Entrectinib trial

[Sherryross]

Anyone on this? I am starting it very soon They are getting me settled in with all the pre-testing etc. before I begin.

[thomas62]

Hi Sherry,

What is the Electrinib trial?

Gwen xx

[Sherryross in reply to thomas62]

[e-mail]

For advanced stages of ovarian cancer that have the NTRK gene rearrangement, which I have.

[Hidden]

Did the testing include genetic testing? Or have you been tested for the BRCA mutation previously. If you are BRCA Positive, that fact is now being used by many doctors to determine the best treatment to begin with if this is for Ovarian Cancer.

If you haven't been tested yet, you should ask the doctor about any impact it may have on the trial drugs efficacy. At least BRCA status would be one more factor for them to know concerning the patients receiving it to see if there is any difference between those who are positive vs. the women who are negative.

[Sherryross in reply to Hidden]

Had many tests I am brca 1 and 2 negative

[Sherryross in reply to Sherryross]

Seems brca-positive has a variety of choices compared to brca negative

[Sherryross in reply to Sherryross]

Foundation One did my genomic testing and sent me the packet after my surgery.

[Hidden]

That's good to know. But more important that the trial people know.

My wife was confirmed with Epithelial Ovarian cancer on a Monday. To the best of my knowledge, no genetic testing was done, even just for BRCA 1 and 2, which seems to be the norm unless the patient is in one of the higher level cancer hospitals.

If the testing was done for Sandy, I should have been notified, so I could let our three children know.

All I got after Sandy passed away on Friday morning, less than four days after being told it was OvCa, she was gone. Just three days after her first Chemo treatment.

The United States medical system, guided or driven by the Food and Drug Administration, the American Medical Association, and the insurance company guidelines is letting American women down when it comes to Ovarian Cancer Awareness.

Recent surveys still show that over half the adult women in the U S believe their Pap Smear being negative meant they were free of any Gynecological cancer.

Many registered nurses in the U S don't even know that after a four year degree in Nursing or the shorter technical/nursing school certification for RN.

Glad to know your testing was done so soon after your first diagnosis and even before surgery.

Dennis

[Sherryross in reply to Hidden]

That is so sad Dennis. First of all, I had to ask for the BRCA test and second of all, I found this clinical trial all by myself just looking through my 30 page genomic workup.I went to my oncologist and said look I have this genetic issue and I should be a candidate for this drug. He checked, called the cancer foundation doing the trial and I was right. I also found that this drug has been around for five years. Meanwhile I am Advanced stage 4 and it is on the move because all the other standard drugs they gave me did nothing. So you are absolutely correct we are on our own, for the most part.

[Hidden in reply to Sherryross]

Yes, women have to become their own advocate, especially when it comes to Gynecological cancers.

I'm so glad I was with Sandy when the first words out of her Oncologist's mouth were Colonoscopy and Endoscope. Two invasive procedures that would have been a waste of time, but he'd be paid to do -needlessly. A total waste of time considering the numerous CT scans that showed no mass.

Grrrr!

Hoping the best for you in your battle. Glad you demanded the BRCA testing and did the research to find the clinical trial. I have an OvCa connection here in Louisiana who had to search to find the only treatment that helped stop her cancer through a clinical trial.

[Sherryross in reply to Hidden]

God bless you Dennis. I lost my wonderful husband to cancer many years ago and it still hurts, always will. I understand your pain and frustration

[gwyn64]

Hi sherry

Did u pay for the genome testing yourself and who requested tissue sample from your hospital. How long did it take to get the results.

Thanks. Gwen xxx

[Sherryross in reply to gwyn64]

If you are already diagnosed with ovarian cancer then the brca tests are free. If you haven't been diagnosed they are only $300 well worth saving your life. My oncological surgeon had the testing done. When she was operating on me she cut off a piece of the cancerous tumor and that's what went to the lab They send it to a lab and you receive the results in about a month

[Sherryross in reply to Sherryross]

The brca test takes 5 minutes you spit in a cup till you fill it to a particular line and they send it off.

[Sherryross]

Genetic testing must be done. That is where all the clinical trials begin. Most oncologists give everyone the same thing and when that stops working they move on to something else. Most of them don't investigate into all the issues with your cancerous cells. There are clinical trials specifically designed for your genetic makeup, that is , your genetic "disorders". Why go through chemotherapy over and over and over if there is a possible trial out there that lines up with your genomic "disorders." I have a "gene rearrangement" which kind of means the gene is moving in the wrong direction, causing tumors to grow! The purpose of this trial drug is get it back in "sync", where as, stop the tumors from growing. This is targeted therapy or whatever you want to call it but it is only going after the cancerous cells and it is leaving all my good cells as they are. Which explains why I feel great. No damage to the "goodies" finally. Side effect is I feel like I had a margarita. Doesn't that beat all the other feelings you get from taxol avastin doxil carboplatin I could go on and on. None of them ever gave me a remission longer than a few months. So wish me luck my oncologist is extremely excited about this too. I am on week 3! Not doing any blood work or a pet scan till after the holidays to see what's going on in there! These are two pills in the morning by the way, my port is finally get a break!!!

[Hidden in reply to Sherryross]

Great to hear you seem to be doing so well with it and I hope this shows up when you do the tests too.

I'm not eligible for the trial - and indeed hadn't heard of it until I saw your post - but I have a variation of unknown significance on NTRK1 and rearrangement on NTRK3, so I hope the trial may end up providing pointers for future options for me.

Currently on Niraparib and feeling pretty good. xx

[January-2016-UK in reply to Hidden]

Were you tested through UCL? Good that you're feeling good on Niraparib.

[Hidden in reply to January-2016-UK]

yes - as part of prep for a clinical trial

[Sherryross in reply to Hidden]

Happy to hear you are doing well on the neuropathy rib. If this doesn't work neuropathy rib will be next for me. Good luck to both of us!

[Sherryross in reply to Sherryross]

Ha ha, Niraparib. I didnt look before I sent it.

[Sherryross in reply to Sherryross]

This drug is amazing! Still on it...my fibromyalgia has completely disappeared I have suffered with it my whole life. I am on my way to the gym. Ca-125 dropped 400 points! Having my 2nd scan soon. Tumors are slowly shrinking. Will NEVER have chemo again. Having port removed soon. Considering how great I feel I would choose death over chemotherapy. I couldn't handle it. If this stops working I will just move on to another clinical trial that does not have chemotherapy included in it and whatever it takes. For advanced ovarian cancer chemotherapy is only a quick fix for the majority of us