I haven't posted much recently as I had horrid week of radiotherapy then a wonderful week in Amsterdam. Neither did any good to my tumours which have continued their march through my pelvic region and into the pubic area, which no woman wants.
I saw my trial oncologist yesterday and there's nothing left in her box of tricks that could help to she's referred me back to Addenbrooke's with the recommendation I have Cisplatin/Etoposide, the Rotterdam Regime. Needless to say, I'm very fed up that my cancer has progressed this far and denial is no longer an option so I just have to get on with it. Other brave ladies have written about their experience with this combo and it's evidently not an easy pathway. Whilst I'm willing to give it a go, I'd like to hear from anyone who's been on it or is on it. If it's too much of a challenge to share your story, don't worry, I don't mind if you don't, but I would like to wish you every strength at this difficult stage Gina xx
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Ge0rg1na
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Thanks for your response. I'm sorry to be leaving CRF as it's a friendly environment and Addenbrooke's Hospital in Cambridge isn't quite as warm and intimate.
Good luck with your journey. It must be tough for you living so far away but you seem to cope. I suppose we all do in our own way. All the best Gina x
Yes and what's so upsetting is that it's the last chemo I can have. The curtains are that much nearer but that was always going to be, I guess. I'll miss my chemo mates at CRF xx
We’ll have to arrange a reunion later in the year. I think you can have taxol again if sufficient time passes from the previous one and also Caelyx if the Rotterdam doesn’t work.
Thanks for your supportive reply. I'm waiting for an appointment - it seems things move slower out of London! Hope you're getting sorted too. We'll send private messages down the line if we're to arrange a reunion. Love Gina xx
Sorry I haven’t had this combo, but just wanted to say you are real trooper and you are doing fantastically well. Don’t let this bloody cancer take over everything it has a damn cheek. Keep fighting it my lovely, you can do it. Sending lots of love 💕 hugs 🤗 and positive thoughts your way
Hi Georgina I was offered either the Rotterdam or cistplatin and gemcitabine and I opted to go for the cistplatin Gem route as less chance of losing my hair which I suffered 18 cold caps for on the CEBOC trial during taxol and it worked! I did check with Prof Jayson if the Rotterdam had better results etc as I wasn’t going to risk my life for vanity but he said they are very much of a muchness and up to me to choose!
I completed cycle 1 (day 1 and 8 chemo, day 15 week off) with very few side effects (1 mouth ulcer) and felt great however when I had bloods done before the start of cycle 2 my neutrophils were too low so cycle 2 was delayed a week until yesterday my neutrophils were back to normal. I was gutted and worried as my Ca125 was starting at 4562 (I always get high numbers when the beast stirs)but prof Jaysons sec rang me the day of my missed chemo to tell me after 1 cycle it has dropped over 75% to 1142 so I am more than happy with that!!
I will now have to have filgrastim injections for a few days after each chemo to boost my WCC and take my first dose tonight, I’m hoping side effects are manageable!
I truly hope the Rotterdam is kind to you and all I can recommend is that you drink until you feel you’re swimming on chemo day and a couple of days after as cistplatin can be harsh on your kidneys.
Here’s hoping we both get a long remission following this 💕
Thanks, Bev, for your warm reply. Thanks to this site we are getting cyber support and I for one don't feel so alone so I'm grateful I'm on it. I will certainly drink a lot before, during and after treatment, good advice as, like yours, it's going to be a challenging one. We can do it!! Gx
JUST READ YOUR REPLY (NINE MONTHS AGO) AND ALTHOUGH IT IS OLD, I WANTED TO TELL YOU THAT I TAKE AN ALLERGY PILL ( I USE ALLEGRA) WHEN I NEED FILGRASTIM. IT REALLY HELPS DIMINISH ANY SIDE EFFECTS. AN ONCOLOGY NURSE TOLD ME TO DO THIS. TOO BAD THE DOCTOR DIDN'T BOTHER TO MENTION IT.
IT MADE A WORLD OF DIFFERENCE. JUST WANTED TO PASS IT ON.
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cruise here I come
Next Op to remove tumour - colostomy here I come!
Help with the Rotterdam Regimen
