I have not posted before but have read posts and occasionally replied. Originally I was diagnosed with Grade 4 PPC in February 2015. I had a large tumour, ascites, a pleural effusion and some activity in the lymph nodes in my chest. Initially I had 11.5 litres of ascites drained off, then 8 litres followed by a further 4litres. I was huge round my middle! I underwent the usual chemo but carboplatin only, I couldn't have paclitaxol with it due to a congenital heart defect. I had debunking surgery after the third chemo.
I was given 2 to 2.5 years to live when diagnosed. In July 2015 I was NED and have had blood tests every three months since. I am still NED. My Ca125 was 8 this week.
I am posting this to give hope to those of you who are newly diagnosed with OC, particularly if it is advanced. The prognosis can be shocking but it is only a number based on the average survival rates. That doesn't have to be you! My oncologist said to me on Tuesday that she normally talks about when it recurs but in my case it's now if it returns.
Based on my prognosis I shouldn't be here by now but I am enjoying life. Since my chemo ended I have been on holiday to France, Kerala, Vietnam and Cambodia, Dubrovnik and Montenegro, Italy and Brazil. I wasn't going to depart this world with regrets! I have more holidays planned and will continue to travel and enjoy life.
Good luck to all of you. Try to stay positive, even if it's a bad day it will pass.
Anne xx
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AnneSB
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Wow! 11.5 litres....! Given that a pint of water weighs 1lb-and-a-quarter (you can tell I predate metrification) you must have been exhausted carrying all that weight around with you.
Thanks for a posting such an uplifting post. Your choice of holiday destinations sounds fascinating.
Thank you so much for your post it is great to hear such a positive story and you have certainly travelled to some amazing places . I was diagnosed stage 4 in June 2016 and initially inoperable had chemo and radicle debulking and am now on maintance Avastin . NED with CA125 of 9 . Was 3880 when diagnosed!
Trying to make the most of everyday and thankful that I am still here and relatively healthy .
Am nervous to travel as was diagnosed out of the blue when taken ill with ascities on holiday in Mauritius but hoping will be able to overcome this with time as get more confident .
Keep travelling girl and enjoy seeing the world , stay well and strong . Love and best wishes Kim X
Just try a short trip in this country first to see how you get on. I usually try to have my check up near to when I go away. I know a recurrence will start slowly and I would be on watch and wait so if that does happen I will be alright for a 2 week holiday. Anne x
Great post Anne! I was given 2 years following diagnosis is 2007 and despite two recurrences I am still here, NED with a CA125 of below 3. There's always hope, while we breath we fight! So Glad you are doing so well and LIVING! Kathy xxx
Your posts over the last 2 plus years have always given me hope. It was so important for me to be aware that you can live for a long time with this disease. Long may you remain NED. Thank you so much, Anne xxx
Anne-Thank you so much for posting. We all collectively love posts like yours. It gives us hope for a full future. You went through so much at the beginning of your cancer treatment! Please keep us posted on your journey. Enjoy your travels!
Thanks for your wonderful uplifting story of hope. Today it spurred me on . I loved your whirlwind holidays ! So tomorrow I am going to put my Jun scan to the back of my mind and plan a May holiday in the sun. Take care
Thank you all so much for all your replies. As always you are a wonderful group of ladies who are very supportive. It is great that so many of you found the time to read and reply to my post with encouraging comments. Good luck to all of you. Very warm wishes Anne Xx
Anne....thank you, thank you for this. I have been feeling increasingly upset about the Drs saying things to me that do not give me hope. Today..you have offered me a slimmer of hope...thank you.
Out of interest, do you take any supplements or other maintainence drugs at all?
Hi Nicky, I have not had any maintenance drugs but I do take a 75mg aspirin each day. My oncologist said it wouldn't do any harm and would help me protect myself against coronary heart disease. I had read it was associated with helping prevent cancer due to its anti inflammatory properties so I take it on that basis! Does it do any good? I have absolutely no idea but I thought it was worth a try!
Good luck with any future treatments you have. Try to keep positive, if for nothing else other than to help you feel better.
Thank you Anne! You are a marvel to us all! That is really an amazing post and your news will give so many hope. Thank you so much for sharing. I have just started on the aspirin thank you. So much love to you and continued health xxx
Love this Anne and I will give you even more hope. I was grade 4 PPC in March 2014 with only weeks to live BUt here o am and I'm living my life to the full exactly like you. Im spending time with my family and travelling to as many places as I can afford to get to. We are and enjoying every precious day. We all need these real stories to inspire us.
I'm off to Cambodia in November on a mission with a group from church.
That's fantastic Julie. When you've had a diagnosis like we have it does make you really rethink the whole of your life and where your priorities lie.
There seems to be no rhyme nor reason why some of us seemingly keep going despite a poor prognosis but others don't. A major area for research perhaps.
Have a brilliant time in Cambodia in November. I am going to South Africa in November but just for an adventure not a mission. Love Anne xxxx
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