Ovarian cancer

[Aliollie]

Hello all, does anybody know if there is anything new coming out for non brca people for ovarian cancer. Niraparib stopped working the carbo has kept the tumors stable but they have not shrunk, the ca125 is coming down though which is good but when the carbo has finished the cancer will probably grow again as niraparib has been tried they won’t give another parb inhibitor really worried 😟 any information would really be appreciated . My mum can only have carbo platin as she has a fast heart beat.

Thank you best wishes Ali xxx

[Lind58]

Hi, don’t know where you are located but at msk they are retesting tumors to see if you have a bcra like gene - not sure exactly what the gene is. But this opens the doors for new treatments, I will see if more information is available

[Aliollie in reply to Lind58]

Hi thanks for your reply mum doesn’t have the bcra gene x

[Lyndy in reply to Aliollie]

The tumour can be BRCA even if you are not xx

[judyneh]

Hi Aliollie,

I am in the USA, and my genetic test in 2017 showed no mutation in either BRCA gene, but there was a mutation in the PALB2 gene. The PALB2 gene was a mystery at the time, and I was told it was a newly "discovered" gene mutation that they had little information about.

What is interesting is that the PALB2 gene is thought to be the trigger to turn on the BRCA2 gene that controls tumor growth. So, if a PALB2 gene (trigger) is defective, but the BRCA2 gene is not, what are they missing? PALB2 gene is directly linked to BRCA2, so why are there no studies to include this genetic defect's response to any drugs?

The medical research seems to be totally focused on the BRCA "sisters", when there is obviously more to ovarian cancer than that. I have gone through all chemo protocols, yet the cancer is growing again, even though I'm not even finished with the avastin/carboplatin/doxorubicin regimen.

My doctor ordered molecular studies on the cancer removed from the latest surgery, and it didn't find any effective treatments. It listed hormone blockers or Keytruda as a last resort, but with limited chance of success. So my options are also very limited, and I'm losing hope.

Your question about treatments for non-BRCA ovarian patients is a great one for clinical trials. I hope they will expand their thinking on this issue. I'm sure there are many others who have perfectly fine BRCA genes, but still have advanced ovarian cancer.

Hugs to you and your Mom, prayers for all!

[Summergold2 in reply to judyneh]

I too am brace negative I am in San Diego and fear the worst as the cancer responded well with Carbo Taxol .....Avastin was added then numbers started to rise 6 months later. instead of Pet Scan they did CT scan showed normal despite my pleas....pet scan last month after a year of Avastin showed active cancer in blood and lymph nodes. After biopsy to see if cancer has mutated put on Doxil and Carbo..........I fear the worst as you are right there doesn't seem to be the excitement to find a parp inhibitor for "our" non braca issues. Any one know of ANY studies/trials being conducted in the United States for us???

[Dmercury in reply to Summergold2]

Lymparzar (so) is being used as a parp in the US for non BRCA ladies. My friend is on it an seems to be keeping her NED. She is HGSC st. 3

[Aliollie in reply to Dmercury]

That’s good news it’s working for your friend but as mum has been on one Parp inhibitor they won’t let her try another one really unfair xx

[Aliollie]

Thanks for your replies really sorry your in the same position I don’t know if this may help you both there is care oncology london and one in America that may be useful. Let’s hope that somebody replies on here with some good news love Ali xx

[SUE7777]

Keytruda works as maintenance for a lot of people although it would be off label I believe, also Clinical Trials. Immunotherapy tends to be a level playing field where you don't need to be BRACA sensitive also your Onc will know about other hormone based drugs. It's a matter of finding the magic bullet. All the very best Sue xx

[Aliollie in reply to SUE7777]

Thank you xx

[Neona]

Please look into clinical trials in case needed in the future.

[Supermary]

I have endometrial cancer stage IVBraca negative

But My tumors are HER2 positive

I’m entering a study for the drug ENHERTU

Also Keytruda might work for you

Make sure you have a full pathology report on all the tumors they have removed from you

So you can explore options

In the USA the clinical trials .gov

Is a great website to research into

Once you have your pathology report

[Gemimablackvelvet in reply to Supermary]

Hi Supermary, I asked my oncologist about a pathology report on my tumours because I was interested in the ENHERTU trial but I didn’t really get a definitive answer.I don’t think he knew if they had or hadn’t got a pathology report. I didn’t delve too deeply as I thought I may have asked the wrong question so I still don’t know

Angela x

[Supermary]

Hi Angela

You didn’t ask the wrong question

I would ask again about the pathology report

I would ask if there ate any clinical trials that you could try

Don’t despair or give up

Margaret