1

(48 replies, posted in Introductions!)

Hi Hazel
I am Sandie and I also have cc and live in the UK.  Like your daughter I had a resection followed by chemo and radio.  The chemo may not be easy but it may not be too tough either, as we each react differently.  If your daughter stays positive and finds lots to laugh about she will get through it.   There are lots of coping strategies I discovered to help with side effects and also to help with talking to people about progress whilst on chemo.   Like your daughter, I saw Prof Valle for a second opinion and he really is excellent and honest.  My advice would be to stay in touch with Helen at AMMF who has an amazing knowledge and network of people that can offer advice.  (AMMF  also have a discussion on board on their site).  Also to use these forums to talk to others who may have experienced similar side effects to the ones your daughter may go through.
Take care and I wish your daughter and yourself the best.
Sandie
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2

(10 replies, posted in General Discussion)

Brigette,
I had six months of gem/cys and got 60% tumour reduction.  It was a harsh regime and I suffered extreme fatigue and horrid mouth ulcers, but the result meant Ithat following treatment I had 18 months before the tumours stared growing again which gave me excellent quality of life.  Everyone reacts differently and there is little advice one can give because of the differng reactions.  I would suggest that you drink plenty of liquids. (2-3 litres every day) and get advice as soon as a side effect occurs.
I wish you luck
Sandie x

3

(4 replies, posted in General Discussion)

Hi Tony,

I too have lymph node involvement and due to the fact they are close to my aorta, treatment is not really an option and I have opted to take the quality of life course.  In the past few weeks I have had uncomfortable dull aches in my lower back and across  my front between my hips.  I have been taking paraceutomol, but in the last couple of days the pain has worsened and I now cannot lie on my back.  I too do not want yo start on morphine but realise that I am heading in that direction.  I think when the time comes to start morphine, it will be another quality of life decision.  I appreciate this answer won't offer you much help.

I wish you and your wife the best.

Thinking of you
Sandie

4

(9 replies, posted in Introductions!)

Tony

I too have CC and live near Nottingham.  I had a liver resection in January 2012 but a year later it recurred in my lymph nodes.  I was told I had a maximum of 21 months, that maximum date came and went .  Don't use the any dates you are given as a target or guideline, we are all different and a positive attitude together with lots of love, fun and laughter is the best medicine.

The Christie is excellent and I would also encourage you to contact AMMF who are the only cc charity in the UK and are absolutely excellent.

I wish you are your wife the best.
Sandie

Hi IrishMac

I'm live in the UK (was living in France when first diagnosed 4 years ago). 

Sandie

6

(7 replies, posted in General Discussion)

Thank you for your lovely comments.  I do not post very often, but regularly read the posts and am so often brought to tears by the sadness, strength, support and love that emanates from people using this site.  I so wish none of us had to have even heard for this dreadful disease..

Keep smiling and bless you all.
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7

(7 replies, posted in General Discussion)

It has been quite some time since I posted on this amazing site, but I just wanted to let you know I am three and a half years post diagnosis.  A year ago I completed six months gem/cys and had 60% shrinkage to the tumours.   My latest scan in May has shown a 1mm growth and a cluster of new small tumours.

Having regular 3 monthly scans leaves me feeling like I am playing Russian roulette - every time I get a good scan result showing no or minor growth, the chamber is empty.   But I know one day that chamber will not be empty  and I will then have to face the consequences.

In the meantime, I carry on life with a giggle and a smile and am still experiencing new adventures and meeting wonderful  people.

My strength is my attitude and I wish anyone else with this horrendous disease lots of attitude.

Hi,
I had a portal vein embolisation in Nov 2011 prior to a liver resection in Jan 2012.   I too became tired and it just got worse until I had the resection.   It was explained to me that a lot of the tiredness is due to the fact that the body uses up to 3,000 calories a day just growing the new part of the liver - no wonder I felt exhausted!  I think it is important to maintain a good diet during this process - ensure you eat lots of green vegetables (spinach, broccoli) and red vegetables (fresh tomatoes and red peppers) and avoid alcoho.  Are you going to have a liver resection?  If so, the tiredness will continue for some after that, but it is worth it.  My advice is, if you feel tired, lie down and sleep.  Your body can concentrate on helping you more when you are asleep.  If the operation is a success, it will all be worth it.
Keep smiling and fighting
Sandie
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9

(23 replies, posted in General Discussion)

Thank you to you all ... you have reinforced that I have made the right decision.

I am thoroughly enjoying my trip and building a lot of memories to live on for the months to come.   I have had the chance to see dolphins up close, jet boating, geyser watching, horse riding and even did a bungy jump.  I have done all of these adventures with my precious Little Bear who has been through so much with.  He is helping raise awareness of this dreadful disease for AMMF in the UK and I'm sure if you log on to their website you will be able to meet him.
Thank you for support and thank to this amazing site.
Sandie
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10

(23 replies, posted in General Discussion)

Thank you to you all

11

(23 replies, posted in General Discussion)

Thank you to you all

12

(23 replies, posted in General Discussion)

Thank you to you all

13

(23 replies, posted in General Discussion)

Thank you to you all

14

(23 replies, posted in General Discussion)

Thank you to you all

15

(23 replies, posted in General Discussion)

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

16

(23 replies, posted in General Discussion)

Thank you Duke.

17

(23 replies, posted in General Discussion)

Following 6 months of Gem/Cys which ended in May this year, my latest scan reveals that my 5 tumours (all located near my aorta) have started to grow again and 2 more have joined the party.

I am investigating nanoknife and hoping that will become an option.  Meanwhile, my oncologist has offered me a clinical trial of Folfax or back on Gem/Cys expecting that the results will not be as good as last time and the regime much harsher.

It's there any other options I am missing?

Still smiling, but getting  a bit desperate.
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18

(14 replies, posted in General Discussion)

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
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You 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.

19

(20 replies, posted in Introductions!)

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
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20

(12 replies, posted in Introductions!)

Sammie

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

21

(20 replies, posted in Introductions!)

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
Sandie

22

(8 replies, posted in Introductions!)

Hi 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
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23

(6 replies, posted in General Discussion)

I thought I would post an update.  Am an active reader but don't post too often.

I had my resection in January 2012 followed by adjuvant chemo and radio but in July 2013 a CT scan revealed recurrence involving two lymph nodes.  I completed six months gem/cis chemo which was tough to take but the results were good and bad.   Three more lymph nodes involved but 60% reduction ... as of May 2014 all five lymph nodes were below one cm.

It took two months to recover from chemo but I am not back to normal and thoroughly enjoying life.

I know that there will be growth in the lymph nodes and that there is only a certain amount of chemo one can tolerate, but for the time being life is good ... I fill it with laughter, fun and new achievements which keep me alive and hoping.

My message is don't give up on life ...enjoy what you have and love living.

Sandie
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24

(6 replies, posted in General Discussion)

Hello everyone

It's been sometime since I last posted.  I read the posts regularly and find it so sad whenever I see a another person diagnosed with this dreadful disease, but the support and care this site provides is invaluable.

I am now living back in the UK but miss life in France.

I have completed 6 months (8 cycles) Chemo - cisplatin/gemcitabine.  No major side effects but extremely tired throughout.  I did have problems with the steroids and had to stop taking them.  Latest scan showed 60% reduction in tumours which was totally unexpected but brilliant news.

So now looking  forward to a summer of fun and tumour stability.

Sandie
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Dear 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
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