I'm dancing with NED
I had to share some good news with you all. Yesterday I had a meeting with my onc. and got the results of my post surgery/chemo CT Scan. The result - NED - is the best we could have hoped for.
Who knows how long this will last - onc. says chances of tumour returning are "moderate" but hard to give stats as my case is so unusual (2001 hysterectomy for hyperplasia but no cancer found, 2007 radiotherapy for adenocarcinoma at vaginal vault, 2010 second recurrence requiring major debulking surgery followed by 6 rounds of carbo/taxol). But I am encouraged that there are still some options in the "armoury" which we can use in the future, such as Caelyx (liposomal doxorubicin), hormone therapies (tumour is being tested for receptors) and even a re-challenge with carbo/taxol if I get a long remission.
But for now, I am basking in the light of NED, planning a holiday, trying to eat well and take my supplements, thinking positively that I have beaten this and generally get on with my life.
This site is a source of great inspiration for me. So many ladies have had multiple rounds of remission/treatment and you have all given me the strength to keep going. I have my fingers crossed that everyone currently in treatment (Linda, Ro et al) gets to hear the magic words very soon.
With warmest wishes to everyone
Helen
Comments
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Basking in the light of NED
Helen,
I am thrilled for you that your CT scan showed such wonderful results. My hope is that you can continue to think positively that you have beaten this beast. Enjoy your holiday; and when you get back, you can get all of the inspiration and advice you might need from the women on this board regarding how diet, exercise, and vitamins can help you stay NED. We're here for you.
All my best wishes,
Jill0 -
Great news, HelenRewriter said:Basking in the light of NED
Helen,
I am thrilled for you that your CT scan showed such wonderful results. My hope is that you can continue to think positively that you have beaten this beast. Enjoy your holiday; and when you get back, you can get all of the inspiration and advice you might need from the women on this board regarding how diet, exercise, and vitamins can help you stay NED. We're here for you.
All my best wishes,
Jill
Keep on dancin' with NED! I love good news.
Suzanne0 -
HelenDouble Whammy said:Great news, Helen
Keep on dancin' with NED! I love good news.
Suzanne
Congrat's on the wonderful NED news!
One more person to add to our NED Dancin' Group! Keep up the good ways of eating, exercise, and reducing stress...so much research showing this to help keep our immune systems extra strong to fight off the cancer~
Jan0 -
Well done Helen!
I saw your earlier message as well - and it has really made my day to hear your news!
Very interesting that they are profiling your tumour - my consultant said something in passing about the molecular biology of mine and I caught a glimpse of my path report which mentioned various things (I know I could request a copy of the report but so far I am 'happy' with my carbo/taxol adjuvant treatment - if things don't work out, then we'll see....). Profiling is hardly mainstream yet - at least, not in the UK - and carbo/taxol seems a powerful treatment - but tailoring the treatment makes a lot of sense to me.
Good luck with the healthy eating/supplements - as you know, I am very interested in this so do continue to keep us posted! I've just discovered a new green vegetable at Marks & Spencer - it's Flower Sprout - a cross between brussels sprouts and kale. Have you seen it? It looks super healthy and I am really trying to get into the greens. Getting a juicer soon as well.
One more question, if you don't mind. What's the plan for monitoring going forward? Are you to have scans, smears, and at what frequency?
Take care and have a wonderful holiday
Thanks again for sharing your great news!!!
Susan xxx0 -
CONGRATS HELLEN
That is great news Hellen. Just take it and run... go on holiday, eat, drink and be merry....0 -
Let the JOY wash over you!! Believe in the sweetness of NED!!Cindy Bear said:CONGRATS HELLEN
That is great news Hellen. Just take it and run... go on holiday, eat, drink and be merry....
Though I long to take a spin in ol' NED's arms, I can bask in the refected happy glow of ANY of my sisters here who capture that boy's heart. I'm SOOO happy for you!!
Please let yourself TOTALLY believe that this is the start of a FOREVER of vibrant health, for there is every reason to believe that it is!! BE HAPPY! There's absolutely NO advantage in preparing yourself for the other shoe to drop. If that happens (and it WON'T!) you already know you're strong enough to survive the heartbreak. So never give recurrence a thought! LIVE with unrestrained and confident JOY! Congratulations, dear girl!0 -
The sweetness of NEDlindaprocopio said:Let the JOY wash over you!! Believe in the sweetness of NED!!
Though I long to take a spin in ol' NED's arms, I can bask in the refected happy glow of ANY of my sisters here who capture that boy's heart. I'm SOOO happy for you!!
Please let yourself TOTALLY believe that this is the start of a FOREVER of vibrant health, for there is every reason to believe that it is!! BE HAPPY! There's absolutely NO advantage in preparing yourself for the other shoe to drop. If that happens (and it WON'T!) you already know you're strong enough to survive the heartbreak. So never give recurrence a thought! LIVE with unrestrained and confident JOY! Congratulations, dear girl!
Linda,
We have not communicated directly on this site, but I have read all of your posts. You are so full of good advice, compassion, and optimism; and I love you for it. Many of the women here have let you know how much you are appreciated. This time, after reading the above email, I had to let you know that it's true for me, too.
Jill0 -
Congrats
Great toh ear.
Sara0 -
Amazing!Sara Zipora said:Congrats
Great toh ear.
Sara
Helen, I'm so happy to hear this news! Thank you for sharing. It gives such hope to everyone. Enjoy your holiday! xx0 -
Thank you to everyonelkchapman said:Live it up!
Happiness is dancing with NED! Enjoy!
Laura
I am amazed that so many of you have taken the trouble to post. Thank you all for your good wishes. We are all on such a rollercoaster ride that I think we need to post our "good bits" to keep our spirits up!
Every good wish to you all
Love
Helen xx0 -
Susan - re follow up planSusanna23 said:Well done Helen!
I saw your earlier message as well - and it has really made my day to hear your news!
Very interesting that they are profiling your tumour - my consultant said something in passing about the molecular biology of mine and I caught a glimpse of my path report which mentioned various things (I know I could request a copy of the report but so far I am 'happy' with my carbo/taxol adjuvant treatment - if things don't work out, then we'll see....). Profiling is hardly mainstream yet - at least, not in the UK - and carbo/taxol seems a powerful treatment - but tailoring the treatment makes a lot of sense to me.
Good luck with the healthy eating/supplements - as you know, I am very interested in this so do continue to keep us posted! I've just discovered a new green vegetable at Marks & Spencer - it's Flower Sprout - a cross between brussels sprouts and kale. Have you seen it? It looks super healthy and I am really trying to get into the greens. Getting a juicer soon as well.
One more question, if you don't mind. What's the plan for monitoring going forward? Are you to have scans, smears, and at what frequency?
Take care and have a wonderful holiday
Thanks again for sharing your great news!!!
Susan xxx
Hi Susan
The plan is to follow me up every 3 months. Just physical exams - the oncologist doesn't think the CA 125 is a good marker for me. But if there is any sign of anything, or I am concerned, then we will get a CT scan. I am happy with that, as I know from past experience that anytime I expressed concern about a pain or symptom, she ordered a scan without hesitation. There is some hesitation to order routine 3 monthly CT scans because of the level of radiation (I have already been exposed to a high level through pelvic radiotherapy - 60 GY in previous treatment). I know that some people only feel "safe" when they get regular scans, but knowing my history, I will get some sort of symptom at an early stage to announce a recurrence!
The tumour profiling will just be to look at hormone receptors (not chemo options) but at least we will know from this if hormone therapy is a future option.
The new veggie sounds interesting - I love most green veggies so I must look out for it. I keep meaning to look into getting a juicer - perhaps I will get someone to buy it for me for a birthday present. I have also been told that asparagus is a good anti cancer food so I must look into that as well as I haven't read much about it.
There's still so much to learn about how to help our bodies fight this darned disease!
Love
Helen x0 -
Dancing witb NED
SO VERY HAPPY FOR YOU!!! Enjoy your health and holiday! We know how wonderful the news is....0 -
So happy for you, Helen.Northwoodsgirl said:Dancing witb NED
SO VERY HAPPY FOR YOU!!! Enjoy your health and holiday! We know how wonderful the news is....
So happy for you, Helen. Keep dancing. Mary Ann0 -
Congratulations HelenSunny777 said:Keep dancing
I'm so very happy for you. Have a great time.
Keep dancing with NED Helen. Congratulations ! you Earned it! What an accomplishment. I wish you many years of dancing as I hope the same for all of us. Treat yourself to something special!
SUE0
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