genetic testing on their prostate cancer

[mine1958]

Has anyone done genetic testing on their prostate cancer to see the aggressiveness? If so did it help them to diagnose the treatment they are receiving? Thank you

[mine1958]

Thanks mine is being done at Sloan Kettering

[mine1958 in reply to mine1958]

So why are you suggesting calling Foundation one?

[Tall_Allen]

The kind I think you are talking about show genomic alterations - some associated with better or worse prognosis, and a very few that are actionable for treatment. Most people find nothing currently actionable. More important than a genomic analysis is a thorough pathological analysis of tumor tissue.

[mine1958 in reply to Tall_Allen]

So are you suggesting call foundation one if I have any questions?

[Tall_Allen in reply to mine1958]

No, I didn't suggest that. There are just one of several testers. Go with whomever your doctor recommends, and ask your doctor for a pathological examination of biopsy tissue. I'm saying that personalized therapy for prostate is in its infancy, and very few men are likely to get a report with any actionable findings. If you do - great! Also, be aware that metastatic cancer is a moving target and the findings you get now will be different from the findings you get later.

[mine1958 in reply to Tall_Allen]

Thanks

[Magnus1964]

The genetic testing I had was to find if I was a candidate for certain treatments like Parp inhibitors.

[mine1958 in reply to Magnus1964]

Anyone have any experience with generation sequencing?

[FGSmith]

The genetic testing I had did find the ATM mutation, which does offer additional treatment down the road. I had both the Foundation One tumor test and the Guardant Health blood test. I have to admit I do not know if one test offers more than the other, or why both were done as I was still in my "shock" stage when they were discussed and I wanted as much information on my condition as possible. Neither was covered under insurance, but with my MO's help, the cost was minimal.

[julietg70 in reply to FGSmith]

Can you tell more about how your MO helped? Did they work with Foundation or Guardant to get it covered?

[ellie2211 in reply to FGSmith]

Yes, I'm wondering the same. Are there foundations that help with payment?

[2dee]

Genetic Counseling leads to Genetic Testing If you qualify.

Gene mutations such as BRCA2 open up further PARP inhibitor treatments when found. 2 new ones just FDA approved.

See if you fit to help guide you and your bloodlines treatment choices.

Start now.

2Dee

[mine1958 in reply to 2dee]

Thanks

[Fuzzman77]

My onco had the Genpath test done on my tumor tissue cancer from my original path slides. Showed I was MSI High with a partial MHL-1 mutation. Being MSI High qualified me for Keytruda in July, 2018. Still on it, but looks like I have developed adrenal insufficiency recently. Probably will have to add hydrocortisone or take a break. I was already on APCEDEN vaccines for year or so that had melted 30 tumors when Keytruda was added. Was stable for two years with cancer only showing in the prostate so had a prostatectomy last September. PSA got to undetectable but after six months or so jumped back up to .24 so onco added Zytiga. back under control again. Fortunate to feel fine with no limitations except the dreaded ED. Dx’d in August, 2014 with PSA of 212, Gleason 9 so have been lucky. John C. White is a resident expert on genetic testing and is an advocate. He’s done almost 50 infusions of Keytruda. Mine is super aggressive unfortunately and will be on treatment for life unless some miracle is discovered and allowed to be used on patients. Best of luck. And Allen is right, it is taken from your path tissue, and it can and does change.

[mine1958 in reply to Fuzzman77]

Thanks

[Gunnershome in reply to Fuzzman77]

Hi...we have also been in touch with John White. He is a wealth of knowledge. We too had the Foundation Test don’t. My husband has the Ptch1 mutation. I will have to check on his MSI. My husband is Neuroendocrine PC. Gleason 10. Mets to liver and a few bones. Just started chemo with the hopes to give us some time to figure out the next step. Could you share more of your info? When diagnosed? Treatments so far? Are you going to a large medical center for the trial?

[Fuzzman77 in reply to Gunnershome]

Started with Lupron and taxotere. Had to stop Lupron after 15 months due to side effects. Eight months later PSA popped up to 8.8. Tried DES, and nothing really helped. In March, 2017 went to Delhi for autologous dendritic cell Vaccines made from my own tumor. After six vaccines 30 tumors went away, all but the primary. Onco has started Zytiga and it was failing after six weeks just before the vaccines. Even though it was failing it worked while on the vaccines. Very fortunate that I respond to immunotherapy. After two years stable had the prostate out and after six months PSA started rising. Added Zytiga again to the vaccines and Keytruda which I have been on two years now. The combo has brought my PSA back to non detectable, >.01, and NED. I also did Xtandi for maybe 18 months but quit due to fatigue last December. Someday I am sure Zytiga will fail me but for now can pretty much do what I want. No pain anymore since it has been gone from my bones for three years now. It’s still lurking I am sure. Immunologist thinks I should do Lupron again if even for a few months for a longer PFS benefit. I may when the weather is cooler again and I have an oncologist that will give me Megestrol to fight the hot flashes. You can look for the paper written about my case by Googling APCEDEN regression. I’m the 58 year old male. It’s pretty technical but the PSMA PET scans tell the story. I was at the end but the vaccines brought me back and Keytruda definitely brought recovery to another level. Will be six years next month from 212 PSA, Gleason 9. The paper about me says Gleason 8 but Cleveland Cljnic restaged it Gleason 9 but I didn’t have that result with me is why they reverted to the local path lab that showed it as 8. Who knows if MSI High helped me respond to the vaccines? Tall Allan may know about that. I’ve been very fortunate. Still no radiation. RO said he wouldn’t know where to radiate.

[Gunnershome in reply to Fuzzman77]

Wow! Thank you for sharing your journey!!! That is wonderful that things are working!! I will google your story later today!

May I ask if you see your local oncologist or if you travel for treatment? We live in FL but have been to MD Anderson and Sloan. Our local oncologist only does SOC. We are looking for the next step/place to go. 👍

[Fuzzman77 in reply to Gunnershome]

I see my local oncologist for Keytruda which is covered. He is 100% behind the personalized vaccines I have had made in India. I really was in very bad shape when I first went there. He told me that we can keep you guys alive sometimes for years, but that I am his first prostate cancer patient he’s had that actually has gotten better. I am under no illusion that I have a very aggressive cancer that someday will come back. At least I am living life again instead of just suffering. I’m just not as strong as I used to be. I did travel to India for the vaccines. I went to Cleveland and they were great but only SOC. Sloan was a huge disappointment for me. I went because I kept having renal failure due to Lupron. They did absolutely nothing to help me. I was flabbergasted to be honest with you. 60 full body hot flashes daily to the point of being hospitalized several times and they just offered me the same thing I was on that was killing me. Very cold as far as I was concerned. Unfortunately there are better treatments outside the USA. Welcome to American healthcare.

[caltexman]

The Foundation One test I took did not find the prostate cancer mutations they look for but I did have an unfavorable Decipher test. These tests do assist in planning for the future. Nalakrats and Tall_Allen are my go-to guys for guidance on battling the beast and helping me look smarter when meeting with my oncologist. Be sure to check out Nalakrat's review of trends with BAT (Bipolar Androgen-based Therapy for Prostate Cancer).

[KJMinPhx]

I had one from Mayo and it says I am clear no defects. But I am still on ADT therapy and it is hard on me. I guess the genetic testing was slightly reassuring but I’m still stuck with the same cancer and the same treatments

[mine1958 in reply to KJMinPhx]

Thanks stay strong

[immunity1]

In general, genetic tests are not a accurate indicator of aggressiveness of a PC. Rather medicos look at the architecture of the prostate for assessment in order organise primary treatment. However, certain mutations (indicated by others above) highlighted with genetic tests can open up the possibility of certain new treatments. Genetic testing may be germline (present in all cells of the body) or somatic (present only in the PC tissue). PC is believed to mutate under protracted treatment 'pressure' often leading to a difference between the two. Look for the provider who can most cheaply look for the minimal number of mutations that are treatable such as BRCA1/2, ATM, CHEK2 (otherwise it is an academic excercise likely to hurt your pocket).

[Healer73]

At Mayo when dx (Gleason 9, extensive bone Mets) on February 6 th 2019 I had both germline & genetic testing. Luckily I had no markers. So I am on Lupron, Zytiga and Zometa. PSA was 3194 and today is 0.05.

Good luck and I wish you well.

[Chugach]

After running through most available SOC and I was getting ready to die. Then genetic testing make it clear immunotherapy would work for me- it kicked the shit out of the PC. PSA went from 122 to undetectable and I feel great and pretty much back to normal. Talk about a Hail Mary.

Stay Strong Brother

[mine1958 in reply to Chugach]

Congrats

[Gunnershome in reply to Chugach]

That’s awesome!! What immunotherapy drug are you on?

Do you have a high Gleason?

[Chugach in reply to Gunnershome]

I’m on pembroluzimab (or Keytruda), I had a Gleason 10. It was bad. But this drug unfortunately only works for a small percentage of men with PC. Success depends on the right genetic markers. There is a trial that combines LU-177 (to help ‘unmask’ the PC) so the pembro can find it and kill it.