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New Story -Thank You Forum Users and Support Nurses


Ant11
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Having lurked on the site for coming up to a year, I want to say a huge thank you to both patients and family users of this website. My lovely Sister In Law Tracy was diagnosed in November 2013. I don't need to go into how as a family we felt, that is something you all understand. The journey so far has been helped by the wonderful support of both Jeni and Dianne, who do a tremendous job, and to you all too as I have learnt things by reading blogs etc, sending emails and making numerous phone calls. Today is a proud day for us as Tracy's story has been published on the site. Writing this story wasn't easy but a way that she could repay so many of you for the help we have obtained from this site, and share some of her experiences. Tracy is so inspirational and like other sufferers never moans but takes everything in her stride and keeps pushing the limits. I would also like to thank Carl, Rob and Cathy who use this site and who we have kept in touch on the "outside", your support and encouragement has been so valuable.


Please can I ask you take time to visit the real life stories and read Tracy's, you will see just how amazing she is. With 21 sessions of "Furry Fox" (as we call it) under her belt without a break shows just how strong and determined she is........ xx

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Thanks Ant for that, I have just read it to my husband, he too had a tumour on the tail of his pancreas, but was lucky enough to have surgery in September 2013, but after 6 sessions of 5 fu he was found to have 2 tumours in his liver. The chemo was swapped to Folfirinox, and after 6 sessions the tumours had shrunk, so he had a 3 month break that stretched to 4 due to delays with the holiday period, but, the tumours had grown again so he is back on Folfirinox. So far he has had another 4 and he is having a scan today, to see wether he can continue with the treatment. Tracy's story has helped a great deal, just to know there is someone in a similar position doing so well, is a great boost, so thanks again for posting and please send our love to Tracy, take care sandrax

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Hi Sandra, I'm so pleased it has helped you and your husband. Good luck with the scan today let's hope it's good news. It's strange how oncologists deal with this awful disease, some offering a break whilst others keep giving it. Tracy has it every 3 weeks now to give her at least an extra week to recover from what they say is the most toxic and tough chemo. As a family we have received so much support from this site including the nurses. Reading about others helps you deal with the problems and issues. I also am in contact with a girl in America who has sent us so much information about her Dad who too was just like Tracy. He is still fighting this disease some 20 months after diagnosis. If you every want to know anything more about our journey, just contact the nurses to get my email and I would be more than happy to speak to you. Sending our love to you and yours. Annette xxxxx

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Thanks for drawing our attention to Tracy's story. It is inspirational and proves for those who are given the time and a chance, the fight can be worth it. Tracy's story has some similarities with mine, though I was diagnosed very quickly back in December 2012 and am still despite failed surgery and spread to my Liver, still going strong. I am on my 12th cycle of 'The Fox' to try and batter the liver mets and will have a PET scan in December to see what we have accomplished. The CA19-19 has dropped from 3000+ to 90 since starting the current round of chemo, so we expect good news from the scan. After that, I am not sure where we go but am seriously looking at Nanoknife if appropriate.


Again thanks for sharing and give Tracy my good luck wishes with her ongoing treatment.


Steve

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Hi Steve


Both my brother and I have followed your story very closely. We have seen all the support you have given to others suffering from this terrible disease. We also noticed you are suffering from neuropathy and Tracy has found this one of the real problems especially since the weather has changed. The girl in America said her Dad had the middle drug Oxipalatin removed after 16 treatments and he is still maintaining a CA19-9 at around 9. Tracy's oncologist has decided not to do CT scans since the last one performed after 12 treatments. Tomorrow is hopefully number 22 treatment.


Keep fighting the fight Steve and sharing your story helps us all to learn and keep positive. We certainly wouldn't have coped without this site and the lovely kind and caring people that are all here on what is a roller coaster of a journey. Hopefully now we have reached this point we can update with her ongoing treatment. Annette

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Hi Annette


Well done on the post and the film! I know I don't need to say welcome as I know you have been using the forum for a while.


Tracy is doing so well :) As you know, Jonathan also suffered neuropathy in his fingers and feet and wrapping up warm is a necessity. Jonathan also had reflexology on his feet which helped as well and I have also heard that acupuncture can also be helpful.


Looking forward to hearing more from Tracy and her story now.


Keep on keeping on as we say


Cathy xxx

Edited by Cathy
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Hi Cathy


Thanks so much for the kind words. I had to mention you in the post as you have given me so much help and support with everything. Yes keep on keeping on. Lots of love to you xxxxx

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  • 2 months later...

When Tracy was first diagnosed we trawled the internet and my brother came across a video of a man in America. His daughter had posted it and written a blog. We contacted her via email and have continued to remain in contact for the last 14 months. You all know how hard this fight is and the relentless problems it causes both the patient and the surrounding family and friends. I logged onto facebook this morning and saw that Jeannie had put on an update of her Dad achieving 2 years survival. They have given us faith, hope, support and encouragement. This story is well worth a read just to keep you all positive even on the darkest days. Here is the link http://stage4hope.blogspot.co.uk/2015/02/two-yearsand-counting-update-on-dad.html?spref=fb. I hope that you find this helpful. Love to all on this site you are all amazing, kind and supportive people. Annette xxxx

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