Hello my dear OC co-pilots! I'm suppose to finish my 6th course of frontline Chemotherapy mid- April and currently my oncologist is pushing me to get tested for HRD (Homologous Recombination Deficiency) in order to assign follow up PARP inhibitor as a maintenance therapy. This HRD test is done via biopsy and it was not included in genetic testing of samples taken during my debulking surgery. (so not looking forward to having another biopsy!)
I was wondering if anyone else was subjected to… read more
I’m sorry to hear that some people have had bad experiences with their oncologists. Mine is terrific! If I didn’t like him, I would find a new oncologist. It’s very important to feel that your Dr is treating you with respect.
Belovedsam, I feel that pharma is a totally unethical industry, and my husband agrees with me. A big part of the problem is that unlike some of the more advanced countries, the US lacks government control of prescription drug prices. Thank a Republican!
I just had to mention that when I finished Frontline treatment in December 2020, I was supposed to start the Zejula at that time—and at that time it was $4500 a month!
I have to say that my heart just sinks to see the escalation in the cost of this drug for women who might perhaps benefit from it, it’s truly an atrocity.
Answer to my question re genetic testing: according to my first genetic tests ordered by my previous oncologist I am negative for ALL of pathogenic mutations, deletions, duplications , including BRCA1/2 and HRD. I am "absolutely healthy" based on my genetic testing results and why I am continue having cancers is a big puzzle. It's just a fact and I am already dealing and living with that fact. But my new oncologist, who is associated to Cedars Sinai, ordered myChoice CDx diagnostic test that would determine THE GENOMIC INSTABILITY SCORE (GIS). It is an algorithmic measurement of LOH, TAI and LST for future treatment options as well as maintenance therapy.
In short: doctor hopes that having that Instability score will make her decision for maintenance therapy easier, because of double negative BRCA1/2 and HRD, there is no clear indication that PARP inhibitors are even beneficial.
We would probably have that GIS sometime in May. I hope I will get a break after my 6th Chemo treatment on April 18th!
To be continued! 👋🤞
Hi!
I had that testing done. They use samples from what was removed during your surgery. The test is not automatic; it has to be requested by your onco.
My testing came back "inconclusive," which is frustrating, so they have sent in new slides. I'm waiting for the results.
My onco team wanted this test done because it helps to target post-frontline treatment. But, since we don't know yet whether I'm HRD positive, they decided to put me on a PARP (Zejula) anyway because I'd had a good response to platinum-based chemo and I guess that is a good indication that the PARP would help.
It IS an expensive test, and my insurance did NOT cover it, BUT because they ordered the test before getting pre-approval from the ins. co., by Massachusetts law the company (Myriad) has to eat the cost.
The Zejula, talking about expensive, would cost me $25,000 a MONTH if my insurance company didn't cover it. That is NOT a typo! It's FDA approved, so most insurance companies will cover it. You need pre-approval.
Hope this helps!