This is my update from my disappointing realisation that even though I am BRCA 1 positive, Niraparib was not the saviour I had hoped it would be.
Yesterday, I met with my Oncologist, bringing along my daughter and husband for back up.
As expected, my CA-125 continued to rise, from 33 to 59. That is a slow trend compared to my first recurrence, when it doubled every week.
I therefore presumed that the Niraparib was slowing progression and asked to have the Niraparib dosage increased, as I have few side effects and am on 200 mgs.
My Oncologist poopooed this idea.
She also told me that I could not switch to Olaparib, another option I was entertaining. That I could not qualify and if Niraparib didn’t work Olaparib would not either.
I am having another CT scan next Thursday, and a follow up appointment with my Oncologist two weeks later.
Yesterday’s appointment was for me to be prepared for the likely outcome and to discuss my options for treatment.
My main interest is having a second surgery and then chemo for clean up. Again, my Oncologist said that this was not an option. However, I kept pushing, as I am strong and healthy, had no problems from my debulking surgery, no adhesions, no hernia, and my scar has all but disappeared - alnd the cancer is concentrated around one spot in my peritoneum.
So, finally, she promised to advocate for this at the next MDT meeting, but had little faith in my surgeon agreeing.
However, she had some hopeful Options: She said that she could organise the following, if I so chose:
1. Refer me to Prof F, who might agree to operate.
2. Refer me to the Royal Marsden, where they are trialing Olaparib combined with weekly Taxol.
So, crushed, but hopeful, I went on an eating binge all afternoon.
But today is a new day and I am ready and willing to fight on.
In other news, I talked to Penny in the waiting room, whom I met on this forum. It was heartening to see how cheerful she was on weekly taxol and that she is doing well on that regimen, which will be my fallback option. I am grateful to this forum for introducing me to a fellow battler living in my town.
Keep up the fight!