This is the first time I'm posting, though I have replied to posts in the past. I have stage 1c3 ovarian cancer clear cell and am currently on chemo - 4 out of 6 cycles so far. The lead doctor at the Penny Brohn Centre told me about this book called "Radical Remission" by Kelly Turner. It's based on researching people with cancer who lived significantly longer than their doctors expected. From the research it comes up with 9 key things that many of the people did. I've just ordered a copy of the book and have learned that there's an online course starting in a week's time based on the key findings of the book. Here's the web page: radicalremissioncourse.com There's an audio of a Q&A session that the author did recently too - you need to go on their email list to get it - but the audio's free -you have to pay for the online course if you want to do that - or just work through the book on your own. I'm really keen to do anything to increase my chances of not having a recurrence - as I'm sure you are too. Would love to hear from anyone who's looked at this book and tried to implement its findings. If anyone else is interested in trying to put these 9 things into practice in your own life - maybe we could support each other through this online community - I'd love to hear your thoughts.
xxx Sundra
PS Penny Brohn Centre - pennybrohn.org.uk - is worth checking out - courses and appointments are by donation, only what you can afford
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Grace123
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Interesting post, Grace123 - I am interested in any way of maximising my chances, so I am going to download the book onto my Kindle and have a look! I am OC Stage 3c, diagnosed last October, just completed 6 rounds of carboplatin/taxol with added Avastin for the last 3. Will continue on Avastin. I was considered for surgery after 3 cycles but they said that although the tumours had shrunk the cancer (which is also in the peritoneum) was too diffuse for surgery. They reckon I will have better quality of life on chemo. Being scanned again next week, so let's see what happens. The chemo has made me feel a lot better CA125 down from 10,500 to 105 after 5 cycles, but like many I fear recurrence. I live as normal a life as possible, do lots of walking and socialising and try to keep happy! I reckon this book/course could be useful.
Thanks, Grace. It's been my night when steroids have disturbed my sleep so I have already read a lot of it and it's very helpful and empowering - you don't need to buy in to everything it says, but the survivors' stories are remarkable and show what can happen if you take acive steps yourself. My oncologist is great and easy to talk to, but it does tend to be about the symptoms and the treatment rather than me as a person. There are other angles to go at this disease - on with the reading!
Thanks so much for sharing. It seems an interesting course and worth looking into complimentary techniques based on scientific evidence and research. I hope you find it helpful. Do please let us know how you get on. xxx Annie
Yes I read the book and found it great. My thoughts are the doctors job is to the medical side and my job is to get my body in the best condition that I can. I became vegan while I was in hospital. I did this after reading the book 'your life in your hands' while I was awaiting my diagnosis. I really believe the change in diet has helped me so far. I recovered very quickly from my radical hysterectomy and so far my chemos have not been too bad. It sounds crazy but I'm 2 chemos in and I feel and look better than I have done in months, if not longer. I have a chum that's a reiki master and yoga teacher and she gives me weekly reiki and we're working on yoga techniques especially breathing. It's great I feel better for it after, really relaxed. I've always liked a bit of complimentary medicine.
Just now I'm reading 'beating cancer with nutrition' and I've increased my supplements.
There is also a private cancer centre in London that I'm hoping to attend. I'm in Norway and they collapsed a little bit of my lung during a procedure so I'm waiting for the green light to fly.
I see this as the biggest battle of my life and I want to attack it on as many fronts as possible.
Hi Michelle Useful to hear from someone who's already read the book & found it great. You've made loads of changes already and are clearly benefitting a lot from them - so that's inspiring. I haven't heard of the other books you've mentioned - so I'm going to look at those too. I have made some dietary changes, but was advised not to take nutritional supplements until completion of chemo, though I know people who do and seem to be benefiting - I'm just a bit cautious. I'm interested in this private cancer centre in London that you're hoping to attend - is that for a holistic approach or purely medical?
Your life in your hands is about breast cancer and how the author cured her stage 4 cancer by diet changes. It also talks about ovarian as they are both hormonal cancers. I have low grade serous which like clear cell is also rare but they think the low grades are hormonal driven that's when I gave up dairy and meat. She also has a cook book that I use a lot.
The place in London is where Leeds 2015 talks about in her post. They prescribe drugs that are currently being used for something else, like metformin. There's currently lots of trials going on as diabetics on metformin have much lower cancer recurrence rates then the general population but it kinda also works with the theory that cancer is a metabolic disease and sugar feeds it and by taking metformin you're interfering with the feeding of the tumour. I would have already gone if I'd been able to fly as the protocol also makes the chemo more effective.
The supplements that I'm taking I've researched beforehand to make sure they don't interfere with the chemo, in fact I've found studies that shows they often help. I haven't discussed it with the doctor as I'm going to do it anyway but that's more to do with me not willing to follow the rules I would rather find my own path.
I love to reaseach for me knowledge is power and it kinda gives me some ownership of the chaos that's surrounding me.
Thanks for this - very interesting - I've checked out Leeds 2015's post too. Your life in your hands sounds like a good book to buy too. I'd be really interested in hearing about your experience at the cancer place in London.
I have not heard of this book and will look into it, need some inspiration! Also wanted to pass along that I too was diagnosed (at age 51) with stage 1c (3 doctors thought that, 1 thought 2c) clear cell OC, also grade 3, aggressive, and tumor ruptured in surgery. My diagnosis and surgery, everything out, including 34 lymph nodes, was in June 2013 and I finished chemo 6 cycles carbo/taxol end of 2013. I have been NED so far. They consider my start date of survival at end of chemo so I'm now 2 years out, will have next check in May. One doctor told me that clear cell is aggressive and can be resistant to chemo but if you can make it 3 years without a recurrence, and better off 5 years, without one, the chances it would come back after that are low, as opposed, he said, to some other types which can recur whenever. There is a constant shadow over me but I am super busy, am starting a new career as lost my job after being out so long when I was sick, and bless each day. If I can make it to the 5 year mark, which will coincide with my 25th wedding anniversary I intend to have a big party!!! I am curious if you have been told anything else about the specifics of clear cell - it is relatively rarer than other types and I don't often meet anyone with it. Good luck with the rest of your treatment - I remember hitting a bit of a wall after chemo 4 but 2/3 done is great!!!
Great to hear from someone else with the same diagnosis as me - but further along - 2 years in remission is great - congrats!!!! - & inspiring for me too. I hope you're celebrating this achievement too! Sounds like you're doing really well with being busy and starting a new career - not easy after your diagnosis - I'm being made redundant at the moment - though not because of my illness - so I'm trying to make what plans I can to start a new related career too. I don't know any more than you've said about clear cell - but I'll let you know if I do. I'm definitely hitting a bit of a wall after chemo 4 too - honestly wondering if it's worth pushing through to the 6th cycle given how little potential benefit our diagnosis gets from chemo - 8% of women with our diagnosis benefit from chemo, and chemo's less effective with each cycle, but being cautious I'll probably go on to the bitter end!!!
I too was 1c back in August 2014, had the op and 6 months of Carbo/taxol and am in remission.
I have read this book and found it inspiring, so much so that I have been on a nutrition and fitness course and next week a coping skills to give me the ammunition to deal with what may be or maybe not thrown at me.
I believe it's not just the medical professionals to make us better,but that we have to help ourselves too.
I've learnt it's not down to complete abstinence,but everything in healthy moderation and enjoy life, because none of us know what is around the corner.
I am looking at going to a mindfulness course too as a lot to do with coping is to have general well being.
Hi Carole Great to hear from you & congrats on being in remission. Good to hear that this book's been inspiring for you and that you've made changes in your life because of it. I also like your reminder about everything in moderation as I changed my diet a couple of months ago & have at times got a bit uptight about it - which is silly - we need to relax and enjoy too! I did a Mindfulness-based Stress Reduction (MBSR) course about 6 years ago, and am now 4 years into a 5 year mindfulness masters at Bangor University (am taking a year off before my thesis) & I have to say that my daily mindfulness practice has really helped me deal with my diagnosis and chemo - as well as life in general - so I'd really recommend it. Let's keep in touch - I'd love to hear how your coping skills course goes and what you learn.
I was diagnosed 1C 3 too in 2012. Three years almost to the day in 2015 diagnosed with recurrent disease and marching quickly. Now have colostomy after radical surgery and halfway into chemo. I don't trust time frames any more doc said if it's coming backbits usually within two years. Wrong. Scan on Wednesday. I'm going to be watching my food which is hard on a low fibre diet and upping the exercise. My biggest plan is to avoid stress. I had a really upsetting time in 2015 and do think it's related. My high grade has been analysed as hormone driven just waiting on genetic testing. My youngest is in her teens so hope it's negative
I agree about the stress LA, I think that was my problem, my daughter is having genetic testing too, not from me but from my husbands side of the family, both his mother and Grandmother died of Ovarian Cancer.
HI Lily-Anne It's so good to be in touch with women with the same initial diagnosis as me. I've never heard of the cancer being analysed to find out if it's hormone driven - sounds like this is useful to know - I'm going to ask my oncologist about it. Wishing you & your family all the best xx Sundra
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