1

(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
x

2

(23 replies, posted in General Discussion)

Thank you to you all

3

(23 replies, posted in General Discussion)

Thank you to you all

4

(23 replies, posted in General Discussion)

Thank you to you all

5

(23 replies, posted in General Discussion)

Thank you to you all

6

(23 replies, posted in General Discussion)

Thank you to you all

7

(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

8

(23 replies, posted in General Discussion)

Thank you Duke.

9

(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.
x

10

(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
x

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.

11

(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
x

12

(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

13

(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

14

(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
x

15

(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
x

16

(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
x

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
X

18

(6 replies, posted in General Discussion)

Willow

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
x

19

(6 replies, posted in General Discussion)

Shot in the dark.   Has anyone who has been diagnosed with horrid cc been scratched by a cat prior to diagnosis?

I appreciate this is a crazy question, but just wonder if there maybe a link.  I was diagnosed in November 2011 and years (1988 I think) previously was diagnosed with 'cat scratch fever' having been scratched by a cat and had infected lymph nodes removed.

I am currently undergoing chemo and am looking for possible links between any cc diagnosed patients.

My days are numbered and I would do anything to try and find a link between sufferers that help in the future.

God bless you all
x

20

(15 replies, posted in General Discussion)

Thank 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
Sandie

21

(15 replies, posted in General Discussion)

Let battle commence again.  I am so sorry to tell my caring cyber friends that cc has returned in my lymph nodes.  Scan have revealed that they have doubled in size in the last few months and possibly invited a few friends to the party.  In a few weeks I will start six months of Gem/Cis and hopefully the party will quieten down.  I am interested in side effects of Gem/Cis - had Xeloda before which left me extremely tired with red paws and a touch of chemo brain and flu.

Sandie
x

22

(14 replies, posted in Introductions!)

Satchie

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

23

(8 replies, posted in General Discussion)

Good news Kris, I'm with you, keep smiling xxx

24

(18 replies, posted in General Discussion)

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

25

(18 replies, posted in General Discussion)

Marion ... I'm now permanently in the UK and seeing a prof of onc tomorrow in Manchester (I'm praying for good news).