Free Genetic Testing Promise Trial - Advanced Prostate...

Advanced Prostate Cancer

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Free Genetic Testing Promise Trial

Mgtd profile image
Mgtd
21 Replies

When I was diagnosed with this cancer and looked into this forum for guidance the topic of genetic testing and its potential applications sounded like something I should investigate since I had no info on my biological father’s medical history and my mom died of cervical cancer.

My local urologist wanted nothing to do with this type of testing. He either lacked knowledge or did not want the responsibility of any genetic counseling so I was on my own.

I found a free genetic testing trial called PROMISE that would pay for it and do any genetic counseling if warranted. So I enrolled and did the testing. Super easy and really a professional experience.

Here is some info if you are interested in the free genetic trial.. I still get their newsletter.

prostatecancerpromise.org/h...

prostatecancerpromise.org/w...

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Mgtd profile image
Mgtd
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21 Replies
AlvinSD profile image
AlvinSD

Thank you for posting this. I did the PROMISE study as well. I encourage everyone I know with PC to sign up for it. The process was super easy and I got the results back quickly.

dhccpa profile image
dhccpa in reply toAlvinSD

Can anyone do it?

Mgtd profile image
Mgtd in reply todhccpa

yes anyone can apply and it is free and admission is simply a matter of completing the application.

The other is a survey applicable to prior and existing service members as who were aircrew members in the armed forces.

I included this to hopefully gain some exposure for this effort. If you go to the promise page you will find other on going research opportunities that may interest you.

dhccpa profile image
dhccpa in reply toMgtd

Thank you.

Mgtd profile image
Mgtd in reply todhccpa

I forgot to add that there are two types of genetic tests. The one we did in Promise only looked for genetic inherited genes. Those will NOT change. So the test probably does not need to be redone.

The second test actually tells you about the genetic makeup of the cancer. That can change over time.

dhccpa profile image
dhccpa in reply toMgtd

Yes, I suspect you're correct. I guess I'm one and done on that, then.

Haven't had my Mets biopsied yet.

Mgtd profile image
Mgtd in reply todhccpa

Now that maybe critical info to know.

dhccpa profile image
dhccpa in reply toMgtd

Yes. I've asked but my local docs seem clueless about biopsying a bone tumor. I guess it is tricky, especially in vertebrae.

CAMPSOUPS profile image
CAMPSOUPS in reply todhccpa

I dont know my friend. IMHO unless in your case there is/are clear indicators that it would possibly benifit you then maybe not worth the pain inflicted with bone bipsies. Your PC history and yae and nay responses to treatments over the years are usually indicators of the treatment(s) you need. Knowledge from a bone biopsy I think ( IMHO ) would rarely change or direct a particular treatment. Maybe BBiopsy best for trials?

dhccpa profile image
dhccpa

I did this three years ago. I wonder if they'll do another free one. Didn't change anything at the time.

Mgtd profile image
Mgtd in reply todhccpa

Can not hurt to ask. All they can say is no.

dhccpa profile image
dhccpa in reply toMgtd

Yes, will do.

j-o-h-n profile image
j-o-h-n

SAMPLE ON-LINE APPLICATION

Thank you for your interest in the PROMISE Registry.

Color is collaborating with the PROMISE Registry, a research study to better understand how inherited genetic mutations and other health factors affect prostate cancer. If you decide to participate in the PROMISE registry you’ll get a free clinical-grade genetic test from Color.

For anyone with prostate cancer, there are often more questions than answers. Your DNA may be the key to unlocking some of these answers for you and your family.

The goal of this study is to help researchers understand the mutations that can lead to prostate cancer in your family. It does not provide or offer any treatment for prostate cancer.

Participating in this study can help you understand the role your DNA plays in your diagnosis. It can help you and your doctor decide if new treatments or research opportunities make sense for you.

To understand whether you're eligible for the study, we will ask you some questions. If you’re eligible, you'll be able to enroll in the study.

If you’re eligible and enroll in the study:

Color will send you a hereditary genetic test kit to provide a saliva sample.

Color will test your saliva sample, and send you personalized genetic results at no cost to you. Color’s lab is CAP-accredited and CLIA-certified to ensure the integrity of the results.

Your results will help the PROMISE Registry researchers understand the genetic mutations that lead to prostate cancer.

Learn more about the PROMISE registry at prostatecancerpromise.org.

I HAVE NOT ENROLLED YET!

Good Luck, Good Health and Good Humor.

j-o-h-n

Mgtd profile image
Mgtd

Thanks for posting that.

Sunnysailor profile image
Sunnysailor

Thanks for posting. We had somatic genetic testing and it was very helpful. We found out his tumor of origin has a SPOP mutation. This has led us to an oncologist that is studying it. He has not had germline. His doctor plans to order on next appointment.

mrscruffy profile image
mrscruffy

I used it early on and revealed I am positive for BRCA2. brother, sister, nieces and nephews all tested. Brother was only one BRCA2 positive but he doesnt have cancer. Everyone else was negative

kreg001 profile image
kreg001

I did PROMISE. Results were no genetic predilections. So, my cancer is probably environmental. As I’m a chemist who has worked with many carcinogenic substances I guess I shouldn’t be surprised. Just grateful I’ve not passed bad genes to my children and grand children.

Mgtd profile image
Mgtd in reply tokreg001

Remember there are two sides to the gene pool. I suggested my offspring get tested also.

dentaltwin profile image
dentaltwin

I did the Promise/Color test. The only thing they found was BARD-1, a "mutation of uncertain significance". Otherwise, no genes known to be associated with any cancer. However, I and both my brothers and my dad had prostate cancer; my dad also had lung cancer; my mom died of pancreatic cancer (and both of her sisters died at age 42 of fallopian tube cancer). The reason I bring this up is that genetic testing is still very much in its infancy, and there may be many more mutations (and combinations of mutations) yet to be discovered. So while finding a mutation associated with cancer is a signal, not finding one (in my opinion) is no reassurance that you have no genetic risk.

I had my genetic test redone at MSKCC, with the same finding. I was told that I should check back in in a year or two, as they may be able to test for additional mutations.

kreg001 profile image
kreg001

🙏

Meshel48 profile image
Meshel48

My husband after doing Zytiga ,Prednisone , Lupron , Xgeva,Provenge, 3 doses of Taxotere so he could get Pluvicto. Oncologist changed due to insurance we were USC Hoag Keck and now Hoag Oncology . Pluvicto was not successful as far as they could tell from scans so they did Genetic testing since my husbands Mother had ovarian caner , her brother brother died of colon cancer at a early age , sister breast cancer, and nephew brain cancer . He went Relugolix 120 mg instead of Lupron because of the side effects and PSA and testosterone was staying low . Genetic test came back BRCA2 but he didn't start on Lynparza until his number started to go up again so now he take lyparza 4tabs twice a day blood levels are still ok but if they get to low he will have to go off for a month and maybe go back on at a lower dose. right now his PSA is 2.6 when he started 5.9. Diagnosed 5/1/2021 Stage 4 prostate cancer bone metastases burst T-5 fracture PSA 3400 . So new oc thinks he is in the 10% Lynparza works on but only if he can continue to take it. Sorry for such a lengthy story

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