My husband just had genetic testing done & he has the BRCA2 mutation. All his MO told us about was needing to do monthly self breast exams (MO also did one at visit), needs yearly skin exams & higher risk for pancreatic cancer. She didn't tell us anything about PARP inhibitors, as some of you have mentioned. Can someone explain what that is and if it can help DH? He had a RP in 2014, RT with 6 months of ADT 13 months later when PSA went up. Then 13 months later PSA started to rise leading to fast PSA doubling and then Axumin showed spread to a pelvic lymph node (which can't have RT again since it is inside the same area that was already done-told it would cause too much damage). Started ADT for 4 months, then decided to have orchiectomy in Jan. of this year (since MO said he'd be on ADT the rest of his life). You can see his full history in profile. This April visit PSA 0.01 & testosterone <1.0! Should MO have talked/explained about PARP inhibitors at visit when she told us he has BRCA2?
Husband has the BRCA2 mutation, does ... - Advanced Prostate...
Husband has the BRCA2 mutation, does this change treatments?
Treatment with PARP inhibitors could offer a clinical advantage to patients with cancers having the BCRA2 mutation.
ncbi.nlm.nih.gov/pubmed/285...
There are clinical trials of PARP inhibitors:
clinicaltrials.gov/ct2/resu...
So are PARP inhibitors only available through clinical trials at the present?
I believe that for patients with prostate cancer they are only available in clinical trials. Some of them have been approved for ovarian cancer , fallopian tube and peritoneal cancer. I think the insurance companies will not pay if they are use off label.
Thank you so much for your information!
Tango received 10 hits for "parp inhibitors", but I notice that there are 24 trials for <prostate olaparib>
clinicaltrials.gov/ct2/resu...
Some papers:
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pubmed/298...
ncbi.nlm.nih.gov/pmc/articl...
-Patrick
It appears these trials are all for castration-resistant prostate cancer, which my husband is not yet, he's still responding to ADT or in his case orchiectomy that he had back in Jan. Thanks for the info!!
The first trial of a drug is often on CRPC cases. Those men have far fewer options, so accrual is not a problem. If any benefit is shown, the FDA will fast-track.
For the drug company, it's a foot in the door. The push is then for earlier use - even before there are mets.
-Patrick
I said "she didn't tell us anything about PARP inhibitors", I'm not sure she doesn't know about them. She is the MO for a very large group that mostly deals with prostate cancer, she just doesn't seem to give a lot of info to you unless you ask, which we DO NOT like! I've looked/asked around and this seems to be the leading group for prostate cancer in our area, so we've stuck with her. For an example, there is only one place in the whole state that offers the Axumin scan and the hospital said she was the first to order it for her patients and by far is the Dr. that orders it the most. Maybe we will have more choices when DH can retires in 2 1/2 years and we move to Ocala, FL. We will ask MO about PARP at next visit in July, just trying to get info from all of you before the visit. Thanks!!
"unless you ask, which we DO NOT like"
She is not God..... so ask, if she gives you the cold shoulder tell her you know me and that will scare the siht out of her. Be assertive/aggressive like my ex-wife. YELL!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/16/2019 5:06 PM DST
Believe me I am, that's why she gives me the cold shoulder (I don't think she likes me because I question her on things)! If I thought we could find a better MO with a better group, believe me, we would leave, but she seems to be the best MO that specializes in PC. Don't like her bedside manner, but I think she's very good at what she does... just wish she was a little more NOT "standard of care" driven!!
Why didn't you bring it up?
I just started seeing this on here AFTER our visit.
I am very aggressive with everything I know about & understand, she doesn't always like it, but I do come in with a "list" at each visit. I try to study and research as much as I can, but I'm not in the medical field and sometimes it's hard to get all the info I need to know about this beast!! It's very overwhelming to try and understand everything I need to know, but I'm doing my best.
Here are some clinical trials you can inquire about:
pcnrv.blogspot.com/2018/02/...
Thank you very much!
I'm just a 72yo bloke with Pca, not a doctor, but am still alive 9 years after diagnosis, so I have seen how some other men have fared with Pca, and one had Pca that mutated quite a bit, and RP, ADT, IMRT and chemo all failed to hold down his Pca and he was found to be Brca2 positive so parp inhibitors were tried and Psa zoomed up from 40 to 400 and other mets appeared in his liver, and last lime I spoke to him he sounded like he was struggling, and then he stopped answering my calls and I think may have died. The parp stuff just didn't work like everything else, and he only got 3 years after diagnosis.
The trouble with Pca is that it has different varieties, and all of it mutates to new varieties, many of which are promoted by whatever treatment is used to combat it.
I have not see too many positive accounts of using parp inhibitors, maybe results of trials are out there somewhere.
The problem my friend had was that Psa rose fast, and his condition diminished faster than any time if would take to arrange and apply any remedy.
I had dad die at 60, melanoma, His mother died of Oa, one of my sisters died of Oa at 60, other escaped Brca after double mastectomy. I would be highly likely to be Brca2 positive. I am presently having Lu177 + enzalutamide and then we wait and see what happens but I will not rest, and will seek DNA analysis and just maybe PARP inhibitors might help me at least kill some Pca cells. Usually any single type of treatment cannot work against the mutant cells that grow to defy that treatment. Prepare for battle, at a huge expense.
Patrick Turner.
Gung ho... Way to go...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/16/2019 5:15 PM DST
SJC2, I'm BRCA2 positive and, having been diagnosed in 2013 as stage 4, Gleason 9, have had the opportunity to try out a whole bunch of treatments, each of which ultimately (and predictably) failed. However . . . one of the most effective by far was a PARP inhibitor, which IS available outside the clinical trial setting. Olaparib (brand name Lynparza) was fast-tracked by the FDA specifically for patients who are BRCA positive and who have had previous treatments fail. I started it in June of 2017 and my cancer was undetectable for a year. It does, however, have a deleterious effect on the bone marrow, so a year later a took a 6 month holiday to allow recuperation. When my PSA began to rise, I resumed taking it, but my cancer had become resistant, so after dropping for a couple of months PSA began to rise again and I had to discontinue. Last summer I had robotic laparoscopic surgery to remove the lymph nodes shown by a PET scan to be the only discernible locations of the cancer, and gratefully have been undetectable since. The cancer will come back eventually, but this game is all about buying additional time, and both olaparib and surgery bought me a lot. Being BRCA-positive DOES significantly change the treatment plan (for example, if/when he has chemo he should have a platinum-based element such as carboplatin) and you very much need an MO who understands and appreciates the difference.
Best of luck to you & your hubby! You've come to the right site for information that will help make you the critical consumer you need to be.
Wow, thank you for all the info and I'm so happy that you are undetectable now! Since my husband is not CR yet, I assume that's why his MO didn't mention anything about PARP inhibitors at our last appt. when she talked to us about him being BRCA2. She likes to deal with what's happening now, not what may be down the road, when he's responding well to what ever treatment he's having. I still ask lots of questions about the "what's ahead" and I will ask about this at his visit the first of July.
Best of luck to you in this battle with the beast!!
I expect we're a lot alike - even when things are working now, I know there may come a time when we have to move on to something else, and I want to know what the options are going to be. Gives me a sense of security, I guess. But the best news is, the longer a current treatment works, the greater the number of options that will be available when it ultimately fails!
From one BRCA2+ brother to another, thank you for your very useful post.
While I was diagnosed stage 4 metastatic Gleason 10 PC in June 2018 with pelvic bone mets, it wasn't until several months later when I had genetic testing and found I was BRCA2+. In addition to Eligard and Xgeva, I am now on Olaparib via off-label non-clinical trial use for the past two months. I have also just completed Provenge immunotherapy treatment as of last week.
Those of is who are BRCA2+ know we have an uphill battle, and need to hit it hard. Knowledge is power.
You're doing the right stuff, but I'd have you think about one more thing (and it's something no one wants to hear): doing chemo sooner rather than later. There's evidence that particularly for BRCA+ patients, early chemo using a platinum-based cocktail (Carboplatin plus docetaxel in my case) can have a positive and reasonably long-lasting effect. Granted, chemo isn't a picnic, but for me it wasn't nearly as bad as I was fearing it might be. Something to ask your doc about if/when the effects of olaparib seem to be diminishing, possibly.
Yes, chemo has not been on the top of my list, but I know it may very well be a future course of treatment for me. I hope my current course of treatment will be beneficial for a while before I need to consider chemo. Glad to hear that it wasn't so bad for you.
Hope you are one of those that Provenge works for. Still in my future. My doc agreed to genetic testing last Tuesday with a snap of the fingers. Don't fret about chemo if it comes to that. Most of us would do it again without a second thought if we had to. Had an advocate (lawyer) for wife SSDI. They are limited by law to percentage. Found it very reasonable. Get one who only does SSDI. Just a glance at your profile and I think of Stephen Colbert, or is that Clark Kent. Good luck.
Yes, he should be doing genetic treatments like PARP inhibitors. I just had this genetic testing done and showed no mutations so I am off on a different path.
Does anyone know if being BRCA2+ means he will become CRPC sooner, than if he wasn't BRCA+? Of course I know everyone is different and there are no set rules on outcomes, but just wondering if it seems to be more common to become CR sooner with this mutation.
As with breast cancer, inherited BRCA mutations are associated with a poorer outcome.
I can't say how this affects time to CRPC. The old rule-of-thumb for basic ADT is that resistance occurs for most within 18-24 months. i.e. including non-BRCA cases. So CRPC comes up fast for a lot of men in any case. Of course, the new combinations of drugs improve on that somewhat.
With PARP inhibitors, the situation is much more hopeful for BRCA men (& women). The drugs take advantage of a basic weakness of BRCA+ by removing the essential repair mechanism that allows the cancer cells to remain viable.
-Patrick
We are praying it takes longer to become CRPC since he still has 2 years and 9 months before he can retire. Working full time is getting a little harder on him and since he travels it's even harder getting the rest he needs. We are hoping surgical CR, as he did, will last a bit longer than taking ADT's, but we know it does the same thing, just not having to pump drugs into his body to get there. Thanks for all your help and I wish you the best in this battle!
You wish you were fishing and I wish I was eating ice cream ....
You are a God sent here on this sight... but don't get a big head now.
You have 5 degrees but I have 98.6 of them...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/16/2019 5:13 PM DST
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