Just completed six rounds of docetaxel+carboplatin last week and will be seeing my doctor at Mayo on March 30 for further scans to gauge progress and evaluate next steps. Meanwhile, my oncologist at MN Oncology has recommended that I do genetic counseling and further genetic and tumor testing. I am 43% Ashkenazi Jew (source: 23 & Me), which makes sense since my Mom's parents were both Jewish, from Hungary and Czech Republic. Earlier this year I did Guardant 360 (circulating tumor) which came back negative for any pertinent mutations. The oncologist is saying that he is seeing good response to Lynparza, even among patients who don't test positive for BRCA1 or BRCA2, but wants me to do further testing to possibly establish a link, so insurance would cover. Otherwise, he says I should consider going off-label and paying out-of-pocket. In terms of history, I never received any report on my tumor DNA after my first diagnosis and biopsy in 2019, and the oncologist at MN Oncology says we need to have Moffitt Cancer Center (where I originally received treatment) send the sample to Foundation One on Was Coast for analysis. I'm a little confused about what kind of tests I should be expecting (or requesting). Advice would be appreciated. Also, has anyone gone off-label with Lynparza, without having the BRCA mutation, and how did that work out? Thank you for any feedback you can provide!
Genetic counseling & testing - Advanced Prostate...
Genetic counseling & testing
The new data from PROpel and TalaPRO-2 is showing a benefit when combined with abi or enza, even without BRCA+ (but not as monotherapy):
I'm seeing Dr. Kwon for the first time later this month.
Any advice to give me?
Your input would be greatly appreciated. Thank you.
A former skier - 2 broken legs - Zermatt & Kitzbühel
I don’t have any practical advice, but can only say that I have deep respect and gratitude to Dr. Kwon for my current status. I explored treatment with several doctors at other cancer centers and found Kwon to be the most aggressive, personable and also funny! Meaning, he’s very approachable, communicative and direct. Most important, he seeks to “cure” the cancer, not just provide SOC or palliative care as many doctors do. As unlikely as the “cure” might be, that approach results in a more aggressive and creative approach to the treatment. He’s a big believer in frequent scans, blood labs and genomic testing. Kwon has a very loyal and dedicated staff who I’ve found to be VERY responsive to my questions. You’re in good hands and I wish you every success!
Thanks, you confirmed my thoughts about Dr. Kwon.
Just a couple of questions...
Did you do your chemo where you lived then go to Rochester for scans bloodwork etc?
Before I see Dr. Kwon, do you think I should get a genetic test of my cancer and have the results sent to Rochester along with my medical history?
Again, thank you.
He works closely with Dr. Vladimir Hugec at MN Oncology in Maplewood, in the MSP area. That’s where I did my chemo. Great team there.
I would hold off on genomic testing until you get direction from Kwon. He seems to work exclusively with Guardant 360 for genome testing for mutations, and he tests regularly because new mutations can develop and, perhaps, be treatable. I did my genetic counseling and DNA analysis here in MA at Dana Farber, and that’s probably good to get done ahead of time if you can.
I’m no expert in this, just talking from personal experience. Others might have more valuable insights and advice!
excellent advice...much appreciated.
I'm now at Mayo and have met with Kwon....amazing man. Question...why did you choose MN ONCOLOGY for your chemo rather than going local? Are they superior in some way?
Couple of reasons. (1) The cancer doc at my local hospital didn’t support the chemo treatment plan of Docetaxel + Carboplatin, so they were not eager to provide the infusion, and (2) most importantly, Kwon recommended Dr. Hugec at MN Oncology, and they work together as a team. I wanted my treatment, and my team, to be as seamless as possible. I have never regretted that decision.
Makes sense and that's what I'm going to do... fly in every 3 weeks from Santa Barbara. Thanks so much for your really helpful advice. Hope you're back on the slopes. For the past year, I've been on a palliative treatment plan, with disappointing results.
Can you provide a little more detail about your diagnosis and treatment?
Lefty26 have you started your treatment with Dr. Kwon?
Hi, so you have No Germline or Genectic Mutations and You had a complete durable response to Lu-177 Pluvicto. It seems guys with Mutations have hyper / hypo progression with Lu-177 Pluvicto
I don't know how "durable" my response will be, but correct in terms of my lack of mutations. Feels to me like there is so much more to figure out about why these treatments work on some, but not on others.
Happy for you, Keep Going !!!
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