Once again we have had a very sad week, which brings home to all of us the terrible gravity of this awful cancer.
For me, although it is still early days, It appears that my miracle drug, Niraparib, specifically aimed for BRCA1 positive women, of which I am one, is not working that well for me.
It might be slowing down disease progression, but it has not stopped it.
My CA-125 has been steadily rising, although I am still under the limit if 35.
It has gone from 15, to 22 and now 33 for my third month.
When I finished first line, I was NED with a CA-125 of 11. That held firm for 5 months, but at the sixth month it began to double, so six weeks from that point , it was 473 and scan showed return of disease mostly on my Peritoneum.
6 months of Carbo/ Caelyx later, my CA-125 was down to 15, but there were still 2 tiny nodules, less than a centimetre, inside me.
I was disappointed then, but anxious to start Niraparib, which I thought would destroy what tiny disease was left. Now I think I should have asked to remain on Carbo/Caelyx to see if it would do the trick.
I had a scan last week which showed doubling of 3 nodules on my peritoneum. They are still infintisamal. The largest at just 1.4 centimetres, so the Niraparib may be working to slow progression, but is not stopping it.
Still, it is a disappointing result.
My own Oncologist was away, but I spoke at length with the registrar. I tried to get her to simply increase my dosage of Niraparib as I have been tolerating it so well, but after she consulted with the Onc on duty, they said that this is not the answer.
I now have a CT scan set up in 6 weeks, although I will see my oncologist before that and plan to discuss options, including increasing my dosage, but also having another surgery..
I feel fantastic as usual and have no ascites. Except for cancer, I am as healthy as a horse.
If, as it looks, I have to start a different treatment, I need to be away from platinum based chemo for 6 months.
That will be soon enough, as I finished Carbo/Caelyx 18 of March.
So I can start treatment by October, however, after discussion with husband and daughter, I think surgery is the smartest option, as the nodules seem to be only in one spot, and getting them off and blasting the area with the plasma jet would give me a better chance of stopping progression.
So, I are hoping to get me a Second surgery, instead of going straight to chemo. If my Onc does not agree, I will ask to speak to my original surgeon. And if no joy there, it will be a second opinion in London, with Prof F.
So that’s the news and that’s my plan.
Love to all of you.
Keep up the fight,