getting better so no help ? That’s bs in my book , not realistic nor humanistic .
It sounds like you are on the right path! How did you get PARP inhibitors without a clinical trial? We have been turned down by insurance. My husband is BRCA2+ as well.
And this may be helpful to you...we are seeing an Epigenetic specialist who supports women with BRCA GENE prior to ever getting anything cut/removed. With some natural IV’s & no side effects he can help repair the breaks in the DNA so they never get cancer. Orange Coast Medical Center of Hope (Dr Nezami)
I (76) discovered I inherited BRCA2 mutation from Grandpa long after my PCa Dx. He died 81 PCa but my Mother at 53 with breast cancer. Aunt and 7 of her children died early various cancer. My daughter safe as she got my wife's BRCA2 instead.
Had I known earlier would have been more proactive when my PSA started creeping up above 4. Instead one day I'm PSA 1303 and stage 4 PCa a year ago. PSA down below <2 for last 5 months with ADT, Lupron and Alkaline Therapy.
Able to notify remaining cousins and their children to get Genetically Tested. Hope I may have helped someone.
My Oncologist needed to make application with AstraZeneca, the pharmaceutical drug company, and got approved for off label use outside of any clinical trials. My drug insurer is covering the cost 100%.
Appreciate the info about an epigenetic specialist. Will research what may be available here in NJ.
we're on the same exact boat. BRCA2 and Abiterone stopped working after a few months... PARP inhibitors seem to be the next thing. Glad that it seems to be working for you!!
What kind of insurance coverage were you able to get?
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Car T vs Provenge treatment
Provenge - Supplements to activate modified cells or augment Provenge treatment
Adding PARP inhibitor (Olaparib) to the Standard Therapy (Zytiga/ADT/Prenosone)
