Hi everyone. It has been quite a while since I have written a post. Like the Queen I had my annus horribilis last year and I didn't want to inflict my negativity on anyone ! I skated around the edge of the website occasionally replying to someone when I felt I could help in some way .
I have never been able to insert my profile so for anyone new this is what I hope is a brief summary. Diagnosed in 2011 with stage 3c high grade serous PPC. Considered inoperable so after draining 8litres of ascites I was treated with Carboplatin and Taxol every three weeks for 6 sessions. I reacted very well to chemo and my CA 125 went from 8000 to normal . I remained NED until last year when it as detected in my peri aortic lymph nodes..
I went for a second opinion and was advised to watch and wait until July last year which I agreed to and a scan in July showed the swelling had increased so I was scheduled for chemo in Aug. I'm sure you all know that if you have a long disease free period the standard treatment is carboplatin and Taxol again . This was recommended by my second opinion oncologist but my oncologist insisted on Carboplatin only. He said Taxol was too toxic for me despite my good reaction to it first time . I reluctantly agreed as I didnt want to delay any longer..
In fact the Carboplatin only which was meant to be increased each time had to stay at the same dosage as my creatinine levels were climbing. I never had that problem with the combination. Does anyone know if Carboplatin on its own causes this ? Do you get a much higher dose of it when they are not including Taxol ? I couldn't get my final dose in Dec as my levels were still high . They kept me for two nights to hydrate me and then did a CT scan. That was clear and my Ca125 was 25 .
Three weeks ago I had another scan but just before I went in they called me to say that I would not be getting the dye contrast due to my previous creatinine levels . I was disappointed and failed to see the point of doing it . At my appointment last week with my gynaecologist he said my scan was clear and the examination showed nothing unusual. I questioned him about the lack of dye contrast and he said that was only used for the bowel area and that set more doubts in train ! Of course it's one of the areas this disease affects. I suspect it's an age discrimination thing but I can't prove it. Anyway I am trying my best to get positive again !
Right now I am on my way to Cork for tomorrow's coffee morning . I'm looking forward to seeing everyone I met before and some new faces. I hope I don't have my usual dramatic entrance ! This has included going to the wrong hotel or tripping over steps ! I hope that despite all my dramas that my long NED gives others hope . Take care