A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Genevive
Posts: 6
Joined: Thu Jun 16, 2016 3:01 pm

New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Genevive » Fri Jun 17, 2016 5:19 pm

Hi

I have been meaning to join the forum for some time but now feel it is the right time to do so.
I am 42 years old with 3 children in primary school.
I was diagnosed at the beginning of November 2015 with locally advanced P C. My difficulty with surgery is the involvement of vessels although I am unsure which ones.
I had 10 rounds of 5 F U chemo and I have started chemo radiation therapy which is due to end in late July. I found the initial chemo tough with bad side effects but so far the chemo rad is ok.
Fortunately, I am currently fit and active with what I hope is still stable disease.
Prior to my diagnosis I was in good health so all of this has all come as a terrible shock. I hope that my current treatment or some other will shrink the tumour sufficiently for it to become operable.
I am thinking that the next avenue after chemo radiation might be nano knife. I wonder if this is an absolute alternative to surgery or whether, if suitable, you can have nano knife and then go onto surgery.
Also I wonder how often inoperable becomes operable through treatment or from a second opinion in the UK or abroad.
Anyway I am very glad to join you on the forum and look forward to hearing from you with your experiences.

sandraW
Posts: 1031
Joined: Thu Oct 31, 2013 5:38 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby sandraW » Fri Jun 17, 2016 9:44 pm

Hi Genevive,
Welcome to the forum,the place no one wants to be, but where you will get lots of help support and advice.
I am sorry to hear that you have been diagnosed with this dreadful disease, and at such a young age too.
Ruthus, her thread is " Mum of 42 recently diagnosed inoperable PC" has just had successful surgery in Heidleberg, Germany. so there is hope out there, her story sounds similar to your own.
I lost my husband, just over a year ago now, after a 16 month battle.He had a tumour in the tail of his pancreas, he had successful surgery but there was lymph node involvement and the disease spread to his liver, he had 21 rounds of chemo and stayed remarkably well throughout until the last 6 weeks before his death.
Please let us know how you are doing, take care sandrax xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Wife&Mum » Sat Jun 18, 2016 1:16 am

Dear Genevive

I'm very sorry to hear what a difficult time you've been having over the past 6 months. This forum is a very warm and caring place and I hope you find it helps to post here, whether to raise a query or to vent to others who understand what you are going through.

To briefly share my experience, my beloved husband was also diagnosed with locally advanced PC - this was just over a year ago. His tumour was found to involve the SMV/portal vein but after 3 months of chemo (Folfirinox) then 5 weeks of chemoradiotherapy he was able to have a successful Whipple. He is currently doing really well.

My understanding of NanoKnife is that it's most commonly used on inoperable tumours and if the treatment is successful it can extend a patient's life for 2+ years. I don't remember reading on this - or any other - forum, of anyone who became operable after NanoKnife. But I've grabbed the following from another section of the PCUK website:

"For a small number of people, it [NanoKnife] may shrink the cancer enough for surgery to be possible – although we need more research into this."

http://www.pancreaticcancer.org.uk/info ... nanoknife/

Regarding the rate of conversion from 'inoperable' to 'operable', I'm not sure anyone could put a figure on it. PC is a very individual disease, some tumours respond to treatment and others don't, and some chemo regimes seem to be more effective at reducing disease than others. The type of vascular involvement has a considerable bearing on operability: veins are more operable than arteries. Some surgeons are more willing and/or able to have a go than others. There are so many factors at play.

Wishing you all the very best
W&M

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Proud Wife » Sat Jun 18, 2016 9:44 am

I am so very sorry to hear of your diagnosis and would like to welcome you to this forum. I still don't understand how PC could have taken my husband in the way that it did, so i am not going to try to give any advice, there are others on here far more knowledgeable than I and the specialist nurses on here are truly amazing, don't hesitate to call them whenever you need . I will however, be here to support you emotionally in any way shape or form that I can and I will do likewise for anyone else that should be diagnosed with this evil cancer.

I've now learnt that very single person is different and PC affects them in so many different ways - there's no set pattern or even logic. And there's absolutely no reason why you can't be one of the luckier ones. Please remember that.

All the very best
PW

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Ruthus » Sat Jun 18, 2016 10:39 am

Welcome and I am so sorry to hear about your diagnosis.
If you have read my thread you will see I was also diagnosed with inoperable PC at the start of 2015. Having been previously very active, healthy and fit this came as a terrible shock. I am also 42 like yourself but my children are 19 and 21. It must be so incredibly difficult to cope with this disease, treatment and three primary school age children. My heart go's out to you.
I commenced Folfirinox chemotherapy in December 2015 with the hope this would shrink the tumour away from my SMA artery which was making the tumour inoperable. I had my mid treatment scan in March which indicated stable disease, no spread but no significant shrinkage. It was still deemed inoperable due to partial encasement of the SMA. The intention was to carry on with a further 6 Folfirinox treatments.
In the meantime I decided to pursue other options. My tumour measured 3x3 cm and was deemed appropriate for the nano knife. I had a consultation in London at a private clinic. I was deemed suitable. This procedure would have cost £15,000 privately. I am aware that nanoknife is being given on the NHS in Leeds but only in certain cases.
At the same time as being found suitable for nanoknife I had a reply from a well known centre of excellence for pancreatic diseases in Germany. My Oncologist had forwarded all my information and recent CT scans to them and the felt my tumour was resectable. To cut a long story short - we travelled to Germany for a consultation. I was told there was a good chance my tumour could be removed and I booked in the following two weeks for exploratory surgery.
Three weeks ago I underwent surgery. It took 8 hours but the tumour was successfully removed! I spent two weeks recovering in hospital in Germany and have a temporary reversable illeostomy. I have to say this has given me the most difficulty since surgery and I appear to have recovered from surgery very well. My scar in minimal and I am walking and moving very well.
My histology and path results are good with 38/38 lymph nodes clear. Of course I know this disease can reoccur but I am in a better position than I was. I have been advised on completing adjuctive chemotherapy and had been advised to complete 3 further folfirox treatments as I had received 9/12 prior to surgery. I have a review appt with my Consultant Oncologist on Thursday to discuss this. I will have 3 monthyly CT scans also.
The cost of surgery and a two week hospital stay in Germany was not cheap. We were lucky in the fact that we had taken out medical insurance around 20 years ago. After my diagnosis this paid out a considerably sum which has covered the cost of the surgery. The surgery and hospital stay cost £40,000.
We are now back at home and I am recovering. Please feel free to privately email me as there is more information I can give you which I don't want to put on the public forum. You can contact the very helpful and excellent PC nurses and they will put us in touch with each other via and introductory email.
I wish you the best and please don't lose hope!
Love Ruth xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Dandygal76 » Sat Jun 18, 2016 1:58 pm

Hi Genevive,

I am so sorry you have got this awful disease and with young children... my heart goes out to you. I too have been looking at Nanoknife for my dad who is 62 and fighting this alongside many. Either the PCUK nurses or Ruth would be your best bet to get details of where you can get Nanoknife but if you google Nanoknife UK you will find the place in the first few hits. There is also a group called 'Nanoknife Surgery Warriors' on Facebook and they include some people that have had Nanoknife here in the UK. Professor Nanoknife in London said to my dad he has people going 4.5 years on in my dads position and my dad is stage IV with liver and bone mets and so it is likely an option for you, as long as the tumour is not too large. However, you will see 4 and 5 cm banded about as a maximum on the internet but when my dads was measured at 5.4cm I still sent the scan to Professor Nanoknife and was told he was eligible. The one thing I can state for certain in advice to you is second opinions all the way. PW is right, everyone is different with PC but also the way each consultant views PC can be different. If you have no money you are still entitled to this on the NHS so look for someone who knows their stuff (there are a few renowned experts on the NHS). I am not saying the advice you have got is wrong by any stretch but a second opinion can never hurt. This forum is a great source of support, although I am sorry life events have brought you here. x

Genevive
Posts: 6
Joined: Thu Jun 16, 2016 3:01 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Genevive » Mon Jun 20, 2016 3:20 pm

Hi

Thank you so much for your lovely welcome and very helpful replies.
So sorry Sandra and Proud wife for your loss, I am sending my love to you both.
Ruthus - I have left my email with one of the specialist nurses (Dxxxx) and would be very keen to hear from you in more detail about your experiences. I hope that you continue to recover well!!
W&M - Thank you for the information, it's good to hear your husbands' story and that inoperable can become operable!!
Dandygal76 - Thank you for the info - I wish your Dad all the very best!!
My update - I am feeling ok on the chemo radiation and went for a very enjoyable lane swim this morning. I'm not as fast as I used to be but it's great being in the water.
Anyway I'm very thankful for this amazing charity and all that they do including being able to access support in this way.

Genevive xxx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Ruthus » Mon Aug 01, 2016 9:56 am

Dear Genevive

I hope you are doing well. I haven't had an email to link us. I will check my junk mail but realised its been a while since you requested we were put in touch via email.
Wishing you all the best
Ruth

Genevive
Posts: 6
Joined: Thu Jun 16, 2016 3:01 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Genevive » Mon Aug 01, 2016 4:10 pm

Hi Rufus

Thank you for your post. I have sent you a direct email now!
Just to update everyone else, I have now finished my chemo radiation therapy which went well
and without any real side effects although 11 days on I have some backache which I haven't had before.
I am now awaiting a c t scan in about 4 weeks to help decide the next step.
I very much hope that I become operable. If not may be nano knife next and go on from there.
Anyway all the best to everyone touched by this difficult illness.

Genevive xx

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Dandygal76 » Mon Aug 01, 2016 7:01 pm

Hi Genevive. Being my usual google queen that I am I have just looked up the side effects of radiotherapy and one is stiff joints and muscles and swelling in the area of the radiation and this can come days or weeks after the treatment has finished so hopefully it is nothing to worry about. We are always waiting on pesky scans are we not? I have everything crossed that you become operable.... we like a bit of good news on here. x

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Veema » Mon Aug 01, 2016 8:18 pm

Good luck with the scans...I find the waiting and the 'news' more stressful than anything else.

I do hope you become operable.

Vx

Genevive
Posts: 6
Joined: Thu Jun 16, 2016 3:01 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby Genevive » Mon Aug 01, 2016 10:02 pm

Hi

I am always so grateful for the lovely and helpful replies on this forum.
I very much hope that the chemo radiation is doing its work and the soreness / niggle is the tumour being given a good roasting!!!
I will let you know any updates especially when the next scan is finalised and I have the results.

Lots of love

Genevive xxx

sandraW
Posts: 1031
Joined: Thu Oct 31, 2013 5:38 pm

Re: New to Forum Mum of 3 diagnosed Locally Advanced PC

Postby sandraW » Thu Nov 24, 2016 1:11 pm

Hi Genevive, I just noticed you didn't let us know your results, sorry if I'm being nosey, I hope things are going well for you, take care, love sandrax xx