Men With BRCA-2 Mutation-How are you Treating/Doing?

BRCA-2 Mutation is a quite common mutation for women with negative Breast Cancers. But men with Advanced Prostate Cancer, as well as those who are about to be diagnosed, who carry this mutated Gene, it is not common. Latest statistical data from 2 studies, one said 1.2% of all Men with Prostate Cancer have this mutation. Another study indicted it was 2% of all Prostate Cancers---for those that carry the Mutated BRCA-2 Gene.

Those with this mutation, will have a short Overall Survival, is the conclusionary analysis, of the studies. It appears as just one of many Prostate Cancer Forms, and that having this mutation, kind of makes it an Orphan Disease, within the overall, of all Prostate Cancers.

I am working with Foundation One, Tapur.org, and the Levine Cancer Institute to find those men who know they have this gene mutation, and to catalog, their treatment protocols, and to get a general history of their disease progress. I suspect many on this site do not know, their mutations, and have never been Gene Mapped.

If you are one, who knows that they have the BRCA-2, get back to me please, at user name Nalakrats. And yes I am one who carries this Gene Mutation. Yet my personal protocol has it in check, for now, and we are trying to figure out why.

Nalakrats.

22 Replies

oldestnewest
  • Nalakrats, I'm glad for you & for all of us that you are avoiding that short overall survival time. And I appreciate very much that you're trying to help others who have the BRCA2 mutation.

    Neal

  • My husband had the BRCA1 mutation. R u studying that as well?

  • In the course of study and gathering info---BRCA-1 Also comes up as a companion Mutated Gene. Having one does not mean you have the other. BRCA-2 is the more deadly, especially for women---And for men it is associated with agressive Pca, and shortened survival times. So even they have similar designations, being a 1 or a 2, they are quite different---so my focus is on the BRCA-2.

    Nalakrats

  • My husband had BRCA1 with somatic p53 mutation. It was lethal.

  • Sorry to hear that. I am not familiar, with somatic p53--but will check on it--sounds like it might have been small cell. I will look up.

    Thanks,

    Nalakrats

  • Just saw this comment. Neuroendocrine cells found in bone biopsy, but he had 2 liver biopsies and they never found neuroendocrine cells and they did a lot of sampling. Only adenocarcimo found in liver.

  • Over my head what this means, about the differentiation between Liver and Bones---Interesting.

    Nalakrats

  • Did a quick look up, The p53 is typical to breast cancer, as is the BRCA's.

    So studies done on the p53, showed very low survival rates, usually 4 times worse, that a simple cancer of the breast. Since all of these cancers have something to do with the hormonal systems, be it women or men, it is interesting that Prostate Cancer does not get too much attention, when faced with the same gene mutations found in breast cancer.

    Kind of why I am trying to gather info, from those on this site, that know their mutations, and how did they, or are treating.

    Nalakrats

  • My husband was diagnosed with Gleason 9 with 8 lymph nodes positive found during RP. It was later discovered he had BRCA1 mutation. The p53 showed up during further biopsies. He surviived 4 years and overall those years had a good quality of life. He took Olaparib on and off during his treatment and both it and Radium 223 worked wonders on his bone mets. Two years in his prostate cancer went into his liver. He had docytaxel and carboplatinum for about 10 months before it stopped working. Jevtana did nothing. They tried etoposide and that didn't work either. He did Keytruda as a last ditch effort, but he only made it 2 cycles.

  • How do you find out if you have that gene? Where do you get the rest? Is brca1 also problematic?

    Bob

  • You can go to Foundation One.com. Get their 800 number and call. An advocate will walk you thru the testing---If you have had surgery within the last 10 years, they can get prostate material from the hospital, If not you will need a blood draw. Takes about 3 weeks to check 310 genes for mutations. If on Medicare--there is no out of pocket costs. If not your insurance usually participates--if ordered by a Doctor. Every plan is different. Yes BRCA-1 is problematic---but 2 is very much more so as it is so rare---about 1.2-2.0% of all prostate cancers have this mutation.

    And we get more info and help from Breast Cancer Research, then Prostate Research. BRCA---stands for Breast Cancer.

    Nalakrats

  • Thanks. If one has those genes are they always passed down to progeny? My father lived til 94 and died naturally. I don't know if any of my ancestors died from any kind of cancer. I know my grandfather did not.

  • How about, My father is from a family of 5 brothers, my mother had one. I have 18 First Cousins between 65-73 years old, and 17 are male.

    And no one in my family has ever had cancer--including all women.

    I am the First---so go figure--its an enigma, this disease.

  • Thanks Nal. I've added this to my task list. I was imagining that this would be expensive and not approved by insurance but now that I know it is not I will pick up the phone. You are doing your part to push the science.

  • After you have a minute check Tapur.org---pull that up read the patient and the doctor info---and you can see how this organization can work behind the gene mutation analysis, relative to future new treatments, drugs, and clinical trials around the world. Of course when you read about Tapur, we are talking late stage treatments, but some things are being moved up, so you are not on your last leg before certain treatments are tried.

    Nalakrats

  • I did some more research. I was curious about whether, and how long, prostate biopsy tissue was preserved: cancer.org/treatment/unders...

    I wonder if FoundationOne could work from biopsy tissue. I haven't called them yet.

  • They can work from prostate material if removed---as it is typically kept for 10 years. Biopsy material went on slides--so I am not sure you would have available safe a d preserved material. If you are not capable of providing prostate material---they can do it from a blood sample[Heme]. Call---they are a library of knowledge.

    Nalakrats

  • My husband has BRCA 2. He is a 12 1/2 year survivor. Currently he is taking xtandi, and next week we will see if it is working. I will write more at a later date.

  • It would be interesting to know after DX---what was done, and what prior drugs and treatments he underwent. This is key to understand how to treat men with BRCA-2---So what has worked for your husband over the last 12 years, is important to know including vacations from drugs/treatments---ever get to PSA of undetectable and for how long---Also any supplements that might have been used.

    The fact that Xtandi is now being employed, usually means initial front line Hormone Antagonists have stopped working. The back up to Xtandi would be Zytiga. Curious how old was your Husband upon DX.

    Appreciate if you can fill in some of my questions above---because the survival rate is very low for BRCA-2, and your Husband has far exceeded it.

    Nalakrats

  • My husband was diagnosed in 2004 at the age of 58. He had the RP Sept 2003. Seminal Vesicles involvement with a Gleason 9. He did a watch and wait while PSA stayed around .1 for 2 1/2 years. In 2007 he had 35 radiation treatments. Three months after radiation his psa was .2. Started intermittent hormone therapy (Lupron and Casodex) from 10/2007 until 9/2011. Testosterone has been below 1 ever since the hormone treatments. He was then approved for provenge which he received in October/November 2011. Went to Mayo clinic in Nov 2012 for the C-11 Choline pet scan which showed a metastasis on the L5 lumber spine on another lesion in the right ilium on the posterior iliac crest and involvement in the aortocaval lymph nodes. PSA at that time was 4.2. He began Zytiga with prednisone in Jan of 2013. PSA went to .1 and stayed there until June 2014 when it began to rise. After 3 1/2 years stopped Zytiga and started on xtandi in Jan 2017. He was tested for the BRCA2 gene mutation when our youngest daughter found out she had the gene when she developed breast cancer at 35. When she found she had the gene, we were told one of her parents had to carry the gene also. I write this all matter-of-factly, but we all know this is a rocky and difficult journey. When xtandi fails, our doctor will try to get him on a Parp Inhibitor "Oleparib" which up until now has only been approved for ovarian cancer patients with the BRCA mutation.

  • Craigslife, first thanks for the thorough report. So far you have 13 years with your husband and that is great. Here is something of interest. Yes Oleparib is designated for BRCA-2. In my Gene mapping, BRCA-2 was determined. Now Oleparib it is not approved for prostate cancer, but the Foundation One group that did my mapping, has indicated this drug for me if and when I need it. At present my PSA is undetectable, so I am doing research, for future use. *So if you live in a RIGHT TO USE State, You can make application with the Dept of State, of that State to have use of that Drug. Each State that is a Right To Use State has different rules and forms to fill out. Many people do not know about right to use states. There are I believe 22 or 23 States that are Right To Use States. I live in N.C. and my State is a Right to Use State. I know Florida is, because I go there for most of the winter.

    If you live in the right State, and even there are high costs, and even if you do not live in a right to use State, there is a non-profit organization: Tapur. It was founded by a large group of independent Oncologists, and you can go to Tapur.org. and read the Patient, the Doctor, and other segments of how Tapur works on-line. Basically for now you would have one of your Doctors Register Himself/Herself, and your Husband as Patient, and they will provide any drug any where in the world free of charge. The drug will travel to the Doctor registered, and the Doctor would administer. If it is an Immunology drug, there are 4 centers listed that would do the application of the immunology sequencing procedures/drugs. Drugs do not have to be FDA approved, and can be as meager as a drug that has not left the lab yet, but has done well in, in vitro experiments, without Human trials.

    So in summary you have 1] the right to use state possibility 2] the Tapur non profit to obtain Oleparib for prostate cancer, or any other drug. I have now heard of 2 other drugs making their way out that are also for BRCA-2, and are Parb inhibitors also.

    Hope my information in return for your information helps. Check out my info above.

    Nalakrats

  • Did your husband have RP? Did he have to take Casodex and Lupron?

You may also like...