sandie-in-france
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Thank you for your responses. Just before Christmas, following a second nano knife opinion, I accepted that this was no longer an option. I asked my oncologist for as much time off as possible before starting another chemo treatment. I immediately booked myself on a long holiday to include New Zealand, Aus and SA. I know when I return I will have the fight of my life to get through six more months of horrendous chemo, but I also know I will have some amazing memories to help me through that journey together with the love and support of so many family and friends. hope I am strong to cope, but totally accept that if not, I will end my journey with a smile. I was offered clinical trials of Folfax but declined as I felt I still had more life me and was not prepared to take the 50/50 placebo gamble.
I hate this disease with the same amount of passion as I love to live life.
Sandie
Hi Angela
I discovered I had cc in November 2011. I was told I had two months.. I was then living in France. They, rather reluctantly, gave me a resection which took 10 hours. I got through that then had serious complications due to a leaking bile duct. I got through that and then had radiation and a course of Xeloda, finishing treatment in May 2012. In July 2013 a scan revealed cc had returned in lymph nodes close to my aorta. Six months of harsh gemcitabine and cisplatin followed with good shrinkage results. I have 5 tumours.
My advice for anyone going through this treatment is sleep whenever you want, stay positive, laugh every day and eat well … I avoided red meat, dairy to a minimum, very limited sugar, but everything else in moderation. I firmly believe in sleep, no stress, fun and laughter..
I am now investigating nanoknife (prof Leen at The Princess Grace in London is a great starting point … he’s very honest and approachable.
Live life to full darling.
Sandie
xYou must not give up your fight, research everything you can and contact anyone who may offer you help, but keep perspective, use your sixth instinct to guide you.
Jayne and Angela
I had a resection but the dreaded disease went to my lymph nodes … operations to remove were out of the question due to location, near my aorta.
I had six months of gemcitabine and cisplatin which shrunk the tumours dramatically although was a harsh treatment.
I am currently investigating whether nanoknife may be able to be used to remove the tumours (not the cancer, sadly) and if successful will give me time. Prof Leen at the Princess Grace in London is a good contact for nanoknife.
My heart goes out to you both, but please don’t give up, keep up the research and be positive.
Take care
Sandie
xSammie
I am so sorry to hear about your precious dad.
Please, please get a second opinion. Prof Valle at the Christie is excellent and Helen at AMMF can also point you in the direction of other avenues.
I wish both you and your dad the best.
Sandie
Jayne,
I saw Prof Valle at the Christie in Manchester. He is excellent. Also contact AMMF.org.uk who have a minefield of information and contacts in the UK.
I was given 2 months in November 2011 … don’t give up.
Regards
SandieHi Gros2014
I really hope all is successful for your mum and sorry you had to come to this site, but as you did, it’s the best source of info to help you.
I too would be interested to know more details of the nanokinfe procedure, particularly regarding your words “involvement of a major vessel.” Which vessel was involved? I have lymph node involvement close to the aorta and have been told paliative chemo is all that can be offered … always looking for other options.
Take care, my heart goes out to you and your mum.
Sandie
xDear Surfer1
I had the portal vein embolisation procedure in November 2011 prior to a resection in january 2012. It was carried out under general anaesthetic and was quick and totally painless. Following the procedure, diet was important. Eat lots of green and red vegetables, drink lots and generally eat as much as one can – little and often. The liver uses up a lot of calories in the growing process and tiredness can be an issue. My liver grew 24% in 3 weeks and feeding it helps. Look up foods that stimulate liver growth on the Internet and just eat eat eat.
Thinking of you
Sandie
XWillow
Cc has appeared in lymph nodes very close to my aorta. Surgery and radio are out if the question because of the location. I am hoping chemo will reduce the size of the lymph nodes and if so, will have 6 sessions followed by six months off and then have another 6 sessions. I have been told that no one has had more than 3 lots of chemo. My oncologist told me on 14th July 2013 to expect 18/21 months. I have taken several opinions and all are the same. I have completed my first gem/cis cycle and so far I have tolerated it very well. Constipation – easily solved. Tiredness – easily solved. Metallic taste – easily solved.
I am very positive but also very realistic. Every day I do something new, achieve something and laugh and giggle. I have a wonderful supportive network of friends and family and I secure in the knowledge that I know they will be there for when I really need them. I am not afraid. My deepest sadness is that I will not see my wonderful son live his life (he is 22).
Emotionally I am fine … of course I have dark times (I call then my mascara and pillow days) but a giggle and a laugh always puts me back on top and I’m never short of them. Everyone knows my situation and I discuss everything that is happening to my quite openly to anyone who asks or wishes to know. I find that the easiest way to deal with it. I avoid stress at all times. For example, last time I had chemo it broke my heart to see my hair falling out (I have a mane of beautiful thick wavy hair). If it falls out this time, I will shave it off and have fun choosing hats and scarves rather than be stressed at seeing it on the floor every day.
Maybe I sound cold, but I am far from that. I believe I am being cared by angels and that there is a reason why this is happening to me. I do not yet know that reason, but one day I will.
Thank you for remembering me.
With love Sandie
xThank you all dearest friends, I am up for the battle, just awaiting a start date. I am not frightened of the inevitable, just want to live life to full in the meantime and know I won’t go down without a battle. I think the chemo regime is going to be tough, but hey ho, when the tough gets tough, the tougher get going and I’m tough. Have researched possible side effects and got into the system which I hope will support me through.
I just so wish no one had to go through this, but we are dealt the cards we are dealt and have to play the hand we have.
With love and appreciation
SandieSatchie
I’m sorry to hear of yet another case of cc. I had a tumour which was 11 x 9 x 6cm and my resection was successful.
Good luck, I will keep you I my prayers for success.
x
Thank you special friends for your hugs, support and love, soooo much appreciated. Scans and tests to follow, seeing my new super amazing prof again on the 15th October when decisions will be made … or not … hopefully lots of prayers and love will shrink tumours into insignificance. Miracles do happen … I know they can, I’m still here so … BECAUSE I CAN. Super positive, still giggling and still having loveable blonde moments xxxx
