Hello,
My family and I visited Dana Farber cancer institute in Boston this week.
They suggested genetic testing. Can anyone share their experience? They will be using a tissue sample from 2011 when I was diagnosed.
Also, we were interested in clinical trials of PARP inhibitors. Unfortunately there are no phase 2/3 trials open, only phase 1.
Dana Farber is wonderful and the ppl there are caring, it makes going through this a little easier. I recommend them if you're on the east coast.
our onc. at the VA just sent a tissue sample from a 12-year-old biopsy for genetic testing and it came back negative...so, we didn't have to investigate beyond that. but, i have a cousin who recently passed on from ovarian cancer who had been treated at U. of Penn with PARP inhibitors for a year or two before her cancer claimed her a year ago. as with many ovarian cancers, though, she was diagnosed way too late.
A lot of mutations can occur during the 12 years of treatment since that tissue sample was taken. Often, the mutations occur during treatment and that's a major cause of resistance which develops over time. I would recommend you ask your doctor about that and consider having another biopsy taken. That's my opinion.
is that an opinion backed by fact? or just your opinion? just curious, because more than one oncologist told him not to bother...but, they based THAT on the fact that he had absolutely NO response to paclitaxel...not one little bit...and, then of course, the genetic testing was negative.
No, not just my opinion. This a fairly complicated aspect of prostate cancer so I am a bit hesitant to go into it too deeply due to my limited knowledge. My understanding is that there a lot of energy being focused on this issue of mutations in PCa.
Someone who knows more can correct me if I'm wrong, but this is my understanding. Whether you do genetic testing using a blood sample or a tissue biopsy depends on what you are looking for. Certain mutations such as BRCA1, BRCA2 and more recently ARV-7 can be detected with a blood sample, however mutations that cause neuroendocrine characteristics can only be seen by looking at the cells under the microscope. These neuroendocrine or "small cell" characteristics are rare at diagnosis, but more commonly develop during Androgen Deprivation therapy. They do not express the androgen receptor so are not responsive to therapies that target the AR. They often only respond to Platinum-based chemotherapies such as Carboplatin.
Here's an article on the subject by someone who is doing research in this area.
oncotherapynetwork.com/geni...
well, he had carboplatin, also...before the issue of PARP inhibitors hit the news...with no results. the genetic testing took 6 weeks to run through his entire genome...with no results...at the NIH.
This is the way I understand it as well, Though I do know there are some blood markers for nuerondicrine..Tuesday I am going to go in to try for a clinical trial, I had genetic testing in Sept of 2016, They will want another one, with the likelihood that my cancer has mutated since then.
Your right, Chromogranin A is a marker for neuroendocrine cells. It's a blood test. I think there are others, but they don't have very high specificity.
I DON'T UNDERSTAND why you would look for a clinical trail. most may or may not provide treatment. why risk being in the placebo group?
I agree with that thought, I would never go for a phase 1 at this stage in my disease ,however the trial I am going for is open label (you know what you are getting) and quite honestly I am out of options and looking for a way to get off chemo. I have some bone pain and one of the meds is rad223 that relieves bone pain. Also if no one did clinical trials we would not have any progress in finding a cure for this disease. At this point I would never allow for the chance I was only getting the placebo.
Thanks for your reply. Good luck with your trial. Which one is it?
It was the one with Keytruda and Radium, MO called yesterday afternoon and said My Lymph nodes were to big , but I could have a repeat ct, So I will, but in reality there is little chance I will get in
I'd like to put in a good word for clinical trials.
First, whether or not they work, they help advance the science and that helps the rest of the community. Who knows, something might be discovered in a trial that won't cure me but might cure one of my children 25 years from now, or one of my grandchildren 50 years from now - not to mention lots of other fine folks like your children and grandchildren 
Second, even if a particular patient is placed in a placebo group, if the treatment works, he might get early access to the treatment. That is a feature of some clinical trials - if the treatment works, the placebo patients will get access to the drug without waiting for FDA approval.
Third, you might just be in the treatment group. In some trials they sweeten the incentives by assigning two people to the treatment group for every one in the placebo group.
Fourth, and this may not apply to someone being treated at Dana Farber, which already has top doctors, patients in clinical trials often get access to really good doctors, sometimes get more extensive medical testing, often get expert follow-up, and sometimes get more face time with their doctors.
Alan
Surely clinical trials are very, very important?
I joined the Stampede trial here in the UK, and boy, am I glad I did.
The results of the trial so far have been fantastic. All of us on the Abiraterone/ Zoladex arm are doing remarkably well. In my case it’s 6 years since diagnosis, PSA over 500, Gleason 7 and 7major bone Mets. PSA is currently <0.1.
The placebo element of this trial was stopped very early on as the Abiraterone was a clear game changer and it would have been unethical to carry on.
Good luck all.
Martin
You don't take in addition Metformin, is that correct?
Rich
Hi Rich
No, just Zoladex and Abiraterone with 5mg Prednisone. The results here in the UK have been outstanding.
Cheers
Martin
I think I will be adding Zytiga to Lupron this month; however, I believe the doctor is going to prescribe 10 mg. of Prednisone. Did your doctor start you off with 5 mg. of Prednisone?
Rich
my husband was started off with 10 mg...5 mgs. every 12 hours.
Thank you for the information.
Rich
We just met with our "uber-oncologist" at UCSF -- Dr. Eric Small. He mentioned PARP inhibitor stuff too. My husband had his pathology tissues tested and they were negative but supposedly there is also a blood test, which will get ordered sometime soon. It seems like this is where things are going. Watch also for a trial using lutetium, currently completing phase I in Germany/Europe, and supposedly there is an effort to get FDA approval for Phase II here . . . soon?
1. I just recieved the color.com genetic test (saliva) for APC, ATM, BAP1, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4*, CDKN2A (p14ARF),
CDKN2A (p16INK4a), CHEK2, EPCAM*, GREM1*, MITF*, MLH1, MSH2, MSH6, MUTYH, NBN,
PALB2, PMS2**, POLD1*, POLE*, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53
2. And also the Guardant Health 360 genetic test (blood draw)
The Guardant Health 360 genetic test found a mutation that is apparently informing further diagnostic and treatment decisions on my prostate cancer.
3. I am told that prostate cancer continues to mutate during the course of the disease. So it would seem that fresh samples will always be superior to older samples. How could it not be so?
While under the care of Dr. Charles "Snuffy" Myers I had 3 Guardant360 liquid biopsies and the results clearly showed genetic defect changes over time.
Some results are actionable and some are not. The first result indicated an ATM defect, so Snuffy prescribed Lynparza, a PARP inhibitor. I took it for about 9 months and then it was no longer effective. In most recent Guardant360 ordered by Dr. Oliver Sartor, the ATM defect is gone.
Best wishes. Never Give In.
Did Medicare pay for the Guardant 360 test?
Rich
I would hesitate to second guess any advice from Dana Farber Institute - one of the world's leading cancer centers. You could call them and ask for more information about the benefits and risks of using a six year old tissue sample for their genetic test. Unfortunately however, the scientific answer is likely to be highly technical and very difficult to understand.
To my knowledge, there aren't yet many prostate cancer treatments (one? two? three? I think it's in that neighborhood) for which genetic testing provides key information about whether the treatment can work. It may be that the specific "alleles" (DNA variations) that they are looking for can be determined in older tissue. In fact, sometimes what must be tested is not mutations at all, but simply genetic variations that the patient has from birth that determine whether or not a treatment might work. Genetic variation is common. If your father had blue eyes or blond hair, is tall, has dark skin, etc., and your mother has different characteristics, you might get genes from either parent and your brother might very well get a different set. It might be those kinds of gene variations that the Dana Farber docs were looking for.
Alan
well, i've posted this before, but i will post it again. when my husband was first diagnosed 12 years ago we scurried up to Dana Farber to try to qualify for the intensive high-dose upfront Docetaxel clinical trial. they required a visit with clinicians before entering the research phase.
550 bucks later, the clinicians there said...just take the Casodex and Lupron until something better comes along....not, take the casodex and lupron AND enter the high dose docetaxel trial...they poo-pooed the high dose docetaxel. at that time, they were hoping that a new adjunctive colon cancer chemo...i forget the name...would stop mets once it hit the market. it was a total failure once it hit the market. i hate to sound negative, but i told my husband afterward that i wanted to review the stock portfolios of every ''expert'' we would see after that.
See my recent post in a Keytruda thread about my husband's great response after genetic testing identified MSI-H in the tumor.
His oncologist (Fox Chase cancer center) had sent a recent biopsy of lymph node metastasis to Caris Molecular Intelligence. Our insurance did cover the test. I also want to emphasize how critical it is to get a fairly recent test of the tumor itself.
Get this: my husband tested negative for BRCA1/2 in a blood test when initially diagnosed three years ago.
BUT, his biopsy came back positive for BRCA1. (So if Keytruda fails, a PARP inhibitor is indicated, which would not be the case if he hadn't had the second test.)
Evolution, guys. (Well, sort of.)
COLOR GENETIC TESTING 
When is genetic testing done?
Genetic counseling & testing
Genetic testing 
Genetic testing 
