Hi I’m smiling and feeling good after my wedding. Thank you all for taking time to wish us well. I love it when you post about holidays, making special days or enjoying the world for one reason - and I go the chance to say I was balancing the great with the crap with my wedding.
Today Tom went to work and I went to hospital (with my sis) and started the Rotterdam regimen to see if I can stabalise.
I’m borderline platinum sensitive but as s low grader I don’t get a good chemo response.
I choose between 3 chemo regimens and didn’t Chose the easiest. As a low grader I spoke to the profs g in Houston or Scotland to help me .
The choice was:
Caelyx/cisiplatin
Cisplatin weekly
Cisplatin weekly and ectoposide - Rotterdam.
All good. no data to say which is best. It’s all whether I’m really platinum insensitive reducing chance to respond. So I’m doing Rotterdam with ectoposide just in case.
This time unlike primary chemo. I supporting with complementary lifestyle, immunity support, hyperthermia to try & improve increase response. Any ideas to add especially for low graders or low responders are most welcome
Will keep you posted! Must try and sleep now jane x
Written by
Agility
To view profiles and participate in discussions please or .
Yes. I have everything crossed! You have to go for it, don’t you. The surprise was that I got in the dress. The ascites put paid to my hourglass figure and flat tummy. Strange how I just wanted to get to the day and now vanity kicks in ! Ha ha. Women! Rarely satisfied with our looks. X
You look lovely. Good luck! I know exactly what you mean about balancing the great with the crap. There is something about the word 'Rotterdam' that makes this regime sound scary - how much better it would be if it was called the Amsterdam regime, even. Or Florence, or Paris... Any other suggestions?
You are correct! Now Amsterdam would make it sound as if drugs were fun ! Which they can be. Tom isn’t looking forward to my steroid days..... he says I’m not manic but do talk a lot at speed! X
Lovely to see a pic of your dress , really beautiful . Good luck with your treatment and hope the side effects are minimal and it stabilises your disease well and truly .
All the money in the world couldn’t improve the choice of dress. It’s absolutely perfect on you. How beautiful you look and how joyous.
I hope things go well with the new regime. I was wondering if you’d still be having treatment if the dreaded ascites hadn’t turned up? That’s the case with me. Xx
I would have needed something. I was being enrolled for LOGS MEK inhibitor trial. That’s not option now. But it doesn’t matter as its no longer enough. We need the kitchen sink to stabilise me. Maybe I will have it later if this chemo works. And thanks for dress. I had totally changed size and shape so it looked very different but this older bride was still in it! Take care x
I have widespread low grade with high grade features. They’ve told me that even though it’s advanced progressive, I won’t have any chemo until I have symptoms, which basically means ascites. I was diagnosed after an A and E admission in 2011 and given chemo. Then I had a necrotic tumour removed in 2013. I was then told that they were sorry and that I’d not be offered treatment. I was offered pain relief by the hospice.
Since then, the pain has reduced and, although I’m not myself as I was, I’m still here. I’m amazed and so is my GP.
I no longer have scans as even if it’s everywhere (which it is and calcifying as it goes) I won’t be having treatment according to my consultant.
Odd but you are here with your life and are enjoying a longer life than they expected. For me selfishly. I delight in the fact you alive and your body is outliving their expectations. Hope it’s not so debilitating. And it helps my motivation to know none of us including medics know really how we will do. That’s great when you know the odds. Take care x
I know and thank you. My Aunt’s friend had treatment for Stage 4 high grade in the 80s. She’s still here. Nobody can tell.
Everyone is an individual. It breaks my heart that so many of my friends here have gone, some of whom I became very close to. There are others who have had it but are leading normal or normalish lives.
I was told at the beginning that I had between several months and two years. I was very distressed at the beginning with major issues coming to terms with the disease and with body image issues. Worrying about body shape seems trivial compared to my prognosis but I was well aware of how I looked (to myself, that is).
I’m still here and on 1st March, it will be seven years since I was first taken into hospital. What an horrendous 16 days that was, not knowing if I’d get out.
I take each day as it comes which is the only way I can deal with it. I can hardly believe how long it is now and I have a strong sense of disbelief. Sometimes I feel like I’m not really here, something like how Bruce Willis’ character feels in The Sixth Sense, but, anyway I am still here and thankful. Xx
What a beautiful dress. You look stunning. Hope the treatment goes well
A beautiful, stunning pic. Good luck with your treatment. I'm on caelyx for first recurrence. Just lately I've found it hard emotionally but I know I'll pick up. We always do and feel so much better when in that positive place. X
My head feel off with my recurrence. I think that it knocks our hope. I finished first line in jan 17 and it was back jun 17. After my head fell off, I tried unsuccessfully oral letrozole. It gave me a wonderful summer away from the hospital and I visited family in the states including my little nephew and took a few holidays. 2nd line failed but I got to live. So this chemo is 3rd line. I feel calm but I remember very clearly the recurrence and how hard it is emotionally. I’m glad like me you picked up. I choose to live each day instead of dying a little more. It’s more positive, fun and we know scientifically is better for us. Take care x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
to the Amsterdam regime!
Rotterdam Regimen- any information please
My regime for post bowel blockage and beyond.
Another failed chemo regime!
starting chemo tomorrow 
