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
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IrishMollyO
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Welcome back. I think your original 5 years clear was fantastic. I have PPC 3c and have managed 10 months. We always hang on our experts every word and twist them and over analyse them. I know im the worst!!! Hang on to clear scan and nothing unusual. Thats amazing. Enjoy the coffee morning and a big good bye to your rotten year xcc
Sorry I couldn't reply before this as my Cork brother had friend over . Looking forward to tomorrow
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Hi Molly O it was lovely to meet you today. Your story made us all appreciate our own Oncologist. I think you will have to part with Mr obnoxious and return to a pleasant doctor. I wish you well with the next scan. It was amazing the number of ladies who travelled far today including yourself. I enjoyed the meet up and time flew
It was good to meet up for me too. I guess I hadn't meant to go on so much about that experience as I am always concsious of not naming names of hospitals , consultants etc. However you do feel safe in that closed environment like today. I also think it's possibly a clash of personalities and I'm sure lots of people are very happy with their treatment.
I took the two twenty train back to Dublin and with my magic pass I was able to upgrade for 25euro. I was really glad I went and met everyone and heard all those interesting stories . I'm already looking forward to the next one. Take care
Hi Molly, it was great to see you yesterday and see how great you look as for Dr Doolittle that's another story , I also travelled back on the 2.20 train and got of in Portlaoise but I was in the cheap seats . Phil😁😁😁😁😁
I barely made the two twenty to Dublin. I was afraid the train would take off and I would fall down that awful gap between the train and the platform. I'm surprised that somebody hasn't fallen in before now ! You looked great and are a real tonic. I was sorry I went on so much about my personal problem with one expert as looking back it probably wasn't discreet . It is my reality but I must learn to stop being so emotional about it. I did enjoy meeting everyone and it all goes by way too fast. See you at the next one.
Lovely to read your post Molly. I too have been dipping in and out trying to respond when I think I can help.
It is always great to see one of our oldies (not age) posting. I've been threatening to come to Cork or Dublin to meet everyone. I really should just do it ! It's always lovely to have support. I hope joi continue to keep well and as for your Onc don't let the bugger drag you down. Sending love ❤️ xo
I hope you are doing well . You should come to the next one which will probably be Dublin. I guess you could say we are the Ovarian Elders and I don't mean age either ! It is scary to see how many new women have joined the site in the past year. My heart goes out to them when they are starting out and you want to give them all a hug and reassure them. I hope I have helped some of them by telling them I am now in my seventh year since diagnosis and still above ground ! Take care
It was great to meet up with you too. Everyone's stories differ so much and there are good and bad experiences . Sometimes I think I expect too much or maybe I'm too over sensitive . I do think however that everyone should be treated equally and get the same compassionate care. Maybe that is unrealistic in a world where this disease is getting more and more common.. I was happy to hear that not everyone had bad experiences.
I hope you weren't too exhausted after the day . Your story began so long ago and yet you appear so calm through it all. I wish you all the best Juliet and I will keep you in my prayers. See you at the next one !
I've only just seen you're post. I have been dipping in and out but don't come on every day. Nice to hear from you.
I can't have the contrast dye because of an allergic reaction to it. I've had good and bad CT results with it which appear to be accurate and correlate with symptoms. One radiographer said not to worry about it because it only reduces their ability to assess things slightly. She said it's like watching a snooker match in black and white rather than colour - if you know where the balls are supposed to be in the first place then you just have to concentrate more to keep an eye on where they go!
Thanks for getting back to me Sandra . It must be quite rare as you were the only one to reply to that question. Anyway you have reassured me and I'm in the process of parking my PPC as far away as possible so I don't have to confront it until my next appt in Oct. I have lots of visitors coming and going who manage to distract me for large periods of time . I want Summer to last forever. To be continued ! I hope you are in a good place right now . Take care.
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